Gastrostomy/ tube feeding support group...

[Isitme1]

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

Aww granny. The bitch needs to know what she did.
It probably will be easier when he's at respite.
Im here if you want to chat it out pm if you need a good old rant.

Do make a go of this weekend. We will be getting ready for dh. Then he will be here on Sunday,
Woooop woooop.
I must buy a do not disturb sign for the door lol.

Hope everyone is well
Lots of love to granny and everyone else
X

Thanks Grandaughter .glad you had the stamina to read it all. thanks for the offer to pm you. I probably will let you see my letter. I think tomorrow will be the day.
love to you both from all 7 of us

Hope your day goes nice and smooth granny
Try not to worry too much
X

Isitme. sounds awful having to take antibiotics every day! Suppose you'll get used to it but sounds drastic (though not in the grand scheme of things I guess). DS too...its that time of year and it all goes tits up with back to school/nursery bugs again! DD is getting over it all now and helped by sea bands for the sickness. All in the head of course!

So glad your DH will be here soon. DD does have a DH who is lovely and supportive and even does housework. The pair of them totally devoted to DGS so I hope a new baby will slot in nicely. It will have to bring itself up as no one will have time for it! DD is taking omega 3 and vits so it will be brainy as it'll be teaching itself to read and everything!

2old. The colostomy option sounds the lesser of two evils. to have a recto vaginal fistula must be horrible and will cause endless illnesses, whereas the colostomy is usually well managed once they settle. Bit like the PEG question. Put off forever and a day (we did) but its been totally the right thing to do. Colostomy a bigger op that a peg though Is DD able to fully understand what is going to happen or why. Apologies as not sure of the capabilites of the individual LOs....there are so many of them I would have an overwhelming urge to tell DSs (your DS) so called mother to take a running jump! Maybe sit there and smile sweetly at DS and let the reality of her actions dawn on her slowly. The best lessons are the ones you learn yourself rather than being told them. (My experience of DS who never ever learned lessons unless it was the hard way!!!)

I get up at least every 2 hours in the night for a pee!!!!

Oldsneeze I am not that bad now on peeing front--Have cut down on wine but need 2 trips every night enough about old "ladies" bladders
Re colostomy yes it is the lesser of two evils. ?Sadly she does not have the intellect to understand but I am sure she will appreciate the less intensive cleaning she has to endure 2-3 times a day. Date has been set for 1/10/12.
Madly negotiating respite for DS so far he will be going to one respite home for 2 nights and another for 5 nights poor little sod.
Re DS's BM I feel she should be made aware of what she did and if nothing else it may stop the silly do you like football comments. Thankyou for your constructive advice.
Dearest Grandaughter hope alls well, was unaware DGGS was going on AB's long term. DD2 DS was on AB's for 10 years for her heart
What a long post from a boring old fart. How is your mum (midwife mode) when is DH due home?
As I always sleep well scallywags for your mums
XXXX

Granny I'm going on the a.bs lol not him (thankfully)

Mum is doing well thankfully and dh will be here on Sunday!!!!!
Very excited.
How are you today granny?
G.a.s.
How are you??
I know you've probably thought of it but is dgs on multi vitamins? Theres a child's version that has something in for the immune system. Ds is on neocate so we've been told he doesn't need it (vitamins are complete) and he's not all that ill like he used to be.
(thankfully)

Hope everyone is well and dc
X

Off to see ds's dietitan this morning.
DH and I have been thinking about how to get him to eat more during the day, because at the moment the only meal he reliably eats is his tea. But he is fed continuosly overnight(100 calories) so he doesn't want breakfast and has a bolus of 450 calories around 9.30/10.00 so he doesn't want much at lunchtime.
THe other thing is that although he is eating a resonalble sized tea, he is often taking an hour to do so; I can't see them ketting him take that sort of time with his school lunch.

We can't think of a solution, so are going to throw the ball in her court!

OOps that is 1000 calories overnight, not 100!!

We were offered the over night but as we co sleep it was a no no.
Hmmm
I do agree that because of the timings of feeds it effects the next meal time.
Ds has no breakfast in the morning or sometimes about 5 bites of toast.
Same for dinner and for tea. At most 5 bites on a good day. He gets over excited with noodles and tries to stuff it all in his mouth. Which ends up in him spitting it out.
One of his latest favourite tricks is hiding food in his high chair or down his vest (in a rush I hide his dummy down my bra lol and he's clocked on)

Could you decrease the amount In the morning and give him the remainder at night??
Im sorry that wasn't much help
X

Hi. Yes DGS is on multivitamins pretty much since birth plus omega fish oils from 6 months to help his battered little brain recover! Thankfully the feeds overnight provide vits too.

DGS still co sleeps (despite desperate efforts to shove him into his own bed) and he has overnight feeds isitme. If your DS was fed overnight and not in the day (via PEG) he may get hungry enough to start taking more of an interest in oral feeding? Its an idea to normalise his intake. DGS also a non breakfaster and has alway pre PEG had no interest, very pukey in the morning

starfish. would the school do any PEG feeding? (we are not in that ball park yet as DGS just turned 4) We were hoping he would feed himself by 5 but little chance of that at the moment. He is capable with effort but cant be bothered! How about letting him eat lunch and top up afterwards? Its all so complicated...why wont they EAT!!!

I'm back. No solutions to the encouraging eating thing. Some children have their tube feed after meals which helps but this would mean DS's morning feed moving to after his lunch - which then impacts on his daily activities. At school it is handy for it to be (almost) first thing when they have a lesson where he is sitting down anyway; and if he is at home it is out of the way, leaving the rest of the day for whatever we want to do without having to take feeding stuff out with us.
So she is going to look into some various other feeds, to see if there is one with the same nutrients, but which is more calorie dense so we are holding off until she has done that. One encouraging thing is that she is part of a group of dietitians who are looking into ways and means to get children off tube feeding.

DS came for part of our meeting (one of the advantages of her doing clinics at the special school) and got upset about some of her food suggestions because school drum into them the healthy eating thing, so he is worried about getting fat......

Hi if anyone here is observent you lot will have seen my previous thread DD2's appeal regarding ESA has been accepted.A lovely lady rang me to say she was now in the support group so she does not need to look for work
Respite now sorted for DS and he is able to keep his usual transport it was easier to do an extra 40 miles for transport than to train someone in pump training (DS feeeds 24/hrs a day)
Sorry unable to suport anyones LO's too much mine are in respite
However love to all
Grandaughter bless you glad DH will be with you Sunday and much love to you all especially DGGS XXX
As usual love to all your Scalllywags sleep well XXX OMG my posts are getting very long hopefully coherent

Starfish. Getting fat lol. We used to put double cream in everything per PEG! We would be interested in the getting kids off tube feeding for the future, as DGS swallows fine and can slowly feed himself especially when he grows a few more teeth!

20ld. Glad DD2 now sorted and hope they leave her in peace! Respite seems such an apt name!

Oldsneezecake I expect my newest Grandaughter will too busy to give us a thread .
Hope you are all well. My scumbags still in respite but DD (hospital next Monday) has got horrendous "school snots" which due to strange facial anatomy has now gone to sinusitis so GP visit tomorrow. Would hate op to be postponed as so much effort has been put in place for DS5 for respite (don't think I could do it again)
Love to all scallywags

Hope DD gets over the snottiness. Antibx lesser of the two evils I think. DGS also snotty but nursery snots with him. When is the op scheduled so I can offer up a little prayer for her? The sooner it's all over and settling down after the initial upheaval the better. Just cannot bear hospitals anymore funnily enough! Cannot get over all the organising that needs doing in the SN world! Fingers big x

Bet isitme is having a wonderful time, it a lot of adjusting to do too.

night

Xxx

Hi all
Oldsneeze DD arrived back from Respite and I wisely:???? decided that taking her to GP would be futile as nose was just a bit runny did not look infected so have decided to sit tight, that was yesterday.
Today full of beans nose stil a bit grotty but has 6 days to sort itself out. Visited dentist for any loose teeth no secondary dentition but no loose teeth, So fingers Xed for Monday. DD had 4 seizures this afternoon, life at times not easy so thanks for listening Fortunately I worked at hospital in paeds so it is a "bit" easier
Hope you and your little family are OK XX
Hope my newest DGD is OK

Hope DD stays healthy for the op. Its bad enough waiting for the dreaded day without all the fretting about illnesses and such. I take its the DD with the siezures was a different one from the colostomy one? I get very confused with all the kids Hate the fitting more than anything. DGS so far no repetition of the first year but always on tenderhooks (whatever they are!) He has myoclonic jerks when he's dropping off to sleep or when woken up still tired. They are horrible to see but I know its nothing to worry about. Funnily enough they originate in the same part of the brain that the moro reflex comes from and he still has that bloody annoying retained reflex. (been researching again!) Going to look into toddler massage pre bed to see if that helps but need DD to stop feeling so sicky as I dont (believe it or not) live with them!!!

xxx

Hi Oldsneeze thanks for message.
DD did well at her pre op not a hint of a runny nose. I am somewhat puzzled that we have not been given any bowel prep prior to surgery. Is this now modern practice? Also no guarentee of no" SN bed" on ward (FFS surely they do not have only 1 SN bed on the ward in view of number of SN children in the community)
Re fitting like you I hate sezures more than anything. Both DS's have them.
Unfortunately DS5 has no read his care plan so throws anything he can at unsuspecting carers
How lucky your family are to have you and your old fart. You wouldn't think of moving to the Norfolk Coast I could do with a little Sis
Hope DGS is OK I expect she is busy but I miss her
Take care XX
BTW family is 1(3 home growns all married to lovely peeps
2)DS3 32 Downs,deaf epilepsy
3)DD2 28 Downs multiple heart problems pacemaker asthma
4)DD3 24 Downs heart defect COPD
5)DS4 14 deafblind CP epilepsy
6)DD4 7 Emanuel Syndrome
Numbers do not add up as I have not included our 3 beautiful children who have sadly died
Now you know so no more confusion XXX

Would love to move to Norfolk. My sis and her girls live there and we were on hunny beach a few weeks ago in glorious sunshine, but DD and DS would have to go too. Couldn't leave nearest and dearest behind. Need to win lottery and make my dream possible but no luck at the momen

Bowel prep is given still to adults but no idea re children. You would think so though??? I'd check if I were you.

Thanks for the inventory . You are so like my late friend. She had 3 natural children, lots of fostered, and 2 mixed race adoptees, I downs / severe heart probs adopted and 1 adoptee taken away from his arsonist parents! Her downs girl died aged 26 even though she was not expected to get out of babyhood and DF had a SA and died a couple of days after the funeral. Awful ....so look after your own health as she sadly didn't. Take care and hope DDs good health continues for the op.
Xxx. (Isit will come back soon I'm sure)

Just a short note, thanks for your note.
Sorrt about your poor friend life is not fair. I try hard not to moan about getting old--I think it is a privilege
How is your DD DGS and family?
Well we are ALL packed for tomorrow been a bit of a nightmare Will speak when we get home. BTW no bowel prep checked and they ummed and aahed and said no but may give her an enema,
I think DGD is too busy with her beloved

Keep positive. Many best wishes that all goes well. Nerve wracking all the way with these kids but I think it's for the best in the long run even though horrid now . Poor little DD must be so confusing if they are young or have limited understanding. Feels worse than if you can give an explanation, then again ignorance may be bliss as they can't freak out!

DD, DGS and us family all jogging along OK. DGS happy back at nursery pointing out (new skill) the way to his SN area

Xxxx

So sorry to have come in all chatty and then become silent... things have been odd-ish here. DD and I are finally looking at getting home at the end of this week - it has been quite the road indeed. Since she was transferred out in August, we have only seen DH twice and DS once, and being alone with her far from home has been more difficult than I could have imagined.

However, she is improving. She is scheduled for a new line placement (along with a number of other procedures) Wednesday afternoon, and if that goes well, then she should be discharged Thursday afternoon and we should be getting home at about bedtime. It is hard to think that this will be the first time I have crossed the threshold of my house for the better part of 2 months. I am trying not to think about the crushing debt that the last 2 months have left us with, and just concentrate on being home.

Her 7th birthday is in 3 weeks... last year, she was admitted to hospital the day before her birthday, and had a stroke on her birthday ... this year, I hope it'll be a bit better.

I have been following the boards, and think of you all often - hugs and waves from Canada

Beemom. Poor you and DD sounds really awful to be away from everyone for so long and do hope little DD comes home and has the procedures done successfully tomorrow. heavens, you must be worn to a frazzle. a couple of nights in hospital surroundings is bad enough but so long must be exhausting. 2old is also in the throes of operations with her DD I am just so grateful that DGS, despite a few trips to hospital, has a basically healthy constitution (x)

We all moan about the NHS but at least we dont have to get into debt where disability is concerned. I think ASD children stuggle a bit with SLT etc but there a lots of lovely charities here too for things like trikes, which used to be funded by OT!

Keeping fingers x for your DDs 7th birthday and canada is a lovely civilised place. Except where ice hockey is concerned (DD and I used to be fans in our free and easy days)

Sneeze - we love Norfolk too. Every year we go to the same area (near Cromer) and look at the houses for sale......

I look at houses for sale too!! We own ours so could afford a straight swap, but cant leave the LOs. Norfolk is gorgeous although DSis says the drivers there should all be shot, as in they are awful!