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

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 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

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

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 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

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!

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.

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

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.

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

Ninky nonk of course you can come and join

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 :)
X

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

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

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.!

X

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.

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

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.

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
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

Thank you for that :)
Feel a lil better now. Hes eating a little bit atm. He's in his high chair and having some food.
Bit by bit :)
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

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?

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 :)

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!
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.

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.

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 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)

Arrow up! That is DD

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!

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

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.

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