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Gastrostomy/ tube feeding support group...

(1000 Posts)
Isitme1 Sun 03-Jun-12 12:01:16

Hi.
I was looking for a support group for tube fed babies/ children but couldn't find anything.
Come and share you experiences and tell us how you are coping and how you felt when you first started with tube feeds.
I will introduce myself:
I have 1 ds- 21 months old.
Poor eater due to severe reflux and severe food aversion.
At his worst he was fed Baby food via syringe into his mouth like meds. He would take 60 mls a day in high calorie milk and a sip of water or juice in the day with no food in between.
He would scream at the sight of his high chair.

Fast forward a few months and he has a peg feeding tube. Hes on neocate advance ( suspected milk allergy) but have kept him on normal food to encourage oral intake. He still has very little by mouth but thankfully he's getting all his nutrients.
The gp put me down as a neurotic mother.
Ds is being seen by top gastric paediatrician.
He's having gut motility checked as his food is still
In his tummy 10-12 hours later and comes our undigested.

Hes had meningitis and septecmia at a young age too.

Come and introduce yourself!
X

2old2beamum Sun 03-Jun-12 19:33:48

Hi my 13 year old is j-peg fed. Just a brief history, like your LO had pneumococcal meningitis and septacaemia at 8months old and was left deafblind cerebral palsy and epilepsy. When ?recovered he was moved into a childrens home where he was naso-gastric fed until he was 4. We adopted him at 5.
Feeding was always a struggle HE DID NOT LIKE FOOD. I now wonder if it was a tactile defensive issue. He was NG fed again at 8 and then had a g-peg.
We then had reflux problems and a J-peg fitted and his feeding problems have gone smile the only draw back is he needs 24 hr feeding. If you want to chat I am here.There are many others too who will be able to give you support. Have also a 6 yr old who has a g-peg hmm

Isitme1 Sun 03-Jun-12 20:26:10

Hi.
Yep I just think that there should be a support group for everyone on here for this. Ifsyim
It's not the easiest thing to do ( not the hardest either) but like with all things we all have good and bad days.
He had some rice last night ( yay) but it came out in his nappy undigested :|

How are you coping with everything?

It's a lot to cope with at times.
I also think he's got an infection at the peg site.
It was oozing puss today. I've cleaned it and will get it swabbed tomorrow but results won't be available until Friday I think as they will be sent on wednesday to check for growth.
He had swabs done last week which showed gut flora (?) and bacteria and skin that grew on the swabs. The gp said that he didn't need antibiotics even though he knew that ds gets ill quick and seen as there was bacteria that would eventually lead to infection.

Do your lo's suffer from a lot of infections?
Ps I'm very clean when it comes to cleaning and handling him- when I'm cleaning the site use antibacterial hand wash then the gel before I open the sterile things to clean him with and I use sterile water too.

X

sneezecakesmum Sun 03-Jun-12 20:28:40

DGS is new to the pEG scene. He is 3.7 and has CP. He can eat, does eat and doesnt aspirate. Unfortunately he doesnt eat much, has hardly any teeth (enamel hypoplasia) and vomits and gags very easily. All of which meant we struggled with feeding and never got his weight onto the charts! When he started nursery the vomiting and gagging (caused by colds and bugs) went into overdrive and he started gagging at the sight of food sad as stopped putting on any weight - the stress was awful.

The paed had wanted a PEG for months before and we knew now was the time. Luckily all went smoothly and DGS has feeds overnight, tops ups in the day and still eats what he wants without force feeding. He now weight 12.3 kg and is on the chart and caught up to his height. Its brilliant for keeping up his fluids (poor drinker) giving meds, and continuing to feed when he is ill - still vomits up the feeds when ill but the fear and anxiety have gone. We intend eventually to feed him up like the christmas turkey grin

Isitme...sounds like a nightmare for you too. at least with the PEG that stress goes. I wonder if the slow motility is linked with food allergies? DGS poos quite normally thank heavens, dont need that on top!

sneezecakesmum Sun 03-Jun-12 20:31:37

isitme. Do you have a PEG nurse come to see you? We do and she has all the right dressings, and antibacterial gel or somesuch stuff. Anyway, she has sorted out all the teething problems and the wound site now looks much healthier and doesnt seem to bother DGS at all.

Isitme1 Sun 03-Jun-12 20:50:08

My ds knows now that his peg helps him with his feeds. When he's in a lot of pain he actually points to the pump stand.
He is happy being hooked up and waiting for it to finish too ( hourly pump every 4 hours in the day)
We have the community nurses but they are useless.
One says one thing and the others says different.
The last time they came out she left the swab set for me to do but in a good way.
She was happy with hand and tube hygiene as she used the same thing as what I was using.
X

sneezecakesmum Sun 03-Jun-12 21:20:15

DGS wound did look a bit gummy at first but looks fine now, I think these teething problems are often there at the beginning. He doesnt pull on it or anything which surprised me. Its practical stuff like fixing it so it doesnt tug and clothing that is suitable. Our community nurse is good and really helpful so that good! My DD has a milton steriliser for the syringes and things, but they are very good at providing the feeds and new syringes. ironic really as she bf and gave away her milton steriliser so had to buy a new one!

Once you get into the swing of it, night feeds etc. it not bad at all. Still hate the sight of the dangly tube though! Its the 500ml/kal night feed we feel that has done the trick weght wise and also helped with his sleeping.

Herecomestheninkynonk Sun 03-Jun-12 21:59:42

Hey all, can I join you please?

DS 27 months and never had more than a taster of purée on his lips. He has some missing genes which has caused an unco-ordinated swallow. Mini button and neutrini feeds going fine but SALT doesn't want us to push food by mouth.

Thing is I know DS is ready now. He hated having his teeth brushed, but by perservering he now opens his mouth ready for the brush and will even put it in his own mouth (he never does this with toys). Although he closes his lips and dribbles if I ever try to get food near him I know that it's not an aversion, just him being him. In time he'll get used to it and enjoy it, but can't get professionals to agree.... Any thoughts? x

Isitme1 Sun 03-Jun-12 22:16:06

Ninky nonk of course you can come and join
brew

Hmm I would stick with just the tube feed as advised.
Give dc a cool teething ring to chew on when he's in that type of mood.
How did you cope when he had the button put in?
How old was he?
We are here to help smile
X

Isitme1 Sun 03-Jun-12 22:26:46

Sneezecakes I think we all asume that dc will pull but a day after surgery he pulled and it hurt him and has never done that since.
Ive cut small holes in his vest so i thread the tube through it and pop the rest into his pants. So feeding time is easy.
His reflux plays up a lot so I'm glad it's day feeds as he's mobile and running around after but he struggles with his last feed at night.
X

2old2beamum Sun 03-Jun-12 22:55:42

Yes Isitme 1 Both mine get very smelly mucky stomas GP gives me Fucidin which clears it up quite quickly.Neither of mine eat at all DS has oddly placed stomach and DD has a poorly repaired cleft palate and aspirates
Welcome everybody brew

Isitme1 Sun 03-Jun-12 23:05:03

Awww. Ds is just so scared of food i just feel helpless!
He won't let a spoon go near his mouth apart from a couple of spoons of cocopops which he spits out.
He is very much finger food lover. When I say lover I mean he will have half piece of toast on a bad day. All day.
On a good day if he has 1 full meal and half of another it's brilliant but still not enough for him. He is now being diagnosed as a child with failure to thrive which makes me feel like I've let him down.
X
Gp not very good.
I got a letter to say he needs to speak to us about results of the latest swab and when we got there he said all was fine.
I mentioned te letter again and he checked results again and told me about gut flora, bacteria and skin growth- which didn't mean much to me as he didn't get the antibiotics that I was hoping for as he keeps spiking a temp. With ds history I know how quickly he becomes ill ill.!
brew
X

GRW Mon 04-Jun-12 08:24:32

Gut and skin flora are just the normal bugs found in the gut or on skin, so you wouldn't treat with antibiotics if the swab grew them. I am a children's nurse, and we use maxitrol eye ointment as a topical treatment for sore gastrostomy sites- it contains an antibiotic and a small amount of steroid.
It's really hard when a child has an aversion to putting food in their mouth, and you haven't let him down. it's good that he is still eating something, and will hopefully improve.

Isitme1 Mon 04-Jun-12 08:51:27

Thank you grw.
It does feel different when his dad likes to blame me.
He's not here to help himself.
Atm he's sat in the high chair with dry cocopops and toast.
He's playing with his food but the fact that he's not chucked it on the floor yet is brilliant!
What about the bacterial growth?
He has been spiking temps and yesterday his site was very gooey and greeny yellow like puss.
X

GRW Mon 04-Jun-12 10:37:22

If you have a community children's nurse it would be worth letting them know today about the discharge from the gastrostomy site, and the temperature which may or may not be related. They might be able to sort out a topical treatment like maxitrol, or ask the hospital doctors if he should have an antibiotic. It's true that GP's are often not familiar with gastrostomy problems.

2old2beamum Mon 04-Jun-12 12:23:19

Listen to me you are not a rubbish mum. These things happen and thank goodness we have tubes!! When I did my paedriatric training in 1841 grin
we had to force feed those who wouldn't eat I am so ashamed we had to do this. It was the cruellest thing I have ever done in my life. Your LO will feed when he is ready, you have the gastrostomy to fall back on He may never feed properly it is not the end of the world and it is not your fault I found it a huge weight off my shoulders when DS was tube fed.
Have you got "open access" to your paediatric dept if so take him there with his mucky gastrostomy. I find ours brilliant despite being 30 miles away.
Good luck X
P.S You are a good mum

Isitme1 Mon 04-Jun-12 16:38:48

Thank you for that smile
Feel a lil better now. Hes eating a little bit atm. He's in his high chair and having some food.
Bit by bit smile
We don't have open access as such because we live almost 2 hours away from the hosp where he got the tube from and where his gastric team is.
We are doing the shared care thing so we will have a peaditrician here that will take care of emergencies and general health.
Hope everyone is having a good day x

rosielum Mon 04-Jun-12 19:05:36

Hi everyone, my DD1 is 2.9yrs old and has Dyskinetic CP, she had a peg fitted a yr ago. She had an ng tube till she was 6wks old then bottle fed expressed milk (she couldn't breast-feed)and introduced solids at 6mths. we spent all our time feeding her but she really struggled with solids and when i got pregnant again when she was 14mths old i stopped expressing for her and her weight just dropped off the charts. She had an ng tube for 5mths then had her op for her peg. We got her weight back up to the 20th centile but she had horrendous reflux mostly caused by constipation. She ended up having a rectal prolapse and i felt so angry that i was giving her formula that was causing her these problems. I made the decision to take her off formula and start putting blended food down her tube instead. I realise this isn't for everyone but have you ever read the ingredients list on your childs formula? I just couldn't face my DD living on that for the rest of her life, It's made a massive change to her and us. Her constipation is resolved and she is now on the 50centile for weight. Anyone else giving their DC a blended food diet?

Herecomestheninkynonk Mon 04-Jun-12 19:55:35

Hey again

Further to previous post thought I'd share our experiences to date as it may help some people who are newer to the peg/mini.

It was clear in 20wk scan DS was not swallowing so we were warned a peg was likely to be fitted early. He was NG fed for 4 weeks with mixed success, placed on reflux meds and had the op to fit the peg. He got an extremely high temperature that evening and it looked sore and he had several infections. A month later the mini button was fitted. Much easier, discreet, doesn't catch if wearing a best etc. I expressed for first 5months which helped him.

The first year was mixed, he would gain weight then stay the same for months at a time. He couldn't tolerate a heavy night feed and if he got any bug, would become intolerant to his formula and we were admitted to hospital a couple of times.

He also got severe granulation (a raised ring of skin around the site). It leaked and often would show growths -although as the specialists said most of them you find on skin anyway. After a lot of trial and error with nasty stuff like silver nitrate, we were recommended some ear drops for the granulation! I forget the name but they were amazing. They got rid of the granulation in 2 weeks and there has been none since, no bacteria growths or leaks.

We now have a feeding regime that suits DS who is on 50th centile for weight and plan for when he is unwell, water only then mixing with formula. The reflux meds continue but we haven't been admitted to hospital in over a year. We change the button ourselves although when it came out at nursery they had to call an ambulance as the hole can begin to close in 20 minutes (we have a disabled badge for the car for the same reason and that he can have unrelated breathing difficulty).

Sorry for long post but it may help someone and it's the right thread to lay it all out smile

sneezecake Mon 04-Jun-12 19:58:33

rosielum, I'm really interested in real food down the tube, please tell me more.
I have suggested it to our dietitian but she put on her best cat-bum-face and dismissed the idea!

DS had/has a food problem, would actually vomit at the sight of his bowl! he is still a pukey child but its worse when he has a virus.
he had a freka peg inserted in march after about 18mo of DH and I putting fingers in ears and singing loudly when the paed mentioned it!

DS was starved of oxygen at birth and has CP as a result, he was NG tube fed and then breast fed hes 3.9 now and still likes the boob! blush
overall he has taken well to the tube, has 500ml main feed overnight with fibre in it to help with his elephant poos.
we miss out breakfast as he is most pukey in the morning, and still full.
has a small lunch with a 100ml top up of high energy milk and the same for dinner, so far he has put on nearly 2kg and is finally on the weight chart yay!

he has managed really well with it, even holds the syringe when he is having his top up, feeding is so mch easier now the pressure has been taken off to get the calories in him.

sneezecakesmum Mon 04-Jun-12 20:23:05

Can second what GRW said about the maxitrol. Think it is what DGS had and it worked a treat. 1841! lol. Totally agree with the taking the pressure off. We were practically force feeding DGS at times and when I baby sat and gave him his lunch = 1 hour and ending in tears (mine!!!) Food can now be fun and if little isitme wants to just play with food thats fine too. Often when non eaters see other toddlers eating they want to join in and if they sit with their parents they will often want a bit of pasta or a chip off their plate. smile

Failure to thrive is a horrible expression, no matter what the mum feels like she is a failure and not doing it right.

We have not considered blended food down the tube yet as he still eats small amounts and luckily no constipation. It has improved if anything as we can get more fluid in which was also a nightmare. I did batch cooking, all fresh, steamed etc which he liked sometimes, but now going off those too but likes mucky jars of baby food shock still its food! He will eat chocolate for england!

Oh also carry on ninkynonk the more info the better. We were warned about granulation but seem to have escaped that, but silver nitrate must have been awful. DGS has the awkward tube dangling down. What do you do with it. DD tucks it into the front of his nappy...not IN the nappy but between the trousers so clean we hope. Doesnt seem anywhere else that will be comfy as we have to do lots of prone exercises and he rolls to each side and lays on his back so it will dig in. Awkward really, but otherwise think it has gone quite smoothly. (x)

sneezecakesmum Mon 04-Jun-12 20:23:46

Arrow up! That is DD

Herecomestheninkynonk Mon 04-Jun-12 20:25:37

Oh, meant to say DS is pump fed too, so if anyone has questions about that please ask. I would love to give real blended food, but DS doing well and I don't know where I'd find the energy with his other medical/behavioural issues. have heard it can be very successful so admire those of you who do!

Like sneeze cake DS has a bit of constipation but a movicol a day keeps things moving!

Isitme1 Mon 04-Jun-12 23:58:33

Wow
Thanks everyone for that.
I'm surprised there wasn't a support group before this?
Ds just had last feed of day n Is very uncomfortable.
He has 700mls in a day.
Might have to change it to where he has 175 early morning then 75 then 175 175 and 100 at night?
Any tips on venting?
Hope everyone has a good night x

starfishmummy Tue 05-Jun-12 00:00:12

IsitMe - children who are tube fed can develop a sensory aversion to eating/drinking orally, it isn't anyones fault, just what happens sometimes (and health pprofessionals don't warn you about); so keep up with the giving of food to eat or play with. My ds wouldn't eat until he was about 7.......

Your ds's site doesn't sound at all right - there shouldn't be pus, please get someone who knows about gastrostomy sites to take a look. Your GP probably won't have the right knowledge to do this
Once it is better then ask about barrier creams - we used Cavilon (but don't use it on an infrcted site).

I think the drops Herecomes mentions for overgranulation would be Sofridex which is normally used for ear or eye infections and comes as drops or cream. We did find that with ds we had a bit of a cycle going for a while - he would get an overgranulaterion, we would treat it and then he'd end up with an infection, and so on.

Isitme1 Tue 05-Jun-12 08:42:39

I clean it twice a day and it was fine yesterday?

I've never tried blended diet but I have however mixed some herbal immune system stuff with baby food and put it down the tube.

With regards to keeping tube out of the way:
Cut a small cut underneath to the side of the peg site ( ds tube is in middle above belly button so I've cut holes on the bottom right hand side) and I either tuck the rest into his pants at the toP ( in-between pants and vest not skin) or I use mipore tape and tape it to vest.
Just make sure it doesn't pull ( normally doesn't)
X

Isitme1 Wed 06-Jun-12 15:25:13

Venting tips anyone?
X

Sneezecakesmama Wed 06-Jun-12 18:26:27

Sorry don't know anything about venting.

Though we were going great guns today. dGS at some baked potato and cheese, followed by puréed fruit, then a chocolate petit filous......then he puked the lot. O well 'twas a bit adventurous maybe! At least we could top up with the peg afterwards! Would have been soul destroying otherwise.

Isitme1 Wed 06-Jun-12 19:12:18

That is one 'perks' of the dreaded peg.
The first day he had it in I was in awe.
I just couldn't believe he had 15 oz in 24 via tube.
By mouth at most he would of had an ounce.

Absolute life saver!
But I do miss feeding like a normal child would take.
I feed my nephew and I just forget how I dont have to fight to feed a normal kid.
If that makes sense?
X

2old2beamum Wed 06-Jun-12 19:23:37

Yes what you say does make sense I think mothering is nurturing and doing it by tube seems unnatural but your LO's needs comes first which is being a mumsmile
Re venting I gently aspirate with a 20ml syringe or just hold the syringe with no barrel just above the abdomen and the air comes out.

Minimoan Thu 07-Jun-12 00:28:47

Re: Venting

Use a 60ml syringe - smaller syringes cause more 'pull' on the tummy. Try to recline child/lie flat if possible. Give tummy around button a gentle massage if necessary to move air. Encourage child to bring knees up to tummy (if possible) or make them giggle (forces air out)!

Method 1: Attach to the tube and gently pull back plunger.

Method 2: Attach syringe without plunger to the tube. Hold syringe longer than stomach and allow gravity to expel air.

Hope this helps

Mini-moan

Isitme1 Thu 07-Jun-12 07:36:15

Thanks for that.
In the hospital they just said try an empty syringe and that will do the trick.
How's everyone today?
Ds has been awake since 4am :|
X

2old2beamum Thu 07-Jun-12 22:18:59

I too find the enpty barrel works for DD. However with DS who has a jej tube I have to use to use a 20ml syringe as he has to have his stomach aspirated 6 hrly.
On the subject of jej feeding I have been advised to give drugs at the rate of 4mls/min. He has 26 doses/day in total total 2x 50-60 mls a time divided 8-5-9-4 doses IYSWIM. Problem is I have been told to give 5ml flush between each drug which will mean he will need ovet 100mls at 06.00 &1800 hrs needless to say I don't. What do you do? He can only tolerate 53mls/hr milk

Tooloudhere Thu 07-Jun-12 22:46:34

2old not jej but we have g tube with very limited tolerance for volume. When it comes to meds we don't do all the flushes as like you say it is impossible. There are some that really need the flush which we do. Can you do smaller flushes or find out which meds really need them (tube blockers) or need to be separated.

The only time causes trouble is when in hospital as you they love everything done to the letter, I.e. their letter. They accept that it just doesnt happen with ds so the compromise is that I do his meds as I would at home, they prepare and bring the syringes according to their rules and I administer so they arent doing it. Part of the argument they used was that the meds shouldn't go together but how would it be any different to taking them orally? If meds should not be together and I know some can't then they need to be done at totally different times.

Mini rant over, can you tell this is a bugbear of mine? Just love impractical protocol.

Oh and venting if required is just an empty 60ml syringe held above tummy, works well for us. On a note of caution be ready to clamp quick if your dc looks like they may sneeze when there is an open syringe in place, the mess was unbelievable.

Isitme1 Thu 07-Jun-12 22:57:02

2old-
Ds is on 175 over the hour x 4 a day plus flush. He's doing very well with tolerating it apart from night feeds.
He can eat by mouth but his aversion is they bad that all he's had today is plain chappatti. He's on reflux meds.
They are doing the gastric emptying scan to check motility if gut ( any experience anyone)
With him having 700mls a day of a pre-digested milk you would think he would of put weight on but nooppe.
He was doing good on baby food into mouth via syringe.
Ive been thinking about using baby food down tube.

Oo can you explain aspirate too please blush x

Isitme1 Thu 07-Jun-12 22:58:18

Tooloud-
Dr at hospital had to tighten the peg thing and he opened clamp and ds stomach juices went flying lol
X

rosielum Fri 08-Jun-12 07:15:43

Isitme, have a look at the blended diet uk facebook group...lots of people start with putting baby food(with oils etc added for cals) down the tube then end up moving on to blending food to put down the tube. Its worth thinking about if your DS is not thriving on formula.

Isitme1 Fri 08-Jun-12 09:45:20

I will look at that.
He's had no oral breakfast today.
He had no oral intake apart from plain chappati ( the piece he had was no bigger than little finger)
Thanks for that
X

2old2beamum Fri 08-Jun-12 13:04:58

Isitme DS 13 is on 1100 mls/day but with swimming/showers/meds he is usually shy of this he is small for hes age (9-10) but sa i am the sillly fool who humps him around if DH not here I am not overly worried, his hair is shiney nails strong and skin good. Try not to worry too much about his eating.
To Aspirate is to empty stomach of gunk as he refluxes and gets rid of air.

TooLoud yay another rebel, I've been doing it for 2 years and have not yet had any problems (famous last words) Like you in hospital I just put up with the sharp intake of breath and the sucking lemons lookshock
Keep smiling everyone smile Guess who has recently learnt to do smileys

2old2beamum Fri 08-Jun-12 13:09:28

BTW liquidised was how we tube fed children years ago didn't seem to do them any harm and they thrived (not babies)

rosielum Fri 08-Jun-12 15:32:21

Yes before formula all tubies had actual food down the tube. There is an excellent new book called 'complete tube feeding' by Aadhaar O'gorman that is so useful.I think formula is fine but real food will always be more nutritious. Dieticians are not trained in this any more so see formula as the only option!

Isitme1 Fri 08-Jun-12 15:44:03

Oo ok. The only reason why I worry is I just don't want ds to go completely tube fed. I want him go have oral diet too. We've been out today ( town) and I know fast food is no good but he likes kfc chicken popcorn. Which he put the food in his mouth and spat out.
I've bought noodles for tea ( another fav) let's see if he eats them or just sticks it up his nose or in his ears ( another fav for him)
His dad doesn't understand the stress that comes with it all. He just likes blaming me. He said if ds stops eating by mouth its your fault as you went ahead with it ( he's not here he's in a diff country)
I've been told that his intake was soo low and water intake was close to nothing they don't know how he survived for so long. Gp wouldn't listen to us.
X
Rant over (ish lol)
X

Isitme1 Fri 08-Jun-12 15:45:29

I forgot what I was saying lol.
I meant to say if I start with a bit of baby food I'm scared it will block tube. He's got a corflow peg and it would mean surgery of all else failed
X

rosielum Fri 08-Jun-12 17:10:22

Isitme, yes we have a different situation in that my daughters tube is for life and I'm looking to find the best quality version of tube feeding for her.
It sounds like you have done the very best for your son, you couldn't let him carry on basically starving and a peg is so much better than an ng tube for the orally averse. Have you met with your DSs paed recently? Is he seeing a SALT for feeding therapy?
When you say he is uncomfortable at the last feed maybe the overall volume of feed is too much for him? My daughter was like that when she was on a feed that required her to have a larger volume than she could tolerate comfortably. Sounds like you really need to know what his gastric emptying/motility is like.
Hugs to you x

Isitme1 Fri 08-Jun-12 17:18:08

We are seeing his gastric pead On the 21st this month.
Ive not recieved a letter just a txt lol.
If we go ahead with the surgery they have said tube will bs permanent.
He's had no tea.
He won't eat the noodles.
sad
I was spending atleast £100 a week trying new food for him to eat.
He won't let me brush his teeth either.
Salt is involved. Seeing her beginning of next month again I think.
She is encouraging messy play. He won't do it.
She said kids who have food aversion don't like get face or hands dirty.
To me it's like he's looking for another way for him to eat ( putting food up nose and ears) as he knows it hurts if it goes down throat.
He's happy just sat there in his high chair.
He's chucked rest of food on the floor
Hugs
X

Isitme1 Fri 08-Jun-12 17:27:41

Success!
I had a jar of apple and pear baby food. I watered it down with warm water and tested it to make sure it wasn't too thick.
It's gone down fine smile
Just about a 1/4 of a jar :D
X

2old2beamum Fri 08-Jun-12 17:37:02

Well done Mum and DS grin
Your chats have kept me going, all of you.

rosielum Fri 08-Jun-12 17:55:03

What surgery is it your DS is going for? Feeding tubes needn't be permanent and your DS is so young still. SALT provision is so poor on the NHS. I have an 11mth old as well who just eats normally and i couldn't believe how ease it was to feed her when we started weaning as it had been such a nightmare with DD1. It's very stressful isn't it as its such a primal thing feeding your child.x

Tooloudhere Fri 08-Jun-12 17:59:10

The thing that I hate the most about having a sn dc is that it seems as though others think they have more of a say in your child's upbringing than you.

I can't at this point do blenderised diet due to allergies and there being too much else going on for him but it is something I have considered and will probably look at again. If it is done safely and with consideration then IMO no professional should be objecting. I wouldn't take anyone telling me that I couldn't feed any of my other children anything other than formula. I just hate that people think they 'own' him, hell I don't own him but as parents we should get the casting vote, it has took me along time to stand up to that outside of the house.

2old (no offence meant seems weird shortening your name to that!) I am a rebel and proud, opposite to my younger years I like to think I rebel for a reason now. Just for you smile

rosielum Fri 08-Jun-12 19:35:56

Yes so true Tooloud. My DD had a rectal prolapse because she was so constipated on formula and when i told the dietitian she said 'well with your daughters level of CP constipation is to be expected, we'll put her on miralax'. That was it for the formula, DDs diet now always has plenty of whole grains/oils/free water and prune juice if needed, when I told the dietitian she acted like i was being some kind of indulgent parent. I feel like the 'professionals' all too often don't have the best interests of the child at heart but rather are following protocal. rant over!

Tooloudhere Fri 08-Jun-12 19:51:17

Completely agree with your rant. We do love our dietician here though she is lovely and I get a fair amount of say in what we do with him, she may have adopted this approach through experience with me though!

Has the blended diet resolved the constipation for your dd? Ds gets terrible constipation we can't manage it well whatever laxative is used, poo, laxatives and their combined effects should be my mastermind topic.

Tooloudhere Fri 08-Jun-12 19:57:06

Back again, out of interest what blender do you use. Will a normal one do or do you really need one of the £££££ vitamix ones I have read about?

rosielum Fri 08-Jun-12 20:16:21

Yeah we have a vitamix and its the best thing i've ever bought- i believe you can get a medical discount. Blendtecs are also great and i've heard of them giving away reconditioned ones.
I now totally manage my DDs poos, the key has been the right balance of whole grains and water but the factor that makes the biggest difference for her is enough oil. I started off putting 5ml of flax oil and 30ml of prune juice down her tube and i could not believe what came out. She now goes every morning like clock work. never thought i'd spend so much time thinking about/discussing poo ha!
'blenderized food for tubies' has a facebook page and also a forum that has been really helpful to me. I sound like a proper evangelist..oh well

Isitme1 Fri 08-Jun-12 20:20:19

Rosie he's going for corrective reflux surgery and a surgery to help his tummy empty quicker and maybe tonsils out too.
He suffers from sleep apnea and gets a lot of chest infections.
Immune system down due to meningitis and septecmia and lack of nutrition too.
You wouldn't think something as common as reflux could do so much damage!
My prince isn't talking yet. No potty training either.

I do think your right when you say proffesionals are going of protocol.
I've not said nothing to dietician about baby food.
She's on annual leave for 2 weeks. You would think that there would be like a step in dietician?
I keep getting wrong syringes from delivery company and the only person who can rectify it is dietician.

I'm very glad I made this thread. We are here for everyone :D

I dont drink so have a brew instead lol
X
He's refluxing as I type this. Keeps being sick ( into throat and mouth but swallowing again)
X

rosielum Fri 08-Jun-12 20:34:39

I don't drink either..peppermint tea for me! A fundoplication (guessing thats what it is) and pyloroplasty are pretty major surgery. Your little guy has been through alot. Which formula is he on? Could you try a different one? My DD used to reflux like that alot by the end of the day and itwas volume issues for her. Also have you tried thickening his feeds at all? you can use just baby rice (or i used to use plum baby four grain cereal ) so atleast it stays down abit more.x

2old2beamum Fri 08-Jun-12 20:51:47

Tooloud please do not worry about 2old it is a very apt name as I am an OAP with a 6 yr old grin

Itisme very interested that your DS had meniingitis it has ruined my beautiful DS's life. What a vile disease. Unfortunately a fundoplication was not possible so we had to go down the jej route. [flowers] for starting this thread!

Until we talk again hope all goes well XX

2old2beamum Fri 08-Jun-12 20:52:30

OOPS thanks

Isitme1 Fri 08-Jun-12 20:55:47

Yep then ones.
It doesn't physically come out its and up and down his food pipe.
Hes on neocate advance as it's a pre-digested milk.we've tried peptisorb, fortini, nutrini, pediasure and neocate.
X

Isitme1 Fri 08-Jun-12 20:58:57

Thank you 2old ( need to get you a new nickname lol I feel cheeky blush )

X
Hope everyone has a good night.
I'm going to be nosey and ask
Why are your lo's tubies?
If this question offends anyone I'm sorry.
A bit of background helps to see of we can relate more ( ? If that makes sense lol)
X

2old2beamum Fri 08-Jun-12 21:33:59

No in a way quite like 2old----makes me feel like a piece of antique furniture probably riddled with woodworm
DS post meningitis complete aversion to food---struggled for several years weight gain dismal Oddly enough when they inserted PEG they found his stomach in his chest, nothing to do with meningitis.
DD has Emanuel Syndrome had massive cleft palate was repaired but still managed to aspirate.
Now I'm going to be nosey how else your is your LO affected by the evil meningitis XX

Tooloudhere Fri 08-Jun-12 22:00:18

Ds is a tubie because well we don't know! He is undiagnosed, some sort of genetic problem most likely. He has dev delay, deaf, visually impaired, doesn't grow and a whole host of other medical misdemeanors to keep everyone on their toes.

Whilst I find it very sad I resolve by saying it is who he is, how he was made so to speak and that he is loved for who he is. It must be very hard to have a childs problems caused by an illness that isn't how they started out life. Don't mean to offend anyone by that but we never had a glimpse of anything else. I know a family whose son was deafened by meningitis and I know they find it hard to know he had hearing and lost it.

2old you made me laugh never heard someone say they like the thought of being riddled with woodworm!

Isitme1 Fri 08-Jun-12 22:02:34

My ds had it at 10weeks if age.
Just after being diagnosed with reflux.

The main thing that meningitis effected was immune system he keeps getting ill.
Hes due for another hearing test but I think it's due to his speech and language being delayed.
His behaviour is a bit erratic but not too bad atm.
He's a Tubie due to food aversion and severe gastric reflux, failure to thrive and poor gastric emptying.
X

Isitme1 Fri 08-Jun-12 22:36:57

Awww tooloud. Google deletion syndrome ( or something like that) Ive read a lot about it but it's not really ds. Might help you though?
He's just scared of food.
It really gets to me when he's like this ( not eating) but there's not much left for me to try.
I remember taking him around the block every 3 hours for a bottle in his pram so he would take a few oz.
Wow. Ive tried singing, dancing, playing outside, playing inside? Food time in pram at the park, picnics, food time in car, family food tv, in front of telly, up in our room, at next door neighbours, in restaurants, in town... List goes on but I've realised that he just isn't comfortable with it and it's just tough.
I'm a shopaholic lol. I try and fill his 'gap' by buying him things.
Hes got a wonderful wardrobe, lots of toys and books. Loads of different plates, cups, glasses, bottles and cuttelry. His dad isn't here due to visa so it's another thing missing in his life.

Does that make sense?
Hope everyone + lo's doing well x in his life.

Does that make sense?
Hope everyone + lo's doing well x

2old2beamum Fri 08-Jun-12 23:17:56

Isitme my DS contracted pneumococcal meningitis at 8months old. Similar to tooloud he is is profoundly deaf, completely blind also. cerebral palsy and poorly controlled epilepsy, he is totally dependent on us. Please do not think we are moaning we just love him. He gets brilliant support from the LEA and the NHS. But has no SW
Isitme like you buy them so many things Is it to compensate?
Now off to do meds then BED so I hope you all have good nights sleep XX

Isitme1 Sat 09-Jun-12 05:54:47

Don't worry about letting it out. It's healthy lol.
We are here for you.
I think your ds is very lucky to have a mummy like you!
Hope you all had a good night
And good morning to all
X

Isitme1 Sat 09-Jun-12 05:58:28

Yep I'm trying to compensate but obv isnt really working.
Just feels like I should of gone private at an earlier stage. It never occurred to me about going private. I should of got ds more help but gp wasn't listening. I was at the doctors every 2nd day saying ds not eating and gp would say 2 oz a day is enoughconfused

X

Tooloudhere Sat 09-Jun-12 07:59:33

Morning, I think guilt to one level or another is part of being a parent isitme, you just always want to do the best for them. Hindsight is wonderful but you should not reproach yourself. We still have issues thinking if we are under the right team, our ds is so complicated and sometimes we just don't seem to be 'maintaining' him in the kindest way but nobody seems to know what to do. I know Dh has looked into specialists here there and everywhere and we don't know whether to move care or not. Don't get me wrong our team are all very dedicated and seem to care very much about ds, I am trying to say everyone has doubts especially when things aren't easily resolved.

2old, I think we have compared ds's before ( I know you have a few with sn ) but can I pick your brains? Ds has issues with sshhh clean things especially his bedding. I know it's a sense thing but if I try putting him to bed and he smells washing powder he screams for ages. I've tried doing the pillow case, sheets etc separately so everything doesn't change at once.

I leave it along as I can but last night he had clean pyjamas (after 4 nights I insist) he was not too bad when I put them on him so I thought I got away with it but no he was awake four times in the night trying to rip them off. He is still only 1 so a baby really, with communication being an issue it is hard to explain anything.

Isitme1 Sat 09-Jun-12 08:22:02

You've probably tried this but can you get an unscented washing powder for ds? And buy him the same pair of pjs? If he had 2 of everything it may just help him settle a bit?
He might not like certain things changing?
X

Isitme1 Sat 09-Jun-12 08:27:03

The only thing ds will let me put in his mouth is a dummy.
He doesn't let go of it.
He won't have breakfast.
I've resorted to giving him crisp to encourage him to pick up and atleast play with but nope. On the odd occasion he will put a tiny bit under his dummy.
sad
Rant over lol
X

Tooloudhere Sat 09-Jun-12 09:04:01

His pjs are all the same so they feel the same to him. He is ok with daytime clothes as he spends all day with me. I think it is because he can't hear and see well that he uses his sense of smell more and doesn't like it when it doesn't smell of his bed but you can't not wash his bed forever.

Do you have a feeding specialist/ salt? It sounds like you really need someone to help you decide a strategy for your ds and food. I am no expert and please don't be offended it sounds like understanderably you are very emotionally involved in his eating. I just wonder if he picks up on this and feels pressure.

If it were me I would stop trying everything and do the same thing every day. Put him in his highchair or whatever you use three times a day at meal times put food in front of him and leave him to it. No coaxing, no pressure if he eats anything fantastic, if he touches it great, if not you have peace of mind he is getting calories through peg. As I said this is just my thoughts, ds isn't allowed to eat but I have quite a few children one of which had severe reflux and food 'issues' and this was what we were told by specialists then and it worked.

Isitme1 Sat 09-Jun-12 09:19:22

I don't feed him myself.
He prefers food that he can and eat and control.
I do worry but I do understand that if I let him see I'm stressed around feeding times he might pick it up. Hence me venting here lol.
I put him in his high chair. Put some food in front of him and if its something that requires a spoon ( breakfast) I let him see what I'm doing. If that fails I put some food in front of him and get out of his sight.
If he eats he gets praised if not then I don't say anything and just start with pump feeding about an hour later.
X
And I think your right with your ds sense of smell is strongest so he would want his comfort in that form.
Does he have a comfort blanket? If not try putting your tshirt in his bed the night you change his sheets and pjs so he can feel your presence there
X

Tooloudhere Sat 09-Jun-12 09:36:18

He does have a comfort blanket which I never wash! I may try sleeping with his clean sheets before I put them on his cot though, I never thought of that.

It sounds like you are doing everything you possibly can, I didn't mean to offend I just know we were lucky to get such help from a feeding specialist as they are not always available in every area. If I am honest even 5 years down the line there are some issues still with texture and new foods but generally a healthy diet is eaten which I didn't at one point think we would see.

2old2beamum Sat 09-Jun-12 10:07:50

Just catching up with your posts after doing morning chores.
Tooloud have thought about your DS before our adopted children finally came to live with us i slept with a small blanket and gave it to Foster carer to give to the child to sleep with personally I think smell is very evocative so your idea sounds good. With our last DS being deafblind I was wearing Chanel No5 (rich bitch) when I met him and now I wear it all the time so he knows it is me. School also use a Hanky sprayed with it so he knows he is coming home.
Itisme I really understand your guilt how can you reward a child with a chocolate button etc if they hate food.
Take care XX

Isitme1 Sat 09-Jun-12 11:11:57

Tooloud I know you didn't want to offend ( which you didn't ) your trying to help. Thank you.
I guess you've thought of everything that I could suggest.
Hmmm when we last saw ds dad ( we went to see him) I told hubby to wear his vest a little longer the day before we left and ds wouldnt sleep without it until he was sick on it and had to wash it.
He played hell.
Then I got him a scented dumbo from Disney shops which he wouldnt sleep without out. He still uses it to this day.
X

sneezecake Sat 09-Jun-12 11:23:51

DS also has CP, (starved of oxygen at birth) and a food aversion. - he used to vomit at the sight of his bowl hmm he preferrs finger food, sandwiches are a firm favorite, however he has all his teeth removed about 18months ago, 4 molars have grown since but he finds chewing very difficult (as you can imagine) so he get very frustrated with the sandwiches and finds it easier to feed mummy, (or the dog) and after 6 months of not putting any weight on we decided to go for the gastrostomy I must say in just over 2 months he has put on nearly 2kg!

We visited a special school before DS went to nursery, they used different smells for different days of the week, I think monday was strawberry day!
I wonder if you could use a smell he associated with going to bed, then hopefully the clean smell would be missed (wishfull thinking?) try using non-bio washing powder with comefort pure fabric softner, I find it has no scent (I suffer with eczema, and my skin will only tolerate non-bio stuff)

We also do the shopping stuff to compensate for what he cant do (so does mum, infact she is worse than us!)
we are going on holiday tomorrow for the first time since the PEG think we need a bigger car!

Tooloudhere Sat 09-Jun-12 12:47:20

Thanks for all the suggestions, we do a lot of is bedtime routine on smell. Bath with lavender, cuddles with blanket which has its own particular scent!, get him to hold the curtains as I shut them with him. He is such a stickler for routine his bed smelling different offends him. I have thought of a cunning plan, I am going to put clean sheets under his original ones for a few days before whipping the tops ones off. Let's see if that works, we already use non bio for washing.

Sneeze cake I hear you on the holiday thing, I empty a massive plastic toy box and use that to take all the feeding stuff but it does take a lot of room and planning! We fill our car with children so normally end up taking two cars to fit all our stuff in!

2old2beamum Sat 09-Jun-12 13:15:55

I am sure a lot of you will know this but most feed companies will deliver milk, giving sets etc to your holiday destination we have done this for several years. Some companies will deliver abroad, have only dared to do this once and DS was on TPN I was a dribbling wreck.

Tooloudhere Sat 09-Jun-12 13:34:37

2old are they reliable at doing so. We have thought about using this service but I have never quite trusted them to get the right stuff to the right place. Knowing me I would probably end up taking my own stuff as well just in case which defeats the object really.

2old2beamum Sat 09-Jun-12 15:20:11

Tooloud they have never let us down but I always take 2-3 days worth with us. I always get the owners to ring us when the delivery arrives. TBH don't think we would get all the feeds in our pantecnican (?sp) and I refuse to take 2 cars.

Isitme1 Sat 09-Jun-12 15:23:47

Awww that's put a smile on my face!
Hope you have a good holiday.
I bought ds some new clothes yesterday. Couldn't wait to put them on so he's got them on today lol.
That's a good idea with smells for certain things and days.

Ds keeps getting battered by dn angry
Really battered!
He keeps smacking him on the head really hard with toys
X

rosielum Sat 09-Jun-12 17:43:30

Hi everyone, hope you've all had a good day, i don't get on the computer much in the day as have DD1 (tubie) and DD2 who's 11mths so my days are full on child care at the moment! My DD1 has cp as a result of a birth injury and she does have a safe swallow so in theory can eat orally but in practice no way can she eat enough to sustain herself. She started to refuse any food at all once she had her ng tube put in at 14mths and i backed off totally thinking its up to her if she wants to eat or not. but actually the last few months she has become fascinated with food and wants to try everything. I put this down her reflux/constipation being resolved so food doesn't look painful any more iyswim.

Isitme1 Sat 09-Jun-12 20:14:29

Seems like she is comfortable again with food which is brilliant.
Ds atm trying to go sleep.
He was phyisically sick today in the car. I had no spare clothes ( just a quick run upto tesco!)
So I bought him a pair of clothes to change into and did the shopping.
Dniece was with us and she looked like she was going puke too lol.
He's refluxing atm.
I asked him does it hurt. He noded. I put my hand on his face he didn't respond, I put my hand on his tummy and he noded again.
Made me all teary eyed!
X
How was everyone's day?
X

Isitme1 Sat 09-Jun-12 20:30:14

Just wanted to ask:
1 has anyones dc had the gastric emptying scan?
2 if it shows his gastric emptying is as slow as what I think ( 10 hours later food coming up undigested- exactly how he ate it) then would the do fundo? I thought fundo made stomach smaller so therefor harder/ more uncomfortable for the child?
Thanks x

2old2beamum Sat 09-Jun-12 20:32:30

Toloud have been mulling over your DS's obession over clean night clothes whilst having Saturday nights [wine} x3. Am just wondering about this
1)3 identical prs of pyjamas
2)3 identical duvet covers,sheets and pillow cases.Whilst using 1st set
put other 2 lots under bottom sheet and 2 pairs of pyjamas under bottom sheet so when they need changing they will smell of him. Just a thought may be speaking out of my arse (quite usual for me[embarrassed])
Love to all

rosielum Sat 09-Jun-12 20:43:14

The fundo basically stops vomiting, if the person has the urge to vomit they will gag still but the 'wrap' at the top of the stomach tightens preventing the stomach content from coming up. I've heard really mixed reports from people on there effectiveness in treating reflux. I personally would want to do alot of research on them before i let my child have one. sounds like you'rethinking the reflux is secondary to something happening further down the digestive tract?

Isitme1 Sat 09-Jun-12 21:02:18

It's just a bit confusing.
He's defo got reflux but I'm questioning has it got the reflux because of slow gastric emptying.
If his food isn't being Digested then the food has to come up but he's got mainly silent reflux.
He was sick today and it was horrible. But he felt better after it.
We've had plenty of times where he has had food 10 at most 12 hours later the food has come out like that- hot dogs, noodles, chips... Exactly how he's had the food.
He's on neocate atm and it's pre-digested so it should be out of hides system within 30mins as it's light and liquid.
He had tummy ache so I thought right vent the tube but it had been round about hour- hour and half and it's still there in his tummy.
X
2old could lo not have fundo due to slow gastric emptying? Is that why jej tube is used?
X

2old2beamum Sat 09-Jun-12 21:09:05

Just read Isitme post, slow gasric emptying and reflux resulted in J-peg no scans as it seemed obvious he has been ok since providing he is handled with kid gloves but this may be due to other problems. Fundoplication not possible due to minute stomach,

Isitme1 Sat 09-Jun-12 21:12:46

How is jpeg different to gtube?
And kids gloves? ( are you showing your age :D lol)
X
I'm sorry if I offend you with asking so many questions but I like to know what I'm up against
X

Tooloudhere Sat 09-Jun-12 21:17:28

Evening all,

2old bless you for mulling over ds problems. I posted earlier something very similar so if you are talking out of your arse we both are. His pj are all the same so they feel the same on. My thoughts were to put clean sheets/covers under his existing one for a few days before changing them over.

I do wonder sometimes if I am indulging him too much and making him inflexible which will cause problems for the future but I don't know what else to do. I would hate to have my senses reduced/taken away then have to make sense of the world. He has a lot of pain and this makes him upset but we have reduced his frustration and lack of understanding screaming a lot recently by using cues for activities. An example is he would scream and roll around if we were trying to put his coat on, if we are going out now we get the car keys put them in his hands and sign car with his hands then he is happier to get ready, well unless he doesn't want to go in the car!

Sorry for sidetracking everyone for all this talk that is not about gastrostomies and tube feeding.

Isitme1 Sat 09-Jun-12 21:30:09

Tooloud your looking for answers too so don't be sorry.
Anyone is allowed here. Tube related or not we are here and will try to help as much as we can ( I'm not much use lol sorry)
X
brew anyone?
X

2old2beamum Sat 09-Jun-12 21:33:40

You Cheeky monkey, kid gloves ---handle with care OK I am 68 but only in the early stages of dementia grin This will now self destruct when readwink
A j-peg goes through the stomach via a g-tube so food by passes the stomach and then the child should be unable to vomit milk. The downside is it needs to be fed slowly (mine just 53mls/hr so nearly 24/hrs a day) everything needs to be as sterile as possible. Just another thought don't think you could use pureed food. HTH

Isitme1 Sat 09-Jun-12 21:40:04

Sorry :p
I'm 20 lol
That's what I thought it was
How's your day been
X

2old2beamum Sat 09-Jun-12 22:11:16

Day not too bad thanks DS chest infection so sleeps all the time----easy for me but I don't like it!!
The rest D.syndrome 31,27,23 miffed over all the football, where is
Casualty sad them. 6yr old Emanuel Syndrome just happy to do her own thing
Oh hell I could be your Grandma grin or shock
Have a good night says she hopefully

Isitme1 Sat 09-Jun-12 22:22:32

Awww bless.
There's something that my inlaws use and it stinks but does the trick.I use with ds all the time when he's got a chest infection.
If you know any pakistanis/ Indians ask them if they can give you some iing.
Just saying the word I can smell it lol.
It smells like cat Piss lol.
You put it in a bit if it in water then you rub the water on the bottom of feet, palms, chest and back.
It works.
You have to keep los warm though x

Tooloudhere Sat 09-Jun-12 22:32:51

Does it make you feel any better to know you are only old enough to be my mum! (runs and hides) seriously though I am in awe of where you get the energy to deal with all your kids needs. I only have one with sn and one that would probably be classed as sn but I don't oh and a few 'typical' children and I am knackered.

Isitme1 Sat 09-Jun-12 22:57:59

My grandma is 65 this year lol. Mum is 41.
Your like the kinder, more informative gran :D
My gran is very hmmm whats the word?? Makes a penny out to be £100! Over reactive?
X

Isitme1 Sat 09-Jun-12 22:59:29

And yes I agree with tooloud your doing fantastic!
Your a proper role model!
( to add to my last post- my gran can only just use a mobile lol she doesn't know how to use camera on it though! )
X

Isitme1 Sun 10-Jun-12 09:47:13

Morning everyone.
Ds had a dreadful night last night.
He was crying 'hurt'.
I don't know if it's his peg site ( crusty this morning like puss dried up)
Or his wee.
It's strong in smell and isn't urinating very much. He keeps grabbing his nappy and smacking his sides of his back. I had his nappy off yesterday day and he cried when urinating.
X
How was everyone's night?
X

Sneezecakesmama Sun 10-Jun-12 10:51:02

Tooloud. I think you are doing the right thing with working round DS s sensibilities. His world is mostly sensory and children with SN often need a gentler and more intuitive approach. There is nothing to be gained by causing distress. I don't like NT children being left to cry, so why often more sensitive SN ones?

Isitme I wonder if DS has a wee infection sounds like it to me. Increase his fluids and if he is still distressed I would see your emergency dr.

My daughter says I am spoiling DGS? Moi! I have only bought 5 of the 7 buggies he has had.....so far! We won't mention all the toys blush

Sneezecakesmama Sun 10-Jun-12 11:06:48

Oh forgot to say re gastric emptying. Little isitme certainly needs investigating if this is the case. Some of the tummy pain may be due to this slow transit causing a build up of gas. I think DGS has a weak muscle at the top of his stomach which means he vomits easily if his tiny tummy gets full, but his dad and grandad suffer with reflux (strangely dgs doesnt at the moment).

rosielum Sun 10-Jun-12 11:36:59

isitme, how much free water do you give your ds? Lots of water really helps gut motility and can also help with volume tolerance of food.
sneezecakesmama, my dd went through 5 buggies before we realised she needed a proper sn one. and toys, well if we find one she can access properly then everyone wants to buy her one!

Isitme1 Sun 10-Jun-12 12:37:02

I'm going after his pump finishes to the walk in centre to get urine checked. He's had urine infection in the past and I'm a kidney sufferer so I know how much these hurt.

Sneezecakes you can come and spoil us lol.
We've only got the 1. Quinny buzz 3. Love it apart from handle won't go down angry
I'd love a stokee pram or bugaboo :D lol
X

Isitme1 Sun 10-Jun-12 12:38:57

Yep he has a fair bit if water. He doesn't really tolerate it too well when it goes in. If I do bolus water he's uncomfortable and if we do more flushes he's not as bad as he is with bolus but still in pain.

X

2old2beamum Sun 10-Jun-12 13:54:42

Isitme poor little chap it does sound like a wee infection hope the centre sorts him out. Wee infections are awful
BTW thanks for Indian/Pakistani remedy. Used to live in the East End but we now live in a very predominately white area (the only mixed race peron is our DS) so no one to ask.
Did I have a good night no dearest darling daughter managed to disconnect feed what a mess and Eau De Peptisorb is not my favourite perfume.
Hope you are all okish XX

Sneezecakesmama Sun 10-Jun-12 14:06:21

Rosie. He's got a SN one too, swifty! Think I have a problem with buying stuff for the DGS to make up for my DCs being deprived of material things as I was a sahm as I was better for them than a world of stuff....I hope grin. Latest one is a phil and teds smart buggy...small enough for a Toyota aygo...that's my excuse! Would love to spoil everyone to make up for all the worry SN causes!

Dgs sits fairly well in most buggies apart from extending his legs and ending up sacral sitting. Just tip him up and shake and he's right again!

Sneezecakesmama Sun 10-Jun-12 14:14:38

2old. You sound like a late friend of mine. She adopted a DS baby with such serious heart problems she was not expected to live. A mixed race Afro Caribbean girl, a mixed race Asian girl and a boy whose parents both had mental health issues plus 2 of her own. She worked full time, studied for a masters (said it took her mind off all the hard work at home!) smoked like a chimney and had a heart as big as the euro debt. Her DS girl made it to 26 then passed away and my lovely friend had a brain haemorrhage and died a month later.

So......I hope you are looking after your health and not putting your family's needs first all the time. I can advise you as I am a nurse and a gran, and it entitles me to lecture and be smug !!

2old2beamum Sun 10-Jun-12 15:36:27

Ok Sneezecakesmama grin don't lecture me I too am a gran and a nurse kids, adults and midwife (I was at my 1st adopted son's delivery so I blame him soppysmile how our lives have changed
I will now give you all the history I will say this only once
3 homegrown ---flown the the nest
Adopted aforementioned DS with DS thought wouldn't be nice if he had a brother like him so along came no2 sadly he died at 16 months. At funeral his SW said we have a 3month old with DS she too had heart defect now repaired but still problematic (pacemaker) Then ?why came no 4 beautiful little girl ds and heart problem. THAT WAS IT hmm
DS made redundant so decidedto adopt complex needs child so along came no5 sadly history repeated itself she died at 23months. We were then approached to take Stef and I said OK as long as he didn't pop his clogs on us.
After struggling for 10 years, 5yrs on TPN he too died it was horrendous.
Then along came no7 (very hard decision)but am so glad we did as all agencies had let him down (post pneumococcal meningitis deafblind etc)
front door now locked haha 4yrs ago 'phone call we have a dear little girl no one wants her (Emanuel Syndrome)----rest is history have now thrown away front door key
You can all wake up now
Yes I do take care of myself but have ?hyperparathyroidism
Always read your posts interesting and helpful so pleae keep them coming.
meant to say earlier sorry about your friend life is a bitch,regards to your DS and DGS he seems to be doing so well. Never written such a long post X

Sneezecakesmama Sun 10-Jun-12 19:37:20

Omg 2old think you are amazing. Bet you hate people saying that! Can't imagine the awfulness of losing 3 of your babies, everyone's worse nightmare. You can cope with anything so long as they are still here with us. Surprised you are not mum of the year. I am a rank amateur by comparison. A mere 3 years of a fairly straightforward CP ( if there is such a thing) !

Keep on posting as you have experience in practically every area of SN as well as NT children and it's this depth of experience which helps everyone to cope on a day to day basis. Def no more children - though I think SWs always have got you in their sights!

Isitme1 Sun 10-Jun-12 19:41:05

2old you really are an inspiration! {hugs}
thanks
Please do look after yourself

Went walk in centre at 1.30
Just got home angry
I walked in gave details and asked for urine collector. Put it on him and he wee'd in it pretty quick. ( had feed hour before we left plus lots of water lol)
He has infection.
Had to go out of hours gp
Horrible wait there
Ds was hungry but wouldn't eat anything we had.
He was due pump Feed but didn't have it with me due to leaving home at 1.30 thinking I'd be home by 5 lol.

All pharmacies were shut :|
Had to go into town to get his mess
X

Isitme1 Sun 10-Jun-12 20:23:07

The doc thinks ds is starting up with what me and my mum have:
Kidney probs.
He's had 2 uti's in 5 weeks.
Plus protein in-between.
....
X
How much water does everyone use(flush) / give during day?
X

Tooloudhere Sun 10-Jun-12 20:35:51

2old [flowers] you sound like an amazing parent, what an lovely thing you have given to your children. I imagine also they have given you in return, I know all our children do but ds especially has shown us a lot about life.

Sneeze I have pushchair issues here too, I have got through a lot. I have always been an intuitive parent I hope but some professionals are making comments about how I can't carry him around forever, which I am aware of but he needs it now so I carry him a lot. They think it would be better for him to seat in his nice seating system alone all day, umm I think not. In the next breath they say how much progress he is making and exceeding expectations of him, well done mum. Geeze let's put two and two together somewhere.

Isitme, we don't do big flushes as such as he just cant tolerate it, he doesn't really tolerate what we do put in. Ring the dietician., I know you said they are on holiday but ask to speak to anyone in the office and ask for then to look at your sons notes and see if his fluid levels are ok. If you need to stamp your feet, I am good at that but it works!

2old2beamum Sun 10-Jun-12 21:00:31

sneezecakesmama you are right I'm just a mum like you and losing my babies was heartbreaking I will never get over it, there will be no more
Thanks for your kind words now shutup.
Itisme sorry about LO's urine infection but am so glad you are getting it sorted out but what a palava. Re flushes would he tolerate 30mls before and after each feed or even 40 but would be inclined to start slowly. Or would he tolerate a bolus between feeds it may be a case of sucking it and see, fingers Xed he isn't sick
Hugs to you all. Hope you and yours sleep well.
thanks for your friendship

2old2beamum Sun 10-Jun-12 21:08:54

sneezecake meant to say i hate people saying oh you so blah blah blah
SorryX posted with tooloud she is right if he can't tolerate it x

Isitme1 Sun 10-Jun-12 22:07:34

I will increase slowly by say about 2 mls each time to see what he can tolerate.
He can't do feeds fast or water. Could I use a giving set? Say if I put like 5 oz in and hook him up for 1/2 a few times a day?
X
Your amazing
:P

Tooloudhere Sun 10-Jun-12 22:23:52

Isitme, if you have a gap between feeds (I don't know if you bolus or continous) see if you can get an extra water bolus in or just sneak up the amounts gradually. Trust your instinct as to what will work, you are his mum and know him best.

2old I will cut the sloppy admiration for you, no offence intended.

Night everyone, here's for a quiet one with not too many pump alarms and defineately no bed feeding.

Isitme1 Sun 10-Jun-12 23:00:10

I'll drink to that!
brew

He has gaps yep. We do 4 1 hour pumps a day
X
Night
Hope it's a calm, restful night tonight for all
X

starfishmummy Mon 11-Jun-12 08:14:50

Isitme - my ds has a history of kidney/bladder stones so we have to make sure he has a lot of water. Hes now 13 and drinks it, luckily; I'm trying to remember how much he had when he was small. It was a very high amount - but his paediatrician consulted with a kidney specialist and they worked out what he needed.

We gave it to him as large flushes with his feeds and medication - so he has (still) a 50ml flush before and after his two tube feeds a day; and 50ml in total with his meds, also twice a day. In addition I was giving him extra water through his giving set - probably twice or three times a day before he started school, in between his formula tube feeds. When he started school we cut out most of the water "feeds" and with permission from his medical team we added the water to his formula.

Isitme1 Mon 11-Jun-12 08:28:25

Thank you starfish
It's so painful having uti's and kidney probs.
I was in hospital atleast 1 a month due to kidney probs. I used to call it my second home lol.
He's just about completely refusing food.
He will put crumbs under his dummy and if he does put food in his mouth he chews and spits out.
I was thinking last night, ds has had peg in 2 months and in the 2 months he's been on antibiotics 6 times.
For peg site infections, tonsillitis and uti.
He used to suffer very badly with his chest and recurrent chest infections but since he's had the peg he's not had1 infection! So to me that means he might of been aspirating?

Good morning to all brew
x
Hope we all had A good night x

rosielum Mon 11-Jun-12 09:05:25

isitme, my dd is nearly 3 and she gets 3x bolus of 120mls water a day and 60mls of flushes with food/med and she gets 3 feeds of about 200mls that works out to about 1000cals. sounds like a swallow study maybe useful too? hope to catch up on everyones posts later x

Isitme1 Mon 11-Jun-12 09:41:59

Thanks for the info.
They tries doing swallow study( video fluoroscopy)
But he wouldnt eat no food with the barium on.
He's had the barium swallow as a baby- confirmed reflux.
3 months ago he had ph probe done and that showed even with his meds he's still refluxing atleast half of the day.
Seeing his gastric team on 21st
X

rosielum Mon 11-Jun-12 10:30:04

yeah i didn't both taking my dd for swallow study as i knew there was no way on earth she'd eat/drink any barium! not too long to wait till the 21st at least x

Isitme1 Mon 11-Jun-12 10:35:29

Yup.
I'm going to ring through to salt and see if they have any more suggestions for me to try.
He's as light as a feather and me and his dad are both good sizes ( well his dad is built but I'm just fat. Even as a child I was lol)
X

2old2beamum Mon 11-Jun-12 10:48:28

Itisme with DS they did not bother with a video fluoroscopy he just refused to eat. Mind you I think they wished they had as they would have discovered his stomach was in his chest cavity shock Surgeon and I now are able to laugh about it.
Hope everyone is OK me big tidy up as back to school

gallivantsaregood Mon 11-Jun-12 11:23:31

Hi Everyone!!

We are in the rebel gang too smile DS has been tube fed since birth. NG for 5 years (pulled it out only twice in that time!) then peg then button. He is now 7yrs old. He has a very complicated anatomy and lots of different medical issues but no umbrella diagnosis. If you saw him you probably wouldn't think there was anything wrong at all but he is completely tube fed.

He spent most of his 1st 5 years in hospital and has previously had a really tought time with his health.

Since Nov 2010 he has been having blended food via tube too and it has made a huge difference to him. Prior to BD he was fed continuously over 20 hours per day! Now he has blolus feeds and an overnight pump feed which is real food too smile

He is healthier, his bloods are now 'normal' and were previously all very abnormal. We have stopped 4 medications and he is far more resilient than ever before smile

I haven't had a chance to read the whole thread yet but just wanted to say to Isitme1 that you said you had thinned down a jar of baby fruit - just for info, you would manage to give the baby fruit without thinning it will plunge very nicely smile

Anyway that's a quick into from me and will be back later to read the rest of the thread smile

rosielum Mon 11-Jun-12 11:47:36

gallivants are you on the blended diet uk facebook group? my dd has been on blended diet for the last 6mths and i can't say enough times the difference it has made to her, she is so healthy and happy (now that her constipation/reflux is resolved). welcome to the group smile

Isitme1 Mon 11-Jun-12 11:53:25

Have a nice tidy up 2old!

Hi and welcome to the club gallivant.
Do have a good read of the thread we have had a good time here
grin
sounds like you've got your hand full.

Thanks for that advice.
I've just bought some chocolate pudding baby jar from local shop as I know he's not putting weight on he just feels so light it's unbelievable.
We are all here when you want to vent or just chat about what ever
X
Hope everyone has a good day.
Ds playing up
Biting everyone I better go and stop him lol
X

Isitme1 Mon 11-Jun-12 11:56:52

Rosie I sent the group request thing but I don't think they've accepted.
I dont really use fb that much. Got No pics up as it's the account dh uses and what not.

gallivantsaregood Mon 11-Jun-12 12:16:03

Hi again,

Yip I am on the FB group too smile

gallivantsaregood Mon 11-Jun-12 12:22:46

isitme1 Do you think your lo has a milk allergy? DS is and is also lactose and soys too. He can't cope with even traces of dairy. His gut shuts down for at least a week!

The allergies can pose a challenge but it is definitely do-able. DS had about 1800kcal per day on BD. Never got past 1100-1200kcal on Neocate and much of that he vomited back up anyway!!

Good luck with the BD it is amazing the difference it makes. Even DS's medical team who were shocked to begin with are blown away with the difference it has made for him.

Biggest challenge for us in doing BD is going on holiday. However I have worked out some easy to do, non blending recipes for lunch and dinner ( DS doesn't tolerate breakfast) using baby jars, protein powder and EVOO.

I really need to watch the fat content for DS as he only a fairly little amount.

DS is likely to be tube fed for his entire life so having real food for him is so important. In fact we are off to Disney next year and because they are so good with allergies etc and do puree food if you need it, he will be able to choose his meals from the menu for the 1st time in his life smile smile I may need t thin it down a little but that's easy done.

gallivantsaregood Mon 11-Jun-12 12:35:49

Ok, I'm on Pg4 now smile

Tooloud. What about using those ceramic ball things for washing the bedclothes??? Seems they are very enviro friendly and not scented at all.

isitme If you Ds is having trouble emptying his stomach ( My DS digests NOTHING, not ever water, without Domperidone) then try and really limit his fat intake. If you google gastroparesis diet you'll get lots of info on foods whicha re easily digestable which helps a lot.

I hope his surgery works. When is he having it?

P.S. You strategy re food sounds like a good one smile

Isitme1 Mon 11-Jun-12 14:28:34

When they did first endoscopy it showed nothing
So he was put on fortini high energy to help him put weight on.
That made him very bloated. After second scope it showed he'd had an allergic gut.
He's always constipated unless he's on neocate.
We went dairy free and he completely stopped eating ( which they didn't want- they are trying to encourage him to eat)
So he was still refluxing, still sick, still crying and not sleeping.
The only change there was to him was his constipation stopped.
He's always now very loose.
They still deciding whether or not he is.
Very confusing.
I've tried him with some chocolate pudding down tube but I'm
Wondering if I should wait until the 21st?
Hmm no it's too far and he's losing weight
X

rosielum Mon 11-Jun-12 14:39:05

isitme, ellas kitchen do breakfast pouches that are reasonably high cal and at least one is dairy free, that was one of the first things i tried pre-blender x

Isitme1 Mon 11-Jun-12 14:49:36

I managed to get a Heinz baby jar.
I think for the full jar it's 70 Cals or so.
He's had round about 1/4 of the jar x

starfishmummy Mon 11-Jun-12 14:51:29

I think it is so hard when our children refuse to eat - feeding them seems such a basic thing, and it makes us feel bad if we can't do it. SALT didn't really help with ds when they were called in - his history was that he was failing to thrive (has complex medical needs) and had tube top ups- but gradually he stopped taking anything orally and became really distressed if I as much as walked in the room with a bottle. The one useful thing SALT did was to give me a locally produced leaflet which outlined that tube fed babies/children could develop a sensory food aversion and that it was nothing the parents had done.

I know it is hard, but if he is getting his needs from his tube, then try to be relaxed about the oral stuff. I would go as far as saying don't even try. Sit him at the table with you when you eat, and have stuff available for him to try if he wants but don't try to encourage him or tempt him, let him make the first move.

2old2beamum Mon 11-Jun-12 14:57:44

Itisme why don't you ring his dietician ours is very proactive and doesn't care a toss about protocol.
I have been thinking (ticktick) has anyone had any experience of pureed food down a jej tube, he survives very nicely on predigested milk (1000-1050 cals/day) fed over 23 hrs-----any thoughts

2old2beamum Mon 11-Jun-12 15:06:49

Agree with starfishmummy. Personally I would stop even encouraging him . Children soon learn that feeding can be very manipulative IYSWIM. Tube feed him until he is ready and meanwhile enjoy him.X

Isitme1 Mon 11-Jun-12 15:19:37

The dietician is on holiday.
I might just do that.
He won't let go of his dummy angry
I wasn't told about the sensory thing.
That's what google is good for lol
X

rosielum Mon 11-Jun-12 15:31:09

2old, i know that people do do it but i think you'd have to be very careful with straining the puree. i think people often start on blended food because their child is not thriving on formula. thats what happened with us and then once i'd started it just felt like totally the right thing and the benefits to my dd were un-ignorable(is that a word??). there is alot of information/support avaliable and a book called 'complete tubefeeding' is excellent too smile

Isitme1 Mon 11-Jun-12 20:33:14

Sorry 2old I don't have a clue
X
How's everyone's day been?
X

Sneezecakesmama Mon 11-Jun-12 21:07:25

2old...sneaky thanks
Rosie thanks...re the using fluids to increase the volume of the stomach. DGSs is the size of a walnut.

Isitme.......not going to offer any advise as you DS sounds incredibly complicated, you have my sympathy only as it sounds a nightmare. Baby food jars are rubbish if you are trying to chunk up a child, no calories to speak of. Designed to avert an obese population!

I can understand little isitmes problem with food. I think he associates eating with pain from the refluxing. DGS associates food with vomiting and will often retch at the sight of it and even at the syringe. Ok though after that first sight and will then eat ok. Once the reflux ends I bet he would be much better. Don blame him tbh must be awful to have reflux.

Blended feeds sound brilliant. We would go down this road if we were feeding via tube only. It's common sense and no wonder little gallivants health improved with fresh cooked food with all the trace nutrients.

DGS used to be a bit constipated but at least it smelled of poo, feed poo smells awful in comparison!

2old2beamum Mon 11-Jun-12 21:17:49

Thanks for replies re jej feeding, am rather nervous of changing things at present as he has a horrendous year--screaming for hours "they" finally came to the conclusion it was neuropathic pain now having Amitriptyline and Propanolol to control pain. Happy for 6-8 weeks now miserable non smiling feel we are back to square one and increase of seizure activity.
DD had a brilliant day at school so not all bad news.
Galli welcome looking forward to your input.
Sorry to moan thanks for listening

2old2beamum Mon 11-Jun-12 21:24:02

thanks Sneezecakesmama can't quite work out your relationship with sneezecake (old age) XX

Isitme1 Mon 11-Jun-12 21:32:47

Yep sneezcakes salt have said Its food aversion in response to a stimuli- the reflux and pain.
He's had a few bites tonight.
Didn't put him in the high chair for tea.
Mum made him a plate up tonight. He's literally had the size of my thumb nail in small chicken bits.
He's crying even more when urinating now.
He woke up screaming and was holding his nappy.
I've got uti and so has he lol.
X

Tooloudhere Mon 11-Jun-12 21:40:56

Evening, we are in hosp ds has yet another chest infection they think he is aspirating the feed from his g tube. It is not like we can run it any slower so who knows where we go from here. We already run continous feeds.

Sorry to hear your ds is still unwell isitme, I hope the antib pick him up soon. 2old I hope your ds gets help for his pain too. Good to hear dd had a good day. Hi to everyone else.

Wishing everyone more sleep than we will get! Its so noisy here, on the bright side his sheets will be no issue here, in hosp he is normally found sleeping on me.

Isitme1 Mon 11-Jun-12 22:09:23

Awww tooloud.
Hope ds gets better soon
brew think you will need it for the long night ahead!
The Internet was the only thing that kept me sane when ds was in hosp lol.
Could you try a thicker feed that's fed slowly or maybe they might suggest jtube? As that sounds like aspiration can't happen? Correct me if I'm wrong 2old. I don't really know too much on that subject.I'm sure 2old will be along soon to help smile
X

gallivantsaregood Mon 11-Jun-12 23:25:11

Isitme and Tooloud- Get well yesterday wishes to everyone!!!

For those thinking that BD would be great if their child was completely tube fed.......what some people do whose children do eat some things, ( I don't as DS is so orally aversive nothing goes in his mouth), is they let their DC eat what they want and the rest of the meal is blitzed and tubed........less waste, more calories smile

gallivantsaregood Mon 11-Jun-12 23:32:59

Tooloud ; Has your DC had a fundo? That could be the next step possibly or JEJ? Hope you're not in hospital for long............our longest was 13 weeks in one go. I only stopped keeping a hospital bag packed a couple of months ago as DS was constantly in. Hope the ward is a friendly one and you have earplugs to help you sleep. ( I use 1 earplug in hospital which lets me sleep but still hear DS). I use 2 at home cos DH snores like crazy......lol

My day's been ok. Just been writing to the head of education telling them their policy of employing 1:1s on temp contracts is rubbish! My son's 1:1 since starting school 2 years ago isn't having her contract renewed simply because of ££. No thought for DS ( who is very medically complex and vulnerable) or the increased risk since the others don't understand his medical stuff as well as she does!!!! So that's a bit frustrating. Won't change their decision but at least I've told them how it will affect him!

On a happy note: DS got his new shiny trike yesterday smile smile, funded by The Masons!! he is so happy and proud of himself that he can make it go. He just doesn't have the strength or balance for an ordinary bike .............so THANK YOU to all the nice men who contirbuted and made him one happy boy.

Sleep well everyone. xx

Isitme1 Tue 12-Jun-12 07:51:50

Morning all.
Hope everyone slept better than I did! ( not ds fault, I was worried..)

Galli that's brilliant that your lo got a trike!
That's one thing I want but haven't bought as there's no room here ( I'm not at my own house yet so i have to 'limit' myself lol.

Tooloud how's ds today?
X

Tooloudhere Tue 12-Jun-12 08:02:41

Morning, not much sleep here up since about 5 which is abit obscene. We have our own room but it was still really noisy. He is not too ill, I am hoping after 24 hours of iv antibiotics they will let us home with normal ones. Everyone is very cautious with him as he falls ill so quickly and badly.

Galli that is good re trike, I have heard of masons and rotary club doing a lot of fundraising for sn children, let's hope for the rain to stop so he can use it!

I think ds consultants are going to be talking about what to do next I think they are thinking fundoplication but we will see.

starfishmummy Tue 12-Jun-12 08:23:20

Hugs, Tooloud.

gallivantsaregood Tue 12-Jun-12 08:36:25

Morning all.....yes we definitely need the rain to stop. DS asked yesterday if the summer holidays were cancelled because it is just raining all the time ...( has ASD and ADHD traits ina ddition to all the other stuff going on)!

Tooloud, hoping you get home tomorrow then and DS perks up really quickly.....remember the earplugs trick, it really does work. Having spent probably approx 3.5 years in hospital in total I wouldn't go in without them smile

Also a bit funny.....This week is health week in school;, so they are doing lots of different taster sessions for different sports etc. He told,' the hospital came to school today' When I enquired further he told me, ' He was talking about dead people. It was a little bit yuk!'. I wasn't best pleased they were talking about death ( as he can get really anxious if he catches on to something) so I kept trying to get a bit more info. After about 20mins of me quizzing him it seems they has someone in doing a CPR demonstration!!! DS did not participate as it was 'yuk'. The only thing he puts in/near his mouth is his toothbrush so no way was he going to blow into th dummy!!!! Made me smile smile

I suppose I should tell you a little about DS : When he was born the prognosis wasn't good. He should have died inutero, but he didn't, he shouldn't have survived a mionth, but he did and is now 7 yrs old. I was told he'd never walk, talk or have any quality of life!! Well he is a happy little chappie, who can talk ( has speech issues though) does walk (uses a wheelchair for distance) and is the happiest , sunniest wee boy I know smile His internal organs are not in the right places ( not a straight left-right swap - more like organ soup!), he had 3 heart defects,He has major arteries missing, extra arteries in his kidneys, some organs are a funny shape, his liver is now in his lower abdomen in front of his bladder, his stoimach is tilted so his food has to go uphill before it can get to his gut, his liver was inside his umbilical cord (exomphalos), cleft palate, and tiny jaw ( pierre robin syndrome), very complex severe talipes (clubfeet). His sats were between 60-80% for the 1st 4 weeks of his life so not sure how much damage has been done. He has multiple allergies food and non -food, gets lots of pain in his feet/joints due to Hypermobility Syndrome and hypotonia and scarring from multiple surgeries..........He spent 13 weeks in hospital before coming home. Was fed into his duodenum for most of his life , continuously 20 hours per day. Spent most of his life in-out of hospital having surgeries, being VERY ill and no-one able to say what the problem was. Cognitibely he does very well. However the older he gets the gap between him and his peerrs gets bigger. He is very innocent and like I mentioned before has very strong ASD and ADHD traits ( have chosen not to assess at this time as we are in scotland so support is given on need not diagnosis and I don't want to medicate him). He has lots of sensory issues and diagnosed with sensory perception disorder. His little body is completely wonky. Even his biochemistry responds oppositely to what it should when he is ill!!

We have no umbrella diagnosis. He probably has an element of CP( due to low oxygen levels when he was born), but neurologist didn't want to put it on paper as he believed people's expectations of him would drop! He has had every genetic test going and still they have found nothing ( Currently part of the DDD study in Cambridge). Geneticists have discussed him at global genetics meeting and told me he is the only person they know of in the world with his combination of issues disabilities!!

But he is happy, loving and kind.......what else would a mummy want smile He is my reason for living and I don't regret a single moment. I would take away his pain but I wouldn't change him. Because of what he has endured he is the person he is today and I love him just the way he is smile

Have a good day everyone and sorry for the epic so early in the morning smile

Isitme1 Tue 12-Jun-12 08:55:31

Hope they do something to help him soon.
Try and cat nap during the day when ds is asleep.
X
{hugs}
Have a brew
X

Isitme1 Tue 12-Jun-12 09:00:45

Awww galli {hugs} to you and your ds.
Bless him.
That's all we mothers ask for is a happy and healthy. We can't seem to get the healthy bit right but I'm 100% sure he's as happy as can be!
How is he coping with his health?
Is he your only child?
just being nosey x

Tooloudhere Tue 12-Jun-12 09:17:04

Galli you really shouldn't write such moving stuff early in the morning when I have ad such little sleep, I blame you fully for making my eyes leak a little! Seriously through he sounds a lovely lad who has been through a lot, I do hope that the sun returns for his summer holiday.

I have tried earplugs before (they even offer them on the ward) but they make me sleep lighter somehow, we too are seasoned hospital visitors. After a few nights I can tune most other stuff out and only wake for ds and his alarms etc.

I am showered, breakfasted, room tidied, beds made, ds is back asleep and I have been able to put him down ( he must be unwell) and I am bored. Internet is painfully slow on phone, now I am whining I know. Perhaps they will let me do some cleaning if I ask!!!

Isitme1 Tue 12-Jun-12 09:58:58

Why don't you rest a bit.
Lol@ the cleaning!
I used to help the cleaner when she came round i would help lol.
We just get bored.

Hope you find something 'entertaining' to do if you don't/ can't sleep.
X

Isitme1 Tue 12-Jun-12 10:14:45

Can anyone give a simple bd recipe please?
I've heard a lot about oils and grains etc but don't have a clue.
Also can I just start with stuff like baby rice? And the powder food meal things?
Just really scared of tube blocking x
Thanks x

gallivantsaregood Tue 12-Jun-12 10:37:53

Sorry for the wet eyes, wasn't intentional, suppose I'm hardened to it now ...lol

Tooloud....well done you for being able to tune out the noise. I have never mastered that one. Do you read? I usually take loads of books to the hospital. The more ill DS is the more I get to read. What about a good dvd on a little dvd player? What hospital are you in, are they parent friendly?

Isitme; Re BD recipes. If you pm me your email I will send you our recipes. They have been checked by dietician weho says we cover all micronutrients. SO if volume/cals too much then I would reduce the amounts accordingly for your LO. DS is dairy and soya free though.

We have a vitamix now, but in the beginning I used a hand blender, never seived and didn't have any blockages.I just didn't use nuts or seeds then. Does you LO have a PEG or a button? With buttons if you do get a block it's easier to take it out unblock it, dunk it in boiling water, allow to coola bit and put it back in smile The only block we have ever had which we couldn't fix was caused by Losec!!

Sneezecakesmama Tue 12-Jun-12 10:48:50

Hope toolouds DS is allowed home and is better soon, hospital is the pits for sleeping - time seems suspended and it's extra bright and loud, very odd. Also little isitme and 2olds DS, it's horrible when kids are ill, as if there's not enough to worry about!

Sneezecake is my grown up (ish) DD and DGS is my grandson. DD chose the silly names! She post sometimes causing major confusion.!

Gall...brilliant re the trike....we were also road testing various trikes under the OT guidance and went for the small momo. (£1800). (I personally liked the quest kitten but the rep showed us the next size up??? Which totally swamped him - age range 4-7 - dgs 3.8???). Anyway looking into funding it would be 2-8 months by the time all the paperwork done. Miracle - found on ebay a never used kitten trike with all the supports, made an offer and got it then and there for £300 (they asked for £250 but I was so overjoyed I gave them an extra £50!) It is in perfect condition and still shiny too. So know how you are feeling - though I hope you don't need to do funny handshakes now! Local charities and charities make me quite teary! He will also be getting a whizzybug in 10-12 weeks. smile

Will look into BD if DGS starts refusing oral foods.

Isitme1 Tue 12-Jun-12 11:03:57

What about stuff like baby rice?
I was just going to start simple.
I remember I used to give ds the cheese and broccoli baby rice meals by heinz. Is that stuff ok?
We have a peg not button.

Wow 1800 that a lot of ££££.
So there's sneezecakes and sneezecakes mama.
I will remember that grin

X

Sneezecakesmama Tue 12-Jun-12 11:23:43

Gallivant your DS sounds amazing, a bit frightening too! It never fails to amaze me what parents of SN children cope with, and mostly in a matter of fact way. My DD is my hero!

Little DGS has a DVD player and it was wall to wall Charlie bear, baby jake, Justin.....so yes to DVD player. iPad is brill too, but not sure about roving Internet?

Wish I knew more about gastrostomies. It's just working for DGS at the moment quite straightforwardly we only need to work on increasing the size of his stomach so he vomits less. I think you can get flaxseed oil as opposed to capsules and it's a bit of a wonder supplement!

2old2beamum Tue 12-Jun-12 11:44:24

Phew what a lot of posts.Tooloud hope things are better this morning and you are home soon. Not meaning to do one upmanship we spent 15 months in one shot in Addenbrookes (thought it would be 10days) ?fortunately he had a severe latex allergy so he had a side room. It was awful I cringe every time I see it on TV
Re jej feeding DS 's quality of life has definitely improved, no more reflux. Other son with jej but had no stomach
Galli how exciting about DS's bike I hope he enjoys it. We have just heard that Ds is getting a Pea Pod chair it looks brilliant.
Sneezecake (which ever one you are) thanks for sorting out your family tree I ?think I understand.
Itisme what size tube have you got (not you!!) Looking at DD's PEG blended food may block tube (she has a 6) DS has a 12 with a 6 threaded through it.
Hope you all have a good day. DD27 has just left for Sandringham for HM's garden party so hope it doesn't rain.

Isitme1 Tue 12-Jun-12 12:26:24

His is a size 12. Still seems tiny lol.
Gave him some more chocolate pudding baby jar and he gagged and was going to be sick. He kept refluxing for ages after but it stayed down.

Hope it doesn't rain. It doesn't look too bad down here ( looked better this morning though!)
X

gallivantsaregood Tue 12-Jun-12 13:45:06

HI again,

Baby rice is fine ( and other baby cereals, but watch out for dairy f it neds avoiding). The one thing about rice though is it can constipate...

Isitme, if i'm reading right then it's a peg your DS has. You do need to be a little less gung ho than with a button as blocking a peg is a bigger problem if you can't unblock it, but it is certainly do-able. You may want to seive your blends if blending from scratch.

I have emailed you our recipes smile I'm afraid they are a bit more scientific than most simply due to DS's allergies and intolerance to fats. I would love to just whizz up what we have smile

Great that you got the Kitten for such a fab price Sneeze, great bargain hunting smile

2old - 15months in hospital..... you deserve an award!!!!

2old2beamum Tue 12-Jun-12 13:52:00

Just as a point of interest how many of your LO's get a continuing health care plan.We have but not sure how it works BTW we have no SW

gallivantsaregood Tue 12-Jun-12 14:01:54

We have no SW and don't know what a continuing health care plan is??? Sorry.

Isitme1 Tue 12-Jun-12 14:04:12

2old can you explain a little more please?
Ds health care plan is: ( very brief and from gastric side)
Get peg- done
Get ds more comfortable with foods- can't see happening
Rule out intolerance- not done too well
Get gastric emptying scan done- don't know when
Operations- if still do-able.

Speech therapist as he's not talking.
He's got hearing test on 25th.
There's strong family history on his dads side if family of deafness. Plus meningitis and delayed speech- hcp want to check again.

Is that what you mean?

Thank you very much.
If I have more q's I will pester you galli grin
x

Isitme1 Tue 12-Jun-12 14:04:41

Ooh yeah nope no sw.
X

gallivantsaregood Tue 12-Jun-12 14:27:04

All pestering acceptable smile

How olds are all your LO's?

My DS is 7yrs old and tube fed since birth (NG/ND for 5 years, button since 2010)

Isitme : Re the gastric emptying scan don't be too hopeful of a great result. My DS doesn't move anything out of his stomach without Domperidone..... We have fed him and 4 hours later get the same amount back !! They did the scan and it was 3 hours for the Barium from stomach to bottom!!! I think Barium irritated his gut enough to get it working.

2old2beamum Tue 12-Jun-12 14:35:00

No how can I put it 'cos I'm not clearconfused They get basically what your LO gets, they get all extra care from school (physio, SALT, teacher of deaf and DS teacher of blind and SENSE. He also gets 1-1 trained in deafblind all this is funded by the LEA also DS gets support from school nursing team
I hope that Ive got it right personally I think they have a good deal.
Now here comes the difficult bit
From what I can gather because of my 2 LO's complex health needs The NHS provides extra funding
1),it took only 3 weeks to get a portable hoist shock
2) It has been decided 1 week ago Jay needs a comfy chair it will be arriving next week
3) And they get very regular good respite care package

2old2beamum Tue 12-Jun-12 14:39:56

continuing (bloody computer)
4)Nurse comes x1 week to put them to bed
I can't understand why
it's not because I'm old is it panic

Isitme1 Tue 12-Jun-12 14:54:40

The worst time of undigested food that we've had was between 10-12 hours after a meal that he'd had.
It was absolutely shocking to see. But after he was sick he fell asleep without any pain.
He's on 3.6mlsx 3 of domperidone.
He was at a stand still for 8 months with his weight.
Couldn't get him past 20lb and he was 8.7lb at birth!
He put on a kg in about 19 days and then dietician thought he was putting it on too quick so she said drop a fees. He couldn't tolerate that amount anyway x

Isitme1 Tue 12-Jun-12 15:05:12

*feed not fees.

Hmm so I can just give 10mls of oil as a 'snack' and that's like 90 cals?
X

Isitme1 Tue 12-Jun-12 15:10:27

Oooo
I think I get you.
Ds Has salt, dietician and I think that's it.
Ive applied for dla for him.
Hv trying to get him in nursery for meals and snack times I think.
She was worried about his bad behaviour but he was very 'fustrated' by everything he has been through and he was venting.

He's 2 in September and im still in the process of getting relevant parties involved to help with his care.

X

starfishmummy Tue 12-Jun-12 15:11:52

Gallivants - "^When he was born the prognosis wasn't good. He should have died inutero, but he didn't, he shouldn't have survived a mionth, but he did and .... I was told he'd never walk, talk or have any quality of life!! Well he is a happy little chappie, who can talk.... does walk (uses a wheelchair for distance) and is the happiest , sunniest wee boy I know^

I have one of these too!! Mines 13!!

starfishmummy Tue 12-Jun-12 15:12:27

oh where did my italics go

rosielum Tue 12-Jun-12 15:53:02

sneezecakemama-giving water half an hr before a feed helps to increase volume tolerance. we've worked up to 120mls water before a 200mls feed. as the water is absorbed rather than digested its all gone by the time the feed comes and preps the digestive system for food.
Tube sizes, my dd had a 12fr put in at 18mths old- a 6fr sounds tiny, i wouldn't fancy putting food down it.
isitme, a few thoughts- i would replace formula volume rather than putting it on top as sounds like your ds already has enough volume atm. it depends how sensitive your lo is to fats and if he already has dge i'd go slow with them until you see how he reacts. i remember making a (non-blendered) blend of oat milk, plum baby four grain cereal, smooth peanut butter, coconut oil and fruit puree that went down the tube no problem. you do need decent syringes though, you probably get medicina? they aren't so good for plunging food. we get baxa now which really do the job. i know i mentioned the blended diet uk facebook group but there's also an open group you can just post questions on called blenderized food for tubies on facebook with lots people with lots of experience who are always there to help and support.
2old pea pod chairs look soo comfy, my dd extends alot so wouldn't suit her but otherwise i'd definitely go for one.
it's been a beautiful day here and i've had my dd's in the park and going on the swings etc with dd1 on my knee- lovely day!grin

Isitme1 Tue 12-Jun-12 16:16:10

Lol starfish that mn for ya.

I think I want a pat on the back grin
I put some pear, olive oil and milk in the blender ( it made juice lol) and I've give him 40mls plus 50mls flush grin
X

Isitme1 Tue 12-Jun-12 16:42:36

Thanks Rosie.
He's not been any different with the pear I gave him ( yet!)
So we'll see what happens.
X

KalSkirata Tue 12-Jun-12 16:51:56

hi. dd has had a tube (mini button) for 4 years. I clean the site with warm water with teatree and lavender oil and we have never had an infection or granulation. Its important the button fits well and doesnt move and rub.
dd eats abit by mouth (very severe cerebral palsy), has ketocal tube feed and before she went ketogenic was on the blenderised diet so she got real food as the sugar filled tube feeds made her vomit.

Isitme1 Tue 12-Jun-12 17:01:39

The uk group have accepted me smile
I've already got the other group saved lol

He's had a few bites of pizza base but not swallowing-
Any ideas?
He just spits all food out :|
X

Isitme1 Tue 12-Jun-12 17:03:07

Hiii kal.
I remember you ( it's fazsaeed)
Hows your lo doing?
How are you? X

KalSkirata Tue 12-Jun-12 17:06:02

Hi Isitme. Sadly she is going downhill with chest infections and her spasticity is worse. It isnt good prognosis.
Least her tube is fine!

Isitme1 Tue 12-Jun-12 17:35:01

Awww. Poor little princess!
How are you??
X

KalSkirata Tue 12-Jun-12 17:42:00

Exhausted. Her sleep in much much worse with hourly wakings despite lots of sleepy meds. And tired of constant battling for equipment and respite. Feel all gloomy right now

gallivantsaregood Tue 12-Jun-12 18:22:21

Isitme : Definitely DON'T give 10ml of oil straight. You need to mix it with a wee pouch or jar of food for emergencies. I would think giving it straight would resuly in a vomit!! If he has delayed gastric emptying you may need to messa round with the amount of fats he has until you get to what I call saturation point. Any more than 11g of fat and any one time and DS pukes it all!!

2old....great you are getting all that support without fighting for it smile Just enjoy smile

Starfishmummy......yay!!!

Regards Flushing - that's bit controversial. Supposed to flush loads. In reality I don't flush with water every time. I tend to use the flush to pour into the food container, swish it around to make sur ewe get all the calories.....never had a problem and buttons last at least 6 months smile

We give Domperidone, 8ml x 4 per day. For bolus feeds he gets it exactly an hour before his meal with 150ml water ( remember he is 7yrs old and about 23kg). We do get up and give him domperidone in the middle of the night at 3am though otherwise he pukes his night feed. This works really well for DS. The gastro told me the effects of the domp are good for 6 hours. So he has meds at 9pm when we put the pump on and then 6 hours later...........

Kal - Hugs xx

Sneezecakesmama Tue 12-Jun-12 18:29:08

Rosie...thanks for that. I was wondering how we go about increasing the volume of food accepted without vomiting. I know the stomach stretches so will start with 10mls as you say and then build it up. He doesn't have trouble digesting etc thank heavens, sounds horrendous to have all the other stuff going on. The oat milk peanut butter etc sounds loaded with calories, which is what we want but we are still finding our feet with it all.

Isitme. There is a mn thread about talk tools and ways to encourage the movements for speech, which your DS is missing out on if he won't chew. If possible get him using straws, even to play with, and using whistles etc. to encourage mouth movements.

Isitme1 Tue 12-Jun-12 18:41:42

Thanks galli. He had 20 mls left of the pear concoction lol. He's done fine! Yay.
Thanks for all the info galli I really do appreciate it.

Kal have a brew it's not nice when lo's are ill. You also have to look after yourself though. Make sure you eat well and are as rested as possible. [hugs to you and fam]

2old the chair sounds fab!!!

Rosie he likes well actually used to like using straws. He would imitate a whistle noise.
He is just chewing and spitting everything!! If he let's anything go near his mouth that is.
He won't even brush or let me brush his teeth.
I totally forgot ringing salt today. I will ring now and leave a message for her.
One step forward Two steps backwards!!
X

2old2beamum Tue 12-Jun-12 18:45:26

Sorry can offer no advice on blended food.
KalSkirata long time no see sorry to hear your DD is so poorly it is so awful not being to help your child. DS has had a rotten year smiles are rare. Send my love to the rest of your gang X I think your package of care is disgraceful where are your DD's rights
Starfishmummy sometimes the medics sadly are right with their predictions but I am so pleased for you and others although I am envious I wouldn't not have him.

Isitme1 Tue 12-Jun-12 20:06:15

No problem 2old galli is a great teacher lol

shock ellas kitchen pears pouch has 29cals in it!!!
Omg how do these children grew with that???
I'm defo getting some of the Heinz broccoli and cauliflower cheese baby rice I think it was 130cals in a portion
X

gallivantsaregood Tue 12-Jun-12 23:04:27

Hugs to all who need them......xxxx

Isitme....we did a therapeutic toothbrushing programme with DS as he wouldn't even tolerate having his face cleaned. He will now brish his teeth ( front of them only, but it's something). The programme did work. Ask you SALT about it. If no help I will try and write it up for you. smile

Isitme1 Tue 12-Jun-12 23:11:16

I've rang salt and left a message ( it was 6.30)
She said to get his fav teddy/ toy involved and try that way.
But nope not working. I will see what they say I don't want to keep you from your lo If all else fails I will beg lol
Thank you very much for your help
X

Isitme1 Tue 12-Jun-12 23:16:25

I was doing research and-
Peaches and bananas
Banana baby brekkie
Mango brekkie
Raisin and prune baby brekkie
Bananas apricot n baby rice
Apple n banana brekkie
All ellas kitchen
All have between 120-135 cals
Hope that helps someone
Oo and the Heinz baby broccoli and cauliflower cheese (in the box) had 130+ per serving too.
X

gallivantsaregood Tue 12-Jun-12 23:35:18

They all sound great smile Pity DS can't have dairy it is very restricitng!

Def metion specifically therapeutic toothbrushing, she/he should have heard of it. Not a prob to write it up if you need it. DS is in bad asleep by 8:30 every evening so plenty time smile

Have a good night everyone. xx

Isitme1 Wed 13-Jun-12 07:49:44

Good morning all.
Hope everyone slept ok.
Tooloud hope you got some sleep!

Thanks galli. If you have a few spare minutes then yes please I would love to get ds to let me (atleast) brush his teeth.

I felt inspired last night thanks
So I simmered some apples, put a teaspoon of olive oil in and some full fat milk and then stuck it all in the blender.
I then sieved it and popped it in the fridge.

This morning i thought right I will mix some yoghurt with it. And he's had nearly a full yoghurt with 2 apples and full fat milk and olive oil!
He's gagged once. So I put the bin near him and he took his dummy out to be sick into the bin but I tried to distract him so I put tinkerbell on lol he's a big girl he loves fairies lol
grin
X

Isitme1 Wed 13-Jun-12 07:49:54

Good morning all.
Hope everyone slept ok.
Tooloud hope you got some sleep!

Thanks galli. If you have a few spare minutes then yes please I would love to get ds to let me (atleast) brush his teeth.

I felt inspired last night thanks
So I simmered some apples, put a teaspoon of olive oil in and some full fat milk and then stuck it all in the blender.
I then sieved it and popped it in the fridge.

This morning i thought right I will mix some yoghurt with it. And he's had nearly a full yoghurt with 2 apples and full fat milk and olive oil!
He's gagged once. So I put the bin near him and he took his dummy out to be sick into the bin but I tried to distract him so I put tinkerbell on lol he's a big girl he loves fairies lol
grin
X

sneezecakesmum Wed 13-Jun-12 13:39:59

Isitme. Did you put this revolting concoction lovely blended food down the peg or into DSs mouth? We are very novice still and quite anxious about blending. Ellas kitchen fruit pouches are what DGS likes and eats happily, typical of him to love calorie poor food! grin

Isitme1 Wed 13-Jun-12 13:47:14

I put it down the peg.
I've just come back from renogram at the hospital.
Well actually I'm lying lol I went to tesco before coming home. I bought a tommee teepe baby food blender (£20) for a little cute baby one and I bought some fruit and veg and the baby rice stuff ( broccoli and cheese, summer berries etc...), yoghurts and some chicken.
Oo and garlic bread ( he ate some yay)
I put half avocado ( never touched one in my life) and some of the broccoli and cauliflower cheese baby rice with a teaspoon of olive oil in to the blender and the consistency was like proper purée food so I added a few drops of water as I went along to get the required runny consistency. I didn't make it too runny as I did t want it to be too much volume.
He's had 50mls of it and has done brill.
I've decreased his neocate by a 20mls. I know it's not a massive difference I just don't want to overload him.

I feel very inspired I could cook all day lol
Thank you once again galli thanks
X

gallivantsaregood Wed 13-Jun-12 14:09:10

Isitme: You are doing fab!!! Just a tip though, it doesn't need to be runny like formula. Thicker will go in, you just have to plunge it a bit smile What end does your DS's PEG have? I can send you a few Baxa catherer tip syringes if that helps. Works much better than medicina ones smile

Isitme1 Wed 13-Jun-12 14:28:39

He has the female luer lock one if that makes sense.
I'm looking into buying some syringes. The delivery company keep sending me wrong tips. Dietician won't sort it out either...

I have bladder tip ones if anyone needs them.
I have loads!

Thanks galli.
I do prefer homemade as more cals.
I only bought 2 ellas kitchen pouches 132 cals each.
10mls of olive oil, half avocado and the some of the Heinz broccoli rice. Right- 90+88+100+= 278 cals. The neocate is 1cal per ml and he has 600mls a day.
I will give him this twice a day plus his milk feeds. Slowly I think I will start to drop his feeds
X
X

Isitme1 Wed 13-Jun-12 14:49:51

A question:
Right stuff like grains and oils and seeds how much do you put in?
Whats fructose and agar? Why is it needed.
What type of glucose do you use? The only type I've seen is powder version.
I don't know what else is needed.
If that makes sense?
Thank you x

Sneezecakesmama Wed 13-Jun-12 16:25:47

Isitme. That sounds really fabulous. Much more nutritious than feeds and the brilliant thing is your DS seemed physically comfortable!

Isitme1 Wed 13-Jun-12 16:28:39

Yup and he tolerated his feed after and went to sleep too!
He's going to have tea now. Then yoghurt and then leftover avocado blend.
He won't eat much if his tea.
X

gallivantsaregood Wed 13-Jun-12 16:31:51

Hi,

Isitme.....HI again. The oils/seeds etc I add are measured out in the recipes I gave you. Without a really powerful blender you may struggle with the nuts and seeds tbh. The amounts I have just 'evolved' in the beginning as I was trying to find my feet with BD. If you are going to go for the idea of just blending what a typical child of his age would have and then maybe adding a little extras then just experiment. I have had to throw out some pretty awful blends in the past. Over time you will just get a feel for what is right.

Glucose I just sometimes add to his fruit juice simply for extra kcals. Other than that the glucose isn't nutritious grin. Agave is a liquid 'sugar' which is low GI and helps to prevent sugar spikes. Fructose (fruit sugar)is another lower GI than normal sugar, but I don't use it much anymore cos I read too much can cause heart problems!

I only use jars/pouches as an emergency ( always have a couple plus EVOO in the car) or when on holiday. Just saves trying to take the Vitamix with us since we already have enough extra baggage with everything else smile If he is getting the balanced nutrition the dieticvians say he is, I figure a week here and there with less than perfect nutrition won't do him any harm smile

Will your DS be keeping his PEG or weill he be getting a button? With the type of end your sonhas on his PEG, I wouldn't worry too much about blocking the tube as any blockage is likely to be in the tip of the syringe smile

KalSkirata Wed 13-Jun-12 16:43:46

I use a vitamix blender. Its blenders anything to liquid. Very powerful. When we did blends I didnt really faff around with nutrition. Just blended whatever a child of that age would be having for tea anyway. So a child portion of what everyone else was having.

Isitme1 Wed 13-Jun-12 17:42:00

I think I'm just going to stick with what an doing don't really know what that is lol
Just fresh stuff with the added umf of oil or something.
I heard you can blend bread shock what about egg?
Oo galli I read your thing for the dietician. Omg its brilliant
X
Kal thanks I think that's like half of the idea plus half of gallis idea
X

gallivantsaregood Wed 13-Jun-12 20:02:59

Egg blends really well.......smile

I would love to just do whatevr we are having and maybe someday. If you can do that then it is certainly the easierst way of doing it.

We are going to see MIckey MOuse next November and I had been reading how great they were at Disney of people have allergies and that they can puree food for people too, so I wrote to them and it seems that when we go next year my DS will be able to choose a meal or 2 from the menu for the 1st time in his (he will then be 8) life smile smile

Hope everyone has a quiet evening.

2loud hope your LO is better today xx

gallivantsaregood Wed 13-Jun-12 20:04:09

Oh and re the email/letter....thanks Itsme. I do write a mean letter. It's one of my strengths ( no that I'm bragging) so if anyone needs any hep with letters etc just give me a shout ( I used to be a children's advocate smile )

Tooloudhere Wed 13-Jun-12 20:12:19

Hi, we are home (for now) I managed to drop my phone in the toilet, it was in my back pocket so I was internetless!

I think we are going to be having a fundoplication done, we are not keen but I think another chest infection will make our minds up.

I have lots of washing to do as Dh didn't do any, and need some sleep. I will read and catch up tomorrow.

madwomanintheattic Wed 13-Jun-12 20:23:58

Hello ladies! Not read the entire thread, but thought I would pop in and say hi.

Dd2 isn't tube fed (was ng fed as a baby and had whole history of feeding problems due to her cp) but we had a truly brilliant feeding SLT from birth, who recommended this website to us. I thought I would share as it has lots of info on it, and not everyone has access to a good feeding SLT.

I wholeheartedly thank our feeding SLT for dd2 now being an oral feeder, but it wasn't easy, and I spent the first two years of her life pretty much in tears every day, so I do understand where you are coming from.

Anyway, I'll be off ski, but have a look at new-vis, the 'feed your mind' links are good. She's a specialist feeding SLT in the US, I think.

Love to all x

Isitme1 Wed 13-Jun-12 23:14:41

Yay happy for you now that your home!
Sack the washing an extra day you get some rest!

And thank you womanintheattic -- don't want to call you mad--
I will check them out and I'm sure everyone else will too.

Quick q for all.
Has anyone's lo experiences very bad same sided leg and arm/ hand foot ache?
Ds keeps getting it x

Isitme1 Wed 13-Jun-12 23:41:25

Ds breakfast is nearly made-
1 pear + 1 apple + 10mls sunflower oil+ 1 piece bread grinx

Isitme1 Thu 14-Jun-12 09:05:49

Morning all.
Hope everyone had a good night.
Tooloud how's your ds now?
Kal how's dd?
2old,sneezecakes (and your mama), starfish, galli and everyone else- are you all good? How are your lo's today?
( I hope I remembered everyone blush)
Ds had his bread,pear and apple mixed with oats and summer berries baby rice. He's tolerated it smile
X
I'm amazed by it.
He's getting more cals, vitamins and goodness x

gallivantsaregood Thu 14-Jun-12 09:39:59

Isitme...that is fantastic?

How is everyone else? We are well. ALready done 3 washings this morning and off to take Ds to Ortho appt at sick kids.

Isitme...is there anything in particular which triggers the pain? Is it muscular or bone/joint do you think?

Ds does get pain , mainly in his left side, but that's his weak side. Usually if he is too active, not active enough ( I think he may have arthritis to some degree) or if he is becoming ill he gets a sore big toe ( like screaming sore! No-one has any idea why!). If you can amybe work out when it happens may give you a better idea of how to prevent it or what to flag up to the docs.

Sneezecakesmama Thu 14-Jun-12 10:24:15

So glad you are back tooloudhere. Hospitals are horrible places and sleep impossible. If you go for the op I hope its not a big one, I know the principle but no idea how they do it. We just hope the PEG is a temp thing but don't know yet.

Thanks madwoman...as usual a mine of information! smile

Isitme. We are all fine. Sneezecake (my big DD) and her DH and DGS are on holiday in Devon and have found some sun and loving the break. If your DS has unexplained pain I would get him checked over. I think he is developing physically in the usual way so it's worth getting this checked.

Sun is peeking through here so maybe I can get in the garden grin

Isitme1 Thu 14-Jun-12 10:30:53

I've not really noticed anything that triggers it. He's got paed appointment in July and I've asked for an earlier appt. His general paed is wonderful. I will let her know that he gets pain and about his uti's.
He still getting temp and still in pain when urinating. I rang docs and they had no appt left for today.
I've caught ds sat in a corner on the floor or on the sofa massaging his arms and legs. He then makes me do it. He did have a bit of a limp and when I took him to drs he said he's walking fine atm so I'm not referring you -- I told him that it only happens when he's in a lot of pain-- Im going to ring through to gp again and ask for telephone appt.

X

Isitme1 Thu 14-Jun-12 16:55:09

He's been pretty bad today
Got him weighed and yay he's put on a bit of weight!
However food he had 3hours ago via tube has come out in his sick.
I think I need to rethink my tactics.
High cal low volume stuff. A fruit with yoghurt and butter I think for tea.
How's everyone's day been
X

Sneezecakesmama Thu 14-Jun-12 17:06:25

Isitme. We used to do the high cal thing with oral feeding. Never got anywhere with volume! We are trying to increase that with the PEG but slowly. So pleased with weight gain, it was a lovely moment for us when DGS reached a more normal weight smile

He went on a boat today and was seasick......makes a change from plain old puking!

Isitme1 Thu 14-Jun-12 18:15:11

Awww bless. Bet he's enjoying himself!

When I went to get ds weighed I had to take all his clothes off and nappy. He wee'd every where and screamed coZ he was weeing. Then he was sick :|
We've come home he's got empty tummy ( proper empty) and he's had a few bites to eat orally ( about 4-6 small bites)
X

2old2beamum Thu 14-Jun-12 19:06:22

How are you all? Blended feeding seems to be going OK I am quite envy. Busy day today DC's annual reviews and DS weghed 27.2K and DD 17.5K so a little bit sad especially for DS 14 in Sept. Ah well.
Itisme surely they should be sorting his urinary problems out, its not fair on the poor little lad.
Tooloud hope you are settled back at home and washing done. Phone down lavvy grin sorry
Hope you all have a good night XX

Isitme1 Thu 14-Jun-12 20:04:40

Aww. Apart from the weight did they do ok?

Gp said we can't just change antibiotics which I agree with but I do think they should of seen ds today.
I had to go up and collect prescription and the receptionist knew the problem and I told her he's weeing and screaming at the same time. She said the same and that I've got to take his urine up in the morning (weather better be good I've got a fair bit if walking to do!)
And if he's still the same ' they will have to sort something out'
Which to me is hospital? Ds keeps losing his energy. His temps aren't through the roof but he's normally always cool so a slight temp is enough to pull him down.when he had meningitis his temp was 38.9.
Ooh god that day was horrible.

He refused morning feed and he felt hot but I thought nothing of it as he was on my chest and I thought it was just shared body heat.
He refused next bottle too and just kept grunting. I thought he was constipated but nope...
That day. Bloody hell
X

gallivantsaregood Thu 14-Jun-12 20:22:06

Sneeze: It's such a great feeling when the puking has a 'normal' reason isn't it!!

Isitme: Poor DS. No wonder he is puking. Trying to get high cal stuff in when he is unwell probably won't work, but will work better if the high cals are carbs instead of fats. Fats seem to be the worst if DS is unwell. Sugars, honey Agave,syrup etc are all high cal but pure carbs.. Poor DS and Grrr at GP for all of it. We are very fortunate ( or not in that he needs it) that we have open access to the children's ward in the hospital. Is your DS ill regular enough or complex enough that you think they may agree to that? We always foubd GP to be absolutely useless with DS.

Tooloud: Hope your phone survived! Glad you are home. Hospitals aren't the best place for sick people to recover I don't think. Hopefully things will really improve now you are home.

2old: smile re blended feeding. sad for your DS. xxx

Isitme1 Thu 14-Jun-12 20:48:39

I'm going to discuss that with the general paed. She will make it happen hopefully
Right so stuff like pasta, bread and rice is better? I did fish fingers and broccoli today smile
also found out breadcrumbs dont blend
X

gallivantsaregood Thu 14-Jun-12 21:14:29

Open access is fantastic.........cuts out the unnecessary examinations and eejits in between and they get seen by docs who know them!

If DS is poorly I tend to stick with chicken, rice, banana, apple, but you'll know (or will find out over time) what's best for your LO when ill. xxx

2old2beamum Thu 14-Jun-12 21:16:54

thanks you lot (how rude) for your support. Off tomorrow for a meeting for children with complex needs and have your comments in mind I promise I'll do my best. Mind you I am so tired I may zzz through the meeting.

Isitme1 Thu 14-Jun-12 21:52:57

Good luck [hugs]
I was going to say have wine but nope we dont want you tipsy on the job lol.
Here have a brew and biscuit instead

I'm sure you'd do well x

2old2beamum Thu 14-Jun-12 22:06:24

Too late 2 wine who cares?
Sleep well smile

starfishmummy Thu 14-Jun-12 22:18:39

Hi all. We saw ds's general medical paed yesterday. He's been anaemic, last time we went we were told to continue the iron for three months and then stop it. That was a month ago, he's been retested and his levels are still fine, ]so no more iron meds!!
next review is in 6 months. In the meantime he is to have an ultrasound of his kidneys as he had kidney/bladder stones (first dx when he was 3, last op to remove bladder ones when he was 6) and they re-scan every couple of years to make sure no more have formed. So a good appointment!

Isitme1 Thu 14-Jun-12 22:33:29

That's brilliant that he's no longer anaemic. One less med to give!
I'm glad everything going good for you and your ds.
Hope everyone has an easy night.

Hope 'the storm of 50 years' doesn't effect us all too much.
X
Night all x

Isitme1 Fri 15-Jun-12 08:57:36

Morning all.
Just a quick one.
Good luck 2old! (we know you'll do brill)
Hope everyone slept well and all lo's are well too
X

Sneezecakesmama Fri 15-Jun-12 10:55:23

2old hope your meeting goes well. Not too good weight wise for your LOs by the sound of it. Tees me off that with all the other issues nothing else is straightforward - teeth, weight, CP, sleep, speech sad but then DGS has reasonable general health, hearing, sight, cognition and he's here! So you have to make the most of the good times and stay positive.

Isitme. Your poor DS as if it's not enough with the reflux and the eating. I guess you have to go with the GP but to get an open invite to a ward would be ideal.

At 6 months DGS had an Hb of 6.2 and looked transparent. That's the only thing that I am angry about that he shoud have been put on iron straight away, as am sure the hundreds of vacant episodes he had for several months were triggered by the anaemia (they said not but stopped when his Hb came up). That was so scary for us and took our attention away from helping him develop physically.

Isitme1 Fri 15-Jun-12 11:41:47

I bet it was scary.
I think it's just being lucky enough to see a doctor whom both cares and had the knowledge that's needed in lo's case.
His general paed was soooo p'd off that the services we needed werent offered to us in the north west best childrens hospital. We are still waiting to be seen by their gastrics- 6months on waiting list, 2 referrals and no reply as of yet.
We go to Sheffield children's hosp to see Europes leading gastric consultant.
Sometimes it takes us 2 hours to get there but it's worth it.

I didn't see gp I just dropped his urine off and told receptionist that ds is still ill. This morning he had his head on the sofa and he was screaming and shaking in pain sad
Gp should ring us soon. Hes Got low grade temp so that's not much to worry about it's the pain and family history that's the worry.

X

Isitme1 Fri 15-Jun-12 20:30:36

Where's everyone gone?
X

Sneezecakesmama Fri 15-Jun-12 20:32:18

iPad 1% battery so off to watch football! Xx

Isitme1 Fri 15-Jun-12 20:48:21

Chat Soon
X

Isitme1 Fri 15-Jun-12 23:03:20

2old how did you get on?
Tooloud how's ds?

Hope everyone ok.
Seems like Its me and mama here,.
X

gallivantsaregood Sat 16-Jun-12 08:59:21

Good Mornong ladies smile. SOme sympathy please for me. I agreed to do a 5k walk for BHF and it's today. And it is absolutely POURING!!!!!. Never mind, it's all in a good cause.

Hope you are all doing something nice today ( and warm smile )

Isitme1 Sat 16-Jun-12 09:19:11

Bhf?
Good luck. I had a very long walk yesterday- 2hours! In the rain but it was worth it.
Galli I need you help please.
We are seeing his gastrics on Thursday and he wanted ds on 'more normal milk' to encourage oral feeding but he's on neocate with a normal diet. Firstly have to tell him about bd and secondly am I actually doing ds any good if it's taking him ages to digest it? I don't want him to turn around and say I'm doing more harm than good.
He's a very 'high/upthere' guy and intimidates ( I've said that word so many times now it doesn't sound right lol)
I forget what to say! I started writing a list for when I see him but to me that just makes me look more young stupid I think he sees me as a young mother who can't cope I've had a lot to cope with I asked if it wad ds bowels Playing up as he's very irregular and he totally dismissed me
He is very good in his field and a nice guy too but I need him to take me seriously. How can that be achieved?
Morning to everyone and
Sorry for the long post
X

2old2beamum Sat 16-Jun-12 11:09:01

Hi all.
2old is feeling her age today but am seeing endocriologist Monday and as all old nurses have self diagnosed tut tut.
Isitme we too had a gostroenterologist who was really up his own arse. When I took DS4 (now sadly dead) to see him about his diarrhoea he looked very very bored disbelieving and disinterested. I looked down on the floor under Stef's wheelchair was a rapidly expanding green liquid puddle of poo grin Dr jumped up screeching like a banshee and flapping his arms up and down shouting "get a cleaner get a cleaner". Everyone else was in hysterics 1hr later our relationship was on a different level. Any way you could arrange this
Galli good luck with the run we have a shop with a BHF tin so will chuck a few sheckels in for you.
Meeting went OK our NHS trust is trying to set up health passports for children with complex health needs but bloody confidentiality gets in the way.
Does anyone elses trust use them? DS's all seem OK at present. DD2 went to Sandringham on Tuesday too meet HM. Is now watching Trouping of the Colour Grr.
Might take a stroll along the promenvy <hugs to all>

Sneezecakesmama Sat 16-Jun-12 11:15:14

Think ? British heart foundation, maybe?

Good luck gallivants hope it stops raining, but looks very cloudy everywhere.

Isitme. It's horrible going to appointments and not being listened too. DD refused for ages to go to the MDT meetings as it was all doom and gloom despite all the efforts we were making. Makes you feel like a failure if you can't feed your child. Take a list and explain about the blended food. Also about DSs slow bowels and try to explain your concerns. I think BD is the right thing to establish normal feeding, having pre digested feeds may be encourages the bowel to be slow, after all the body is not designed for these feeds so is not behaving normally?

Dd and her DH back from holiday today, so I won't have much time to play around on the Internet any more. Back to the physio plan on Monday. Don't mind, enjoy seeing DGS improve, even if it is slow. Will keep an eye on here as have learned some good tips smile

Isitme1 Sat 16-Jun-12 11:50:01

Ooooohhh bhf I get it smile

Ds is either really constipated or is very loose.
I've actually forgot what normal looks like now lol.

His gastric took us serious at first but after our time in hospital a nurse kept pushing for me to feed him her way and I was doing it my way and the way salt said- tv fir distraction and small pieces in front of him. The silly bitch person said put the full plate in front of him and turn the tv off. As you can guess he stopped eating.
Grrrrr she the put in his notes that I WAS NOT FEEDING HIM! So from there that cow has destroyed all the work I did.
I put a complain in against her grin and on our next visit she didn't interfere.

Hope you feel better younger soon 2old.
I'm knackered at my age so your doing brilliantly!
I do admire you lots so smile please

S.mama enjoy having dgs around again! And don't forget to come and say hi and let us know how he's doing
X

Galli hope the run went well. It's windy here but not much rain
X
Tooloud hows ds?
X

2old2beamum Sat 16-Jun-12 14:00:32

Thanks Isitme sure I will be on top form soon.Just need my useless parathyroid gland sorted out====no not useless I am sure thet have ADHD

2old2beamum Sat 16-Jun-12 14:01:09

Sorry warped humour

Isitme1 Sat 16-Jun-12 16:11:57

Well either way hope you feel better soon
blush don't get the joke lol
Atm very p'd off.
Family keep putting ds down.
My eye sight Is very weak. I had glasses from when I was younger but only because I like them lol.

? For those On dla- I'm not driving and as far as I'm aware they pay for a car? And I pay for driving lessons?
I can't do 2 hours in the rain again.
I had no cash on me for taxi
X

Sneezecakesmama Sat 16-Jun-12 16:21:49

DGS gets DLA and MOBILITY at the high rate. They did get a car when he turned 3 instead of the money. I would apply for DLA if you are not getting it because the PEG feeding is certainly not the norm. Not sure about the mobility side, as this relates to walking and I think from the age of 3?

Been to see DD and family just got back and had a lovely week only 1 day of rain. Lovely for them all to have a week of doing just family stuff. Batteries recharged I hope. Mine are grin

2old2beamum Sat 16-Jun-12 16:45:51

Isitme re attempt at poor joke parathyroids do their own thing have melt downs-----oh I give up grin
As you don't drive even if you don't get High mobility The Roundtrees Trust will help fund driving lessons unless you are stonking rich. I don't think they have changed their criteria.

Isitme1 Sat 16-Jun-12 19:17:44

Stinking rich? Lol
I'm a single mother living with parents. Dh still not here sad
Not exactly the high life.

I will google that thank you very much.
X

Isitme1 Sat 16-Jun-12 22:41:26

Well thought I'd let everyone know what he's been having via tube:
Breakfast- oat and apple cereal (baby powder type)
Dinner- lamb and potato (from homemade curry) with bread and butter.

Tea- I've decided that he will get a 'light tea' so he had yoghurt via tube. I've decided on light as he gets tummy ache at night with food still in his tummy.

Tomorrows breakfast:
Fresh strawberrys and apples with milk (and either bread if baby cereal )
X
Galli how was today?
X

Sneezecakesmama Sun 17-Jun-12 10:53:53

Isitme ....you seem to be getting the hang of BD feeding! Well done, sounds a much better idea than milk feeds. Is it possible that DSs problem with slow moving bowels is due to his system never being properly working with lots of liqiid feeds.? Not sure if the bowel needs normal food to go through it to learn how to properly process food, just a thought as if so his bowel will eventually move more normally with your BD. always hope for the future x

Isitme1 Sun 17-Jun-12 13:05:23

smile
Yup I'm getting there.
He's always had probs with bowels. Even on normal feeds and food (before reflux became sooo bad) there was about 2 months of very good eating.

Poor little man keeps rubbing his side sad taking him to the hospital in a bit as he's not really responding to the antibiotics.

Hope everyone+lo's are all good
X

gallivantsaregood Sun 17-Jun-12 20:41:10

Isitme: How did it go at the hospital. Hope you're home and DS is ok.

Well the walk yesterday was halved due to poor turnout ( wimps) and the weather......went well DS walkd a lot of the way and just got inot pushchair for wee rests every so often. Usually uses a wheelchair but decided pushchair was better in the weather.

Re DLA, DS gets high rate for Care and for mobility. If your LO is tube fed, overnight then you should be entitled to high rate care ( if you word your form right). As for mobility he needs ot to be able to walk at all to get it at 3yrs. At 5 you can get it if mobility is limited. DS had really bad club feet, hypotonia and hypermobility syndrome which is why he gets it. We opted for the car instead of the ££ and it is fantastic.

Have you heard of the Family Fund?They are great, recently funded a laptop for my DS to use in school. Thet can fund washing machines, holidays, special toys for kids, bedding because of spoiling due to feed leaking etc. I know they sometimes fund driving lessons too. Worth checking out.

Hope everyone else has had a good weekend. smile

Isitme1 Sun 17-Jun-12 23:26:49

Just got home about an hour ago
They took blood and urine.
Both are fine so we are baffled to why he is like this.
I mentioned my kidney reflux as a child which has led to me getting recurrent kidney infections. So they want to see him on Friday to discuss this further maybe start tests like ultra sounds and what not.

God I'm knackered.
Ds isn't tolerating pump feed for this feed (night one) he's very uncomfortable so I've stopped it. The only food he's had is this mornings yummy breakfast and a bit of quaver and a few nibbles of my pizza. Better than nothing I suppose.
They have punctured ds 8 times for blood! But I knew it was needed so had to grin and bear it really.
He's Been such a good boy for me smile
X

Isitme1 Sun 17-Jun-12 23:27:13

Hope everyone had a good weekend
Good night all
X

Isitme1 Mon 18-Jun-12 10:13:41

Morning all.
I'm thinking about asking family fund to maybe help us out to go Disney land?
I told dm and she said that it's disgusting that I even thought of it because it's just for terminally ill kids.
X

gallivantsaregood Mon 18-Jun-12 13:18:06

Hi Isitme.......poor Ds. I hope the tests get to the bottom of the problem and theyt can sort it out asap. Is he feeling any better today?

Re family fund, they will probably give you Thomas Cook vouchers which you can put towards a hoiliday, either here or abroad. Can be used for Haven too. They don't fund Florida!! Make a Wish Foundation (http://www.make-a-wish.org.uk/fundraising/donate/?gclid=CMPThIfi17ACFY5pfAodECGczg) are the ones who usually take kids to Disney. Dreams Come True Charity (http://www.dctc.org.uk/) may fund to Disney Paris but not sure........worth checking them all out. You can apply to the Family fund each year ( check out their website http://www.familyfund.org.uk/) for various things. it is means tested though and amount of acceptable income is different depending on where you live.

Good luck

Isitme1 Mon 18-Jun-12 14:12:20

My only income is what I get in benefits.
I don't work ( because no one at home who can will look after ds and atm I'm not well either with kidney probs)

I get no support of family. My main paying out is buying food that he might eat and transport fees, nappies, wipes, clothes and then if I need anything.
So end of day nothing left god help me when I have bills to pay lol

Are there any awareness ribbons/ bracelets for tubies?
X

gallivantsaregood Mon 18-Jun-12 14:39:22
Isitme1 Mon 18-Jun-12 20:20:30

Thanks.

I've got a bit of a ?
(to me) when ever ds has milk in his diet he is constipated.
In the last few days hes had a lot more milk down his tube ( yoghurts and mixed with food) he's opened bowels after 3 days.
I've just gave him bog standard fruit down tube today.
He's Been in pain.

Also on his vest where his peg is it's collected discharge. He is on antibiotics. Can I send you the pic via email and will you let me know what you think.

2old how are you feeling now?
Tooloud is ds better? What about your Internet?
Everyone ok?
X

Isitme1 Mon 18-Jun-12 20:22:29

Thanks.

I've got a bit of a ?
(to me) when ever ds has milk in his diet he is constipated.
In the last few days hes had a lot more milk down his tube ( yoghurts and mixed with food) he's opened bowels after 3 days.
I've just gave him bog standard fruit down tube today.
He's Been in pain.

Also on his vest where his peg is it's collected discharge. He is on antibiotics. Can I send you the pic via email and will you let me know what you think.

2old how are you feeling now?
Tooloud is ds better? What about your Internet?
Everyone ok?
X

gallivantsaregood Mon 18-Jun-12 21:10:36

Isitme - please feel free to send the pic.

Do you know where in his tummy the pain is? Is it higher up in his tummy or lower down, or just at his peg site? Am thinking maybe wind. if he is intolerant to dairy that can cause a lot of trapped wind ( not sure about constipation but will check) and maybe the fibre in the fruit causing wind.

If new antibiotics that could be working up to a runny tummy, which can sometimes be painful......

if higher up in his tummy then maybe fruit is too acidic. With DS if his bowels are a bit slow, a 'drink' of pure orange and he goes within a few hours.

Poor wee sould is really going through it just now.

2old2beamum Mon 18-Jun-12 21:19:49

Sorry can't join in discussion but read your posts with interest. DS I don't
think it will ever happensad but with DD who knows?
Good luck to you and all your tubies. xx

Isitme1 Mon 18-Jun-12 22:28:36

His pain has been on his side bit he has rubbed his peg site today too (gently).
I will email you the pic now.
He had pear today to help with constipation but it seems like there's still loads to come. Hes normally fine with a.bs so that's why I was guessing kidney pain?
The discharge on his vest is quite odd. It's a yuk colour with bits of red and like brown colour?
He sees his gastric on thurs and I will take pic along ( photo evidence helps a lot) and If Its same in the morning I will ring community nurses.
2 old how are you feeling?
How are the lo's?
X

gallivantsaregood Mon 18-Jun-12 22:42:25

Itsme : Got your pic. How does his stoma site look? Is it red/gunky?

That could be pus/blood, but could also be food leaking..........Does it smell....sorry, super gross but sometimes it helps.

If his site isn't looking great and this continues I'd want it checked and swabbed. If he is still crying and his temp is still up then could be a stoma infection. If you think it's that then I would probably phone NHS 24. If it is an infection, really needs the right antibiotics asap to be safe. What antibiotics is he on just now?

Isitme1 Tue 19-Jun-12 12:22:40

Hi everyone
Ds has temp of 37.5 ( it was 37.3 when he needed strong antibiotics for peg infection) I've rang community nurses they coming over. If they think he needs to be seen then I will make sure they speak to gp so we have no waiting. He's fine in every other way, he's playing and what not.
Peg site looked fine today confused
So will have to wait and see really
X

Isitme1 Tue 19-Jun-12 19:19:04

They are absolutely useless!
They came out swabbed and said here take it to your gp in the morning.
:|
Around the stoma there's skin on the bottom side which is White in colour and very hard. It's not granulation.
We will be seeing the gastrics on thurs so will let them know.
They were stuck up biatches pardon my French

Hope everyone is ok
It's rather quite round here these days
X

gallivantsaregood Tue 19-Jun-12 20:37:09

Hiya!! Sorry I was on a training course today and again tomorrow and I have a meeting on Thursday so prob won't be around much.

CCN sounds hopeless!! Maybe we are just lucky but ours will come at the drop of a hat, will take swabs, urine specimiens whatever straight to the hospital lab for us.....

Hope DS is ok. Can I be cheeky and ask what condition he has? I know you said his immune system is compromised. ( Please don't feel you need to answer - I'm just nosey and fascinated with everything medical since having DS, my own medical miracle)

Hugs xxx

Isitme1 Tue 19-Jun-12 23:05:08

She was very much up her own arse.

Ds:
-failure to thrive due to:
• severe reflux
• possible cmpi
• food aversion

Also:
-consitpation most of time very irregular
- slow gastric emptying
- immune system is very much down due to meningitis

He's being tested for
Kidney problems
Slow gastric emptying (already know)
Hearing problems
I think he may have a few mental problems due to everything he's been through. He's a very active child ( mother thinks hyper activity and ADHD)
Delayed speech.

Your lo?
X

Isitme1 Tue 19-Jun-12 23:07:43

If he's over stimulated he criesscreams
He hates new places and new people
He's fine in his comfort zone he's not one to get out there
X
He drew all over his White shoes today :| the pen lights up and it's got pooh bear in it!
X

Isitme1 Wed 20-Jun-12 16:30:40

Any one there??
Hope everything went good galli

2old are you ok??

I rang cmn and I said I was appalled at the fact I was left to take swabs upto gp.
They said it's policy confused

He keeps pulling at his peg.
I'm
Going to make sure his gastrics have a good look tomorrow!
X

starfishmummy Thu 21-Jun-12 07:57:24

Hope it goes well today Isitme1.

Your Community nurses don't sound very supportive at all.

2old2beamum Thu 21-Jun-12 18:35:40

2old is back after spending 3 nights in hospital 1 in HDU with DS5 with seizures (bloody meningitis) Now home both were due in respite DD went as arranged and are paed felt there was no reason why DS shouldn't join her So feeling very guilty I have let him go as I am Knackered.
How are you all, have not read recent posts but will do so later and stick my twopenneth in if I have anything worth saying!!
Isitme you are really going through the mill as I have said before meningitis is bloody evil. What type did your DS have
Love to all XXX

Isitme1 Thu 21-Jun-12 19:54:59

Ds had the meningitis with septecmia.
They don't want to do fundo yet as he's not strong enough.
According to last week he's lost about 400g but the consultant wasnt too bothered.
He thinks that the reflux will stop when he puts on weight.
But how can he put on weight if on peg feeds he's not thriving and bd is making him constipated and he is sick and he know food=pain.
He doesn't swallow much food so he isn't going to grow much.
He did say I was keeping his site well looked aftered smile

Yay
I did something right lol
How's ds doing now 2old? Make sure you do rest up proper!
X

2old2beamum Thu 21-Jun-12 22:04:32

Thanks Isitsme DS had pneumococcal meningitis and was found virtually dead by GF and also found birth mother off this planet having taken heroine and cocaine. I am beside myself with anger.Have never written this before, he is so beautiful and although nearly 14 still looks 9-10 he has an air of innocence
about him.
Enough enough of self pity I have a lot to do but have a w/e to recover. Mind you next problem is to sort out DD's fanny blush.
Love to you allxx

Isitme1 Thu 21-Jun-12 22:53:24

Aww bless. It's horrible when there's been suffering that we can't do much about.
My gran was a foster carer and she had a lot of kids with horrible past- sexually abused by family, birth mother drug addict during pregnancy etc.
cuddle from me

Have a nice time sorting dd out :P

I feel a rant coming on.
I was so optimistic about today's appointment and all he said was the ball is out of our court it's up to feeding therapists to get him to eat.
I said he is biting and spitting food. Not swallowing. I then reminded him that he said he would do the following:
- gastric emptying scan
- fundo ( atleast talk with surgeons)
And he said he doesn't need a gastric emptying scan ( yh because bring food up that's been there for over 10hours in normal hmm )
and with the fundo ds needs to be a bit stronger and he doesn't think he needs it!
Ds refluxes so many times a day it's unreal.
He may only be sick a few times a week but silent reflux damages the food pipe so it's more dangerous!
Wtf. I'm
In a horrible mood for ds. Im starting ds on milk free tomorrow. It's not fair he has to suffer. He's sooo constipated! I was giving a lot of milky products down peg so I'm sure it's that!
My poor baby has got to bloody suffer more.
He needs either fundo or jpeg (in my opinion)

Can someone tell me if slow gastric emptying means no fundo so therefor jpeg?
I'm just so agitated for ds.
I know it's having an effect in him mentally.
Apart from his gastric, immunology prob and being unsociable he's just a little boy. He doesn't want this pain and I just feel helpless.
I'm going to email dietician this:

I am writing you this email to let you know that in my opinion ds is not thriving on the neocate advance and he also isn't eating orally.

We said we would try normal food to encourage him to eat. That has failed and he is disgustingly constipated. I will be starting him on a basic blended diet to help with his calorie intake. This will be dairy free. I would like your help to do so. I know the main danger is the tube blocking. I have been doing this for a few days (just basic fruit, veg and chicken) and I use a baby purée blender to make sure that there are no bits in it and then I use a tiny sieve to confirm the bits are out.
So far he's had via tube:
Strawberry
Avocado
Pears
Peaches
Chicken
Broccoli
And I've not had a problem.
I do know that there is a risk of the tube blocking and I'm doing all I can to prevent that.
I can't sit around and do nothing. He isn't eating anything bigger than a crumb, when he was younger feeding time was a challenge. I want this to be a relaxed and healthy way for him.

Thank you

Well what do you think?
X

gallivantsaregood Thu 21-Jun-12 23:41:55

Isitme : Sorry I haven't been on. Course was ok. Trainer was interesting.

Your poor DS. My DS has lots of 'stuff' wrong. Including lots of sensory processing issues similar to your DS. I can confirm that they can get better. He is still sensitive, struggles with new things and endings, but other things have gotten much better. He wouldn't used to do any arty type stuff and couldn't cope with mess of any kind. Now he loves making thngs and will be ok, but not happy, if he gets messy. smile

He has/had:

DORV, ASD, VSD and ductus arteriosis, repaired with open heart surgery at 4 weeks old. Heart is not sitting correctly in his body, it is in right are but turned on it's axis. Recently his heart rate has been VERY low ( , 60bpm) no idea why.

Low oxygen levens for 4 weeks pre heart surgery, so bound to be some damage to his brain.

Extra broncheal tube:

Exomphalos Major : His liver was inside his umbilical cord. Repaired when he was 3 yrs old, but thewn liver moved and his hepatic artery is all curled around on itself and his liver sits in his lower abdomen, in front of his bladder. Very risky as if he falls on something hard ( table edge etc) then he is at risk of severely damaging his liver and bleeding out sad Further surgery to relocate liver when 5 yrs old, on his birthday. Didn't move liver as discovered and internal hernia which was responsible for severe episodes of pain and ileus ( gut not working)

Malrotation of large and small intestine, dysmotility

GERD and loose gullet ( vomits very easily)

Cow's milk protein allergy, lactose intolerance, soya intlerance, lentil allergy, latex allergy, lanolin allergy

Paralytic ileus : Gut stops working completely when he is ill.

Completely tube fed (due to exaggerated gag reflex and weak swallow and oro motor dysfunction.

Pierre Robin Sequence: Cleft palate, small jaw. Cleft repair at 9mth and 6 years old

Complex, severe bilateral Talipes ( Clubfeet): Surgery at 18 months and 5 yrs old. Potentially further surgeries required and potentially amputation in future of left foot as surgery is only successfuly for a short time an dit returns to original positon.

Tibial Torsion : Again potential future surgery to correct this.

Hypotonia all over

Hypermobility syndrome : Causes lots of pain in joints if he does either too much or too little activity. He uses a wheelchair for distance and is a wobbly walker.

Dyspraxia

His imune system has improved drastically over the past year. Prior to this he picked up every single bug that was going both in hospital and out. Had MRSA, well actually VRSA as a baby too so need to be careful with that.....

Sensory Processing Disorder

Recurrent UTI,s and urinary frequency problems ( upt o 17 times a day)

Strong ADHA and ASD traits

Cognitively does well, but struggles with numbers, concepts etc

I think that's it, but I'm sure I've probably missed something.............I carry a complete list around with me in the car, just in case we have to go to hospital in a hurry because I'd never remember it all.

Oh and he wears glasses............

Apart fromt hat he is a fantastic, happy, life loving little boy who was described by someone who worked with him as 'sprinkling fairy dust everywhere he goes'

Now you're sorry you asked aren't you? Sorry.........

gallivantsaregood Thu 21-Jun-12 23:51:14

2old: Hope you are able to relax enough to get a rest and both DS and DD are ok.Exciting time adhead with DD......not I think. xx

Isitme : Try adding some milled flaxseed for constipation. You can buy it in Holland and Barrett and sometimes even in Asda. About 5 g in one feed works for DS ( but he has a weird gut)

My DS has slow gastric emptying and he doesn't have a fundo or a jpeg, so don't panic. I didn't see a real difference in my DS until I completely stopped giving him formula and started giving him'free water' ( water on it's own about and hour before food. Does your DS have any meds to help his slow motility> Domperidone etc? For my DS if we don't give him Domperidone he doesn't even digest water!!

Did you send your email? How was it received?

How is DS's pain today?

Am off to bed. Had planned on going much earlier but here I am........nighty night smile xx

Isitme1 Fri 22-Jun-12 12:54:53

Poor little man.
I didn't understand all of it but the bits I did understand were enough.

blush I sent the full post to the dietician.
Woops.
I did email back an apology lol.
She said that the tube itself won't become blocked but the bit inside will gather sediments and will become blocked over time.
That actually made sense to me.

So I will hold off until Tuesday and see what they say.
Salt coming too.
X

gallivantsaregood Fri 22-Jun-12 13:05:58

isitme: I think she is talking pants! As long as you flush it will be perfectly ok. And if you use warm water that als will flush any fat left sitting in the tube. Omeprazole is more likely to be a blockage problem to be honest....

starfishmummy Fri 22-Jun-12 13:25:37

She said that the tube itself won't become blocked but the bit inside will gather sediments and will become blocked over time.

Well tubes need to be changed for any child. Sorry can't remember if it is the sort that needs to be changed in hospital? But if he gets a button then in our area the protocol is to change it every 3-4 months (which we do ourselves) so as long as your ds's are lasting that sort of thime, I can't see that it would be a problem.

2old2beamum Fri 22-Jun-12 13:29:09

Galli Has your DS got a named syndrome tell me to mind my own business but my medical mind is clunking. Poor little chap but am glad he is so happy.
Isitme, what I can't understand is both our lads were born with no problems, my DS was meeting all milestones at 8 months. Then he had meningitis which completely destroyed his eyes and ears,and severe CP and epilepsy I can understand that. Feeding was always an issue which I put down to his cp. Due to being so underweght and reflux it was decided with no investigations to give him a peg and a fundoplication
He went to theatre to have it done and they found a minute stomach in his chest cavity. Were unable to do a fundo stomach too small so had a jpeg.Feeding has been a doddle since but he is allowed nothing in his stomach and it has to be aspirated 6hrly. Just wondering would the meningitis have caused this and reading about your LO would there have still been problems
with feeding without the meningitis Just a thought.
Hope you are all wellish and have fewer problems today xx

2old2beamum Fri 22-Jun-12 13:39:51

Took so long to do last post missed many of last posts. Totally ag.ree omeprazole is well known to block tubes we use liquid very expensive short shelf life but managable with a good pharmacist

gallivantsaregood Fri 22-Jun-12 17:23:46

"old: A named syndrome....I wish. Nope afraid not. He's had every genetic test there is and is now part of the DDD study. He's been discussed at global genetics meetings and there doesn't seem to be another one of him in the world.

Doctors are either fascinated by him or terrified....... even his blood chemistry does funny things, usually the opposite of what it should and they don't know why. Oh and his pancreas is a funny c shape and wrapped around other bits and bob, has extra arteries in his kidneys and one major artery missing (forgot them fromt he list). Completing forms is a major underetaking.

Isitme1 Fri 22-Jun-12 18:42:05

And he's a happy chappy other wise. Wow it's incredible what kids go through and they still come out smiling!

Ds is on the suspension too. I made sure of that. Gp wasnt happy about it but we had the backing of our local pharmacy. They can get it in next day! Wonderful as this time my stock got low and it wouldn't of lasted til monday! So I would be pulling my hair out without them!

I do know that when I was giving food down peg his tube became lined with food (which concerned me) but if you rubbed the tube together ( which scared me as Im afraid I would damage tube) the crap would come away.
X
Hope everyone plus lo are all good
Galli sorry about the email yesterday I didn't want to disturb you
X

gallivantsaregood Sat 23-Jun-12 11:56:40

Hi, It's no problem. Can't always say I'll reply straight away but do feel fre to email whenever.

I did reply on here though...did you see it? Your email was straight and to the point....smile Did you send it? What respnse did you get?

Hope everyone is well today. DS is at gran's house ( trying to let him go a little bit at a time as usually I am there too.....bit of a control freak I am!!) I am currently skiving from my huge ironing. I HATE ironing with a vengeance, but unfortunately I like everything to be ironed........xxxx

Isitme1 Sat 23-Jun-12 12:11:55

Thank you.
I sent her the full post blush
Including the bit to 2old about my gran fostering lol.

She just said I advise against it due to sediment build up and what not. Shes coming over on Tuesday with salt.
So going to see what they say. He will hopefully be weighed and they will see his weight loss.

I'm just worried everything he is going through will have a lasting effect on him mentally.
He's such a nervy little boy.
X
How's everyone's lo?
X

2old2beamum Sat 23-Jun-12 13:04:18

Galli sad ironing me being a poor OAP pay for mine to be donegrin but do have an 8 bedroomed house to clean (not posh just a tatty old Victorian terrace)
Isitme your email episode ticled me pink!

2old2beamum Sat 23-Jun-12 13:10:18

OOO tickled
hope you are all well.
Well done Galli for letting go it is very hard. Me control freak too.
Isitme meant to say am so glad you have a happy chappy DS sadly gets neuropathic pain and is on heavy medication.
xxx

Isitme1 Sat 23-Jun-12 13:34:47

I meant gallis ds blush
Does anyone's lo go to a sn play group?
I was thinking about taking ds.
X

Isitme1 Sat 23-Jun-12 13:37:22

Let go? Lol I don't know what that means hmm
no one here will take ds for longer than 10mins.
He gets left out. So I'd rather have him by my side.
When his dad is with us it's different. He doesn't leave his side
X
Hope everyone is good x

gallivantsaregood Sat 23-Jun-12 15:44:40

Well Ds is still at mums and I haven't even phoned or txt to see how he is.....how good am I. I did send written instructions though. The fact he is now 7 and mor eunderstandable ( but not always) in his speech helps, cos I know a) he will tend to keep folk right and b) he'll tell me if anything went wrong. Only thing he won't do is remind folk when it's time for fluids/meds/ of food since he doesn't understand what hunger or thirst are!!!
Ironing is finished....ust have to put it al away now. Hubby is doing some plumbing work upstairs so the putting away will needs ot wait and i can have a wee rest.

Hope everyone's Saturday is going well.

2old.....I am jealous. Someday I will have someone to do my ironing. When my in-laws come to stay (they live in Holland), MIL does al my ironing and i'm ashamed to say I don't iron for ages before they come........I save it up for herblush

Isitme1 Sat 23-Jun-12 16:29:28

Get some rest then! Ds is chilling and you need to chill too.

We took ds to the park.
He screamed when we took him out of the pram but I managed to calm him down. Within half hour he was playing himself!
He was on the slide, in the little house thing and jumping in muddy puddles!!!
He didn't want to leave lol.

X

Sneezecakesmama Sat 23-Jun-12 17:07:10

Hope everyone ok. Having day off today, no idea what to do with myself anymore. So used to working 3 days and helping with DGS 4 (physio etc) I'm lost now I've retired and DGS in nursery 2 days. Being busy 7 days a week for 3 years then sudden stop!! No idea what hobbies I used to have - very confused

Sad about 2old and gallis DSs, don't honestly think I would cope with all that stress. Can't stand being in hospital, can't even contemplate bank nursing any more. Have managed to give the boy my odd cold, and he is snotty again, so it's back to the snot induced puking!

Isitme. So nice to hear DS had a happy day out. It's odd that despite all the difficulties these lovely set of boys have they smile and have such happy natures - i'd be a grumpy old cow! grin. Xxxx

gallivantsaregood Sat 23-Jun-12 19:48:37

Sneeze: Hope you had a relaxing day off and didn't fret about what you should/could be doing all day.....

Isitme: Great that you had a happy day smile

Well no disaters with DS at Grans, although she did forget to give him his snack ( He got his meds and lunch so not too bad). He is hope alive and well and happy smile I really miss him when he's not here. People talk to me about respite and having him go to sisters/my mum for overnight but I can't bear the thought. Sending him away overnight is a major operation and actually costs me more energy before with preps and then energy when he's away worrying and usually even more energy when he comes home puking cos he's not had right meds/food etc........Just not worth it for me.

TBH, our life now feels much more relaxed and easier than ever. Up until about a year a go he psent most of his time in hospital, we couldn't plan anything and if we went anywhere usually had to leave early and go home via hospital. In fact a few years ago we were at a New Years Dinner Dance and ended up in Sick Kids at 1:00am on the 1st of Jan. Nothing like starting the year the way you mean to go on eh? And that was exactly the way that year went on!!

People just don't seem to understand thet I love spending time with DS and that I don't need a break from him...... he may well need a break from me right enough...lol. My sister just doesn't get it. He kids are babysat for whole weekends almost every weekend!! I can't understand that, but hey, it wouldn't do it we were all the same.

How about you guys? How are you with letting your children go away overnight etc? Do you feel you need the break? (completely understandable btw, just because it doesn't suit us)

DS hasn't stayed out overnight with anyone, without us, since 2007........today was the longest he's been away without us for a very long time smile

2old, you sound a bit like me. I think that deep inside that I am worried that Ds will die and that I will have missed some of his precious life.....don't consciously think like this but I do think that's behind my control freakness and wanting to spend all my time with him.Well the controllfreakness is mainly to do with keeping him alive and safe and believeing that no-one can do it as well as I can...blush. Poor DS. I do let him take risks and live life to the full btw, just prefer for me to be there when the risks are taken. Not happy for others to take that on.

Anyway this has turned into an epic, sorry. Been in a terrible mood this afternoon and really grumpy with DH for absolutely no reason. Not sure what's going on, but feel better after that we moan/story.

Have a good evening everyone and a happy Sunday. xx

2old2beamum Sat 23-Jun-12 21:49:33

Oh Galli you have summed my feelings up so well. Because he is so vulnerable not able to move deafblind I am so scared he will die when I am not there, He goes to respite with DD so I can recharge my batteries and I feel so guilty I jump every time the phone rings when he is not here. Also some mornings if I can't hear him I dread going in his room. Fortunately he has a brilliant paed and understands my concerns. Apart from paed I have never told anyone my fears. But have to keep smiling for the others and deal with trouble when it arrives. Luckily I am usually upbeat.
[flowers] for listening

2old2beamum Sat 23-Jun-12 21:51:02

Meant thanks silly old fool grin

Isitme1 Sat 23-Jun-12 22:23:17

hugs to the both of you
thanks
I understand where your coming from. Ds isnt as ill as your dc but that is my worry too. If he's with me I know in looking after him and he's safe. He's 2 in sept and he's never spent a night without me. The longest he's been without me is 2-3 hours!

Don't worry about having a good old moan it's healthy!!
X

gallivantsaregood Sun 24-Jun-12 09:10:21

Just like I was saying......DS got up this morning and the first words out fo his mouth, 'I was sick yesterday with Gran'.......did anyone think to tell me , no, so I couldn't give him extra fluid, which I would have done if Ihad known since he missed his (BD) snack too!!...........

We are all completely justified in our feelings.

2old ....hugs to you.

I have shared my fear of DS dying with friends and they are great about it. However when I told my sister that I had essentially planned his funeral ( music, what kind of coffin he would have etc, just in case) she immediately phoned my mum and told her I was having a nervous breakdown!! In fact I had it planned in my head so that if the worst ever does happen, then I can spend his last hours actually with him and not worrying about how to arrange a funeral!!

In general I'd say my family just don't get it. I don't think this is uncommon. They see that he is doing really well just now but don't realise what hard work it takes to keep him well and that he is still in a position of very high risk of a potentially life threatening injury/infection.......I have given up trying to explain to them.

I have one friend who if she hears DS is in hospital just cannot bring herself to phone/txt etc because she is worried he'll be dead!!

Luckily I don't think about his demise on a daily basis and just get on with life and making it a happy life for him smile

Hope you can all have a happy day today smile xxxx

2old2beamum Sun 24-Jun-12 15:27:16

thanks to you all. You are the only people who seem to understand my fears as well as my "bestest" friend who was my DS's now dead "girl friends" mother. Amber died on his birthday how spooky is that? But I am sure apart from you she is the only person who understands my fears. BTW she has another DD who is the same as Amber.
Hope you are all well and will support you all if needed. Unless of course I am 2old grin
Love to all x

Isitme1 Sun 24-Jun-12 18:29:49

I'm very glad I made this thread ohh yhh
I'm happy that we can support each other.
I hope gallis ds is better today

2old your never too old smile
You have words of wisdom and so does galli
And everyone else
X

starfishmummy Sun 24-Jun-12 20:36:39

Istime just read your post about the sediment in the tube and remembered a tip I got from someone at vygon. Flush with a syringe but instead of doing one long slow push on the plunger, do it in a stop start movement which sets up a bit of turbulence (sorry can't think of a better word) which helps can any sediment off.

gallivantsaregood Sun 24-Jun-12 20:39:22

We all have our own wisdoms..... each and every one of us. smile

thanks 2old... for you smile

People talk about the poem Welcome to Holland....have you heard of it? I found it accidentally when I was actually living in Holland.....lol But how true it is. see it here www.our-kids.org/Archives/Holland.html. I cried the 1st time I read it.

Isitme: Hope you DS is feeling much better than he was. How is he doing now? Any more gunk from his peg? What about his uti?

My DS is fine thanks. Puking isn't anything out of the ordinary for him. I just like to know so I can give more fluids.... if he sits in a particular way after he's been fed he pukes, if he lies on the floor ( which is his prefered way of playing) he pukes, if he runs about too much after food he pukes......getting the picture. We buy sick bowls by the 200!!! They are great for arts and crafts smile

How has your weekend been? I was really pleased that the suh came out for a bit today and I managed to plant some wee plants I bought over a month ago and were still in their polystyrene containers blush. Back garden now looks lovely

gallivantsaregood Sun 24-Jun-12 20:42:29

Starfishmummy: That's great advice ! I never thought about that, but when DS had a port-a-cath ( permanent access central line) we had to do this when blocking ( flushing ) it off. smile

See another wisdom.....we should write a wee book. Our little book of special mummy wisdom

Isitme1 Sun 24-Jun-12 21:35:21

Had a horrible evening
Ds looked like he had something in his mouth but I can't quite put my finger on it. I tried to 'take it out' but I don't know if it was plastic ( can't see where that would of come from) or extra growth on his gum on the inside near the cheek. Hes been biting a lot recently and it's making a horrible teeth grinding sound.
He was then sick. Chocked. And stopped breathing.
It was horrible. His eyes became fixed.
He was fine after I let all of his tummy contents.
He his in bed with 2 baby monitors on- baby breathing angel care one and video monitor.
It was horrible.
I'm going to email his consultant now to let them know.
X

gallivantsaregood Sun 24-Jun-12 21:53:39

Oh no. How scary for you. There weren't any foreign ( plastic) objects in his vomit? Poor wee man. Is that the first time he's done the fixing of his eyes thing?

Hope you get a quick answer. Higs and everything crossed for a peaceful, but safe night. xx

2old2beamum Sun 24-Jun-12 21:56:51

Isitme how awful for you I think you coped brilliantly well done. Hope the little chap is ok and you have a reasonable night.
Galli and Star you have reminded me, used to do a pumping action with DS4's Hickman line if it was a bit stiff, unlike stupid Dr who used a 2ml syringe and split the tube!

Isitme1 Sun 24-Jun-12 22:40:52

I couldn't see any foreign objects. If there was anything there it would of come out with his sick. I've emailed the consultant.
If anything else happens will take him to a+e. He's still refluxing but he's trying to sleep through it.
I've put pump on extra slow. He seems settled.

It's not the first time he's done it. It's 4th-5th maybe.
It's horrible when that happend. I just cuddled him and rubbed his chest. It wasnt as long as the first times it's happened.
When I told dm I was almost crying.
Don't think I'll get much sleep tonight. He's got hearing test tomorrow too.
Starfish I don't really understand what you mean...
X

gallivantsaregood Sun 24-Jun-12 22:58:26

Rather than a long smooth push, you push, stop, push, stop but the stops are hardly noticeable.... not sure that;s any lcearer tbh, sorry.

Hope all is well for you now and your DS has a peaceful night. Might be worth propping his bed up a bit higher if you can. May help his reflux a bit. Just folding up a blanket and putting it under the head end of his matress may be enough...

My Ds sleeps amost sitting up. Any lower and he refluxes terribly.

XXX

Isitme1 Sun 24-Jun-12 23:10:01

Thanks galli.
I'm looking into the reflux bed from america. The comfy lift one.
Its $500 I think.
I've sent off for a form to see if I can get some funding into it via family fund.
It actually looks like it may help.
Ds sleeps with me. Propt up on my arm and pillow.

Thanks galli that makes sense
X

gallivantsaregood Sun 24-Jun-12 23:28:38

My DS is in a normal wooden bed and hubby made a thing to go under the matress to raise the head end.

If we are away or anything we just put blankets or pillows under the matress to raise it......

Do you manage to sleep? That sounds all lovely and cosy but can't be very comfy for you all the time. What about community nurses/OT to help with bed.Get a referral to SW OT and they should get you something suitable. xx

starfishmummy Mon 25-Jun-12 08:30:14

How scary for you isitme; and I would second going to a&E or even calling an ambulance if he stops breathing again.

Some good advice from Gallivants about lifting the end of the bed - with ds's cot (which he was still in when he started school as he was so small) we raised the head end by standing it on a load of books!! But I will add that he wasn't able to move much, so no chance of him tipping it over!

With the flush - attach your 60ml syringe and squirt a few mls through his tube, stop for a second (leaving the syringe attached), then start again for a few more mls, then stop and so on until all of the water is gone.

Isitme1 Mon 25-Jun-12 11:12:15

He was fine last night (thankfully)
This morning after he woke up he was a little let's Stare into thin air...
But was fine after that too.
He is on pump on a slow setting.

It isnt all that comfy but if he's comfy then I'm happy.
I've been a bit emotional lately. Dh told me to try and stop ds from having his dummy. I just sat there and cried. Nearly everything causes him pain or hes scared it will cause pain and his dummy is one thing he is confident with.

Long live dummies lol.

How do we get refferal to sw and ot?
I do want all the relevant parties to be involved with his care.

Does anyone's lo go to a sn play group?
X

starfishmummy Mon 25-Jun-12 14:51:05

In our area you can self refer to Occupational Therapy, so you may be able to do that where you are.

My ds didn't go to a sn playgroup as such, but we went to a sn mother and toddler group run by our pre-school educational service. The staff there used to send the mums to the staffroom for a coffee so although we were there if needed, the kids got structured play without us being involved.

You may find that your ccn knows aboiut wht other services are available and can point you in the right direction (also wondering if your ds might benefit from physio as well?)

Isitme1 Mon 25-Jun-12 19:12:35

Ccn?
I'm going to take him to the next play group session I think. To see how he fits in.

How's everyone today x

starfishmummy Mon 25-Jun-12 23:14:06

Ccn - children's community nurse.

Isitme1 Tue 26-Jun-12 10:16:42

I've had enough. On the verge of asking gp to prescribe something to help ds sleep!!!
I'm absolutely knackered! He didnt sleep last night as he was trying to be sick. I let all of his stomach contents out so we didn't have another choking episode.
Salt and dietician on way.
Hearing test was fine. He didn't respond to 2 sounds but met minimum requirements.
Hope everyone Is good
X

Sneezecakesmama Tue 26-Jun-12 17:22:49

Isitme. Just things would settle a bit for you and poor DS. I'm exhausted just hearing about the night problems. You can tackle anything with a good nights sleep. Luckily little DGS is reasonably settled at the moment, snotty of course and DD was snotty and puking (must be catching)! 2old and galli huge bunch of [flowers] for coping so well, even though its hard. And you are right, no one CAN look after your DSs as well as you do, it's a simple fact of life.

We had a bit of a panic as Botox clinic (appointment this afternoon) phoned to say its a see and treat clinic so the boy could have had Botox then and there. Huge relief when the lovely neuro doc said he didn't need it now and reassess in 4 months. (phew!)

Isitme, ask about melatonin for DS. DGS has it and it's brilliant and a natural substance. Your DS is another complicated little boy.

Xxxx

Sneezecakesmama Tue 26-Jun-12 17:23:26

thanks. Must be catching !!

Isitme1 Tue 26-Jun-12 19:43:40

They were very sympathetic.
I'm taking ds gps tomorrow as he keeps getting out of breath ( time for new inhaler maybe?) and his aches and pains.
-- to ask for some knock out sleep meds--
Galli added you on fb hope you don't mind,
Hope everyone is good x

2old2beamum Tue 26-Jun-12 21:49:55

Hi you lovely lot what I would do without you. Have been to a large nature reserve with DS's class (he only had 3 seizures so yay) it was really good older 3 came to help. It was good to meet up again with other mums and dads as well as the children.
Hope you and yours are wellish
Isitme am sorry your LO is breathless glad you are going to sort it out
RE Melatonin found it ok if we didn't use it regularly and gave it late 11 o'clock or late
Sleep well smile

submarine Tue 26-Jun-12 22:28:11

hello, I hope you dont mind me joining. Lovely to see this on here.

My daughter is 3 and has eosinophilic gastrointestinal disease and a few other things. she had an ng on and off for 3 years and just got a gastrostomy last month. we have been struggling a bit as psychologically she is finding it difficult , she has almost developed a phobis of it, making even dressing her, sitting her on the toilet , never mind feeding her almost impossible. She just had to have maxitrol and putting it on involved three of us to pin her down !

Isitme1 Tue 26-Jun-12 23:13:25

Hi sub.
Thats what I was scared of with my ds.
Ds connector on his peg broke so I just sewn it into a small teddy.
He kept lifting all the teddys, dolls and people tops up to see if they were like him. Now he's found one he's not really interested.

Make feeding time happy. Let her know it's helping her.
We call feeding time tickle tickle.
When he first had tube put it he was on bolus feeds and he was scared of feeding time. I knew I had to make him accept it so I got him involved. I would hold Syringe with milk in with one hand and with the other I would tickle the syringe and make silly noises and faces.
He loved it and tickled the syringe himself!
Ds knows it's taken pressure and pain of him having to eat.
Hope that helps
X
2old sounds like you had a good time!
X

Isitme1 Tue 26-Jun-12 23:15:47

Ooo the more you try and force her to accept the tube the more she will 'hate' it.
Put her fav programme on from
The start and start her off with her milk.
Just explain, be loving and caring but not forceful.
Our lo's are the shy bunch and if they feel they need to kick up a fuss because we are, they will!
X

gallivantsaregood Wed 27-Jun-12 07:56:32

Hi, Sorry I didn't get on yesterday. Some stuff to do this am but will check in and catch up later tody. Hope everyone has a good day. x

Isitme1 Wed 27-Jun-12 17:48:03

Hi everyone
Hope your all good
Managed to get ds out of the pram to play in the park today!
X

Isitme1 Thu 28-Jun-12 12:48:06

Just wanted to update you all with ds.
He's been to playgroup for the first time today
And omg he loved it!!!!

He didn't really play with other kids but he still played!
X
Hope your all ok x

sneezecakesmum Thu 28-Jun-12 18:57:13

So pleased your DS enjoyed playgroup, isitme. It must be so lovely to see him happy and relaxed smile

submarine. Hope you can find some good advice here re PEGs. DGS accepted his with no issues, despite our worries. REALLY surprised as I thought toddlers particularly were body conscious and hated even the slightest scrape to the knee, let alone a horrible PEG! PEG Teddy sounds brilliant!

Isitme1 Fri 29-Jun-12 10:16:36

He was just like a 'normal' toddler!

The only thing is he becomes very breathless very easy. Taking him to gp today. He walks across the road and he's out of breath. Which isn't like him. He used to run for 10-20 mins non stop and still be fine.

Hope everyone is all good x

starfishmummy Fri 29-Jun-12 13:01:59

Thats brilliant isitme. It's early days yet, so hopefully he will start to join in and play with the others when he gets used to it.

Isitme1 Fri 29-Jun-12 14:17:43

Hopefully
Hows everyone doing?
X

sneezecakesmum Fri 29-Jun-12 20:40:31

DGS has chicken pox. Only mild so far and he's not bothered. A child with CP with CP grin

gallivantsaregood Fri 29-Jun-12 23:32:32

Yuk ...to the chicken pox. Hope they stay mild and opass quickly. xx

Sub: Hi and welcome. Teddy sonds like a great idea. Also if you try and be quite matter of fact about it, it may help. xx

Isitme: That's fab news about playgroup. Here's hoping he'll just enjot it mor ean dmore and he becomes more comfortable with other kids. DS is rubbish with strangers, particulalry childre. I think it's because they are so unpredictable. If he's thrust into ann environment with lots f strange kids he will either separate himself an dplay alone an dsceam blue murder if anyone invades his space, or he will be deliberately naughty so he will be removed! We now anticipate this and encourage him to remove himself without being naughty, or we step in. He is 7 though so trying to help him to help himself a bit more. xx

2old2beamum Sat 30-Jun-12 22:03:59

Very funny sneezecakesmum hope he is not too itchy.
Isitme so glad your LO is enjoying playgroup but don't forget it is a 2 way thing, the other children benefit too.
Sub welcome, Teddy brilliant idea but a word of warning DD2 had naso gastric tube did likewise with tube on Rabbit, medicines all lined up in syringes phone went wretched child managed to to put all meds down Rabbits tube what a sticky mess.
Having a stressless W/E so far, went to friends birthday lunch (my age) We just had to go on bouncy castle we should know better at our age both fell off showing our knickers to all and sundry both DH's walked off in disgustgrin rest of families highly amused.My birthday tomorrow hoping for zimmer frame grin
Hope you are all well X
Only 2 hosp appts this week 1 for DD4's funny bottom

Isitme1 Sun 01-Jul-12 09:11:43

Happy birthday 2old
thanks + wine from all of us.
Hope you have a wonderful day!

Awww poor lo. Glad he's not got it too bad!
We have chicken pox to come! Not looking forward to it either!

Galli- poor little man I don't blame him for how he behaves, he's been through so much as a child. Not wanting strangers near him would probably be natural now for him.

Hope all is well
X

sneezecakesmum Sun 01-Jul-12 11:48:07

Happy birthday 2old - like me no doubt counting backwards! thanks

I would love to go on a bouncy castle or trampoline but can see broken bones looming. Used to go ice skating weekly a few years ago but now too scared of falling sad. old age def creeping up on me! Not really bothered! DGS spotty but not bothered either, lucky so far.

DGS also scared of strangers most of the time. Knows that sometimes they do nasty things, like pull all his teeth out. Just think it is a sad fact of life for SN children who are pulled around and made miserable in a lot of instances. He was good at the botox clinic last week. Just frowned when they were moving his legs around. Luckily no need yet for botox smile

isitme. hope the nursery play encourages DS to see other children eating and want to do the same. Boring little conformists at this age grin

2old2beamum Sun 01-Jul-12 18:54:56

Sneezecakesmum thanks I was counting backwards until I read a card from friend "ageing is inevitable----maturing is optional".
Hope all is well with you and all your little scumbags grin
Do you think this may be deleted I hope not as it is meant with love.
Chat with you later XX

gallivantsaregood Mon 02-Jul-12 08:27:52

"old: Sorry I missed your birthday yesterday. I wasn't on at all. thanks wine. xx

Hope everyone has a good week. We got a bit of a surprise ( shock ) in the post. Copy of leeter from Cardio to paed and it states that DS may have arotic stenosis!! ( narrowing of the aorta, not good. Will see Cardio end Aug so will know more then. We were told his heart was fixed when he was a baby. It may explain his recent very low heart rate. ( frequently ,60bpm even when up and about)

Off to see my sis and her wee boy today. smile

sneezecakesmum Mon 02-Jul-12 19:58:43

Gallivant. Hope all goes well re cardiac problems. Poor little DS does not need and more heart ops. Or any more ops come to that sad

Isitme1 Mon 02-Jul-12 20:23:09

Awww hope he doesn't need more ops but finds out soon what is wrong.

Dh thinks ds has lost weight.
Hmm I dunno I see ds everyday so can't really comment.
He's 2 In sept and his 9-12 months old clothes fit ( or fall off him).
Got salt and hv tomorrow.
Let's see what they say.
X

2old2beamum Mon 02-Jul-12 21:41:06

Galli sorry about your DS's cardiac problems try not to worry too much (what a stupid thing to say) DD2 and 3 both had heart defects but not aortic stenosis but I believe they can put a stent in to hold the narrowing open (I may be speaking out of my arse as my poor old memory is failing grin)
However I remember a nursing colleague discovered she had this when she was pregnant and had it sorted after delivery and is still fine and is even older than me,
Thanks for birthday wishes
Isitme try not to worry too much about weight as an old fart my thoughts are with my 2 scumbags are doing OK if they have healthy hair,strong nails and good skin, Paed agrees with me not so sure about dietician. Also thanks for starting this thread thanks
Sleep well and good dreams X

Isitme1 Mon 02-Jul-12 22:33:21

It's my pleasure!!!
Well his skin is dry
His hair is thick and coarse
His nails have White little clouds in them. Last time I checked.
No one one seems to be bothered.

Hope everyone sleeps well x

gallivantsaregood Tue 03-Jul-12 09:16:51

Isitme: I find dieticians seem to get their knockers in a twist more than others.........maybe next time they take bloods you could ask them to do a nutritional panel, then you'd know if he is lacking in any vitamins etc which could then be supplemented? Will HV weigh him for you? It could be he has taken a stretch in height and therefore LOOKS thinner?

Thanks folks re cardiac stuff. DS has a very complex heart anyway and this is just something to add to the list. Re surgery we will def have more surgery on his legs/feet at some point and there is also a possibility that his left foot will be amputated at some point. Don't be shocked. It would actually be a good thing. He has really complex clubfeet which just end up returning to original position after surgery. Right food is bad, but better. If they amputate he will get a fully working prosthetic.........and for him that would be great cos he's never had a properly working foot smile So he will have many surgeries I'm afraid.

Come the end of August it will be 1 year since his last surgery. For him that is amazing as he's never gone 12 months with no surgery before. So although there will be many more, they are at least less frequent smile His poor wee body is a jugsaw puzzle of scars...

Hope you get on ok today with HV and SALT today Isitme. xx

The lady from the wheelchair shop is coming at 10am with a variety of chairs for DS to try. He has outgrown his last one and he really needs a lightweight one. His NHS chair is so heavy he can hardly move it himself, which kind of defeats the purpose. xx

Isitme1 Tue 03-Jul-12 12:44:31

Awww hope you get a better wheel chair!

It's good he's been a year without surgery.
My nephew has really bad clubfoot.
He has 2 big toes and 1 middle and 1 small. No side bone. And his big toes are curving in making it hard for shoes. He is in Clarks shoes ATM as they have more room at the front. It's also 2 sizes smaller than his other foot.

Salt said dummy needs to go as ds is vocalising with it in an it's not good.
Hv knew nothing on reflux or peg feeds or fundo.
I and salt told her.
My sil made ds dinner and he ate a few bites in front of them and as soon as they left he screamed and chucked it on the floor!!

X
Hope everyone is good!
X

gallivantsaregood Tue 03-Jul-12 15:08:55

Aw, at least he has manners...lol smile

Sneezecakesmama Tue 03-Jul-12 19:12:04

Gallivants. Image of your dietician getting her knockers in a twist grin. It's unbelievable that kids take all the surgeries in their stride while their parents have nervous breakdowns. It's crap tbh. Have you looked into charities for funding a nice wheelchair? Cerebra at the moment have about a month to get the money so a short waiting time. Whizz kids?

Isitme. Does DS have behavioural issues not related to pain around food? Sounds a bit like some naughty toddler stroppiest going on as in playing mum up over food? DGS will eat for DD (savoury dinner type food) but no chance with me. Today he had wottsits and choc buttons for lunch grin

The peg came into its own over these past days with the chickenpox as he got a bit dehydrated with the temp going on. Loads of fluids down the tube, job done!

Isitme1 Tue 03-Jul-12 23:42:24

Atleast these pegs are useful lol.

I don't overly think it's behaviour as he we were once told that if a child doesn't eat what you make but eats junk then that's behaviour and he'd say no to both.
If he's refluxing or 'playing up' ( about to get pain or fustrated or scared) then he won't eat. Which is round about 2/3 meals.

Obv they saw the floor was being fed too. But the fact that he ain't some made me Proud grin
Hv didn't know what fundo is shock
So salt was pulling faces behind her back lmao being very handy.

Salt talked about speech more than feeding.
She was saying we need to know if he understands single words first etc.
X
Night everyone x