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
Here are some suggested organisations that offer expert advice on special needs.
SN children
Gastrostomy/ tube feeding support group...
Isitme1 · 03/06/2012 12:01
right who is going to start new thread looking at her who started first!!
Hope all is well.
I do not think DD's diarhoea has improved colostomy bag blew off bed full of poo. Thankgoodness she was in respite 
wicked mother.
Grandaughter take notice of your personal midwife try not to worry I am sure your team will be looking after you well.
Think we all intermittently ressurect this thread
Hope 2old your DDs diarrhoea is helped by her recent infusion and settles down. Bloody nightmare.
DD felt tired and v v sick in the early weeks of her pg but it does wear off. She said she is going to find out the sex of this one so if she dies she will at least know 
Tried to jolly her but she said after last time its at the back of her mind. I feel anxious too. Just want it born safely, dont care about the gender. How crap is it that this pg is overshadowed by these thoughts....more
Thought I had better post or else this thread will disappear
Hope you are all well. Things trundle along here with usual ups and downs. The LO's are in respite this w/e 1st time since August so I am chilling.
Oldsneeze glad BD is going well haven't courage to try it with DS as PEJ fed might see about DD but has horrendous diarhea due to immune problems
Grandaughter hope all is well with you, DH and DGGS and your LO xx
Hope all the hospital treks looming go alright for you both...crumbs I would be climbing the walls with it all if it were me Hope little isitme gets sorted, its been nothing but grief with him and this gastrostomy!
BD going well, no puking except when some water went into DGSs lungs and he was gasping for breath...serves him right for being too lazy to swallow 
. I didnt care just shoved a load more down the tube! (my childminding day today) Cant believe the answer to months of puking is just the stomach muscle being too loose to keep the stomach contents where they belong, and feeds just need to be thicker! We are not just going to thicken the formulas the dietician gives us but real food with real fibre, nutrients, vitamins etc
Grandaughter what Galli has said is so right you have to think laterally DD has learnt to drag hers around behind her while bumshufflng. DS sadly is not mobile so 24/hr feeding is not a problem
Hope you are keeping well and sorry DH is being an arse. Is my DGGS still progressing a little foodwise.
Off to hospital tomorrow with DD for IV infusion apart from this things are normal CHAOS
Love to you all and all the Scallywags
Isitme. Tape the connector on/down if you need to so you can use the pump. Had to do this loads over the years depending on tubes DS has had. If this PEG isn't working for you, keeps leaking cos port won't stay closed etc, ring them and tell them you need a different kind.
If he isn't tolerating ( puking/runs) then I'd advise for 24 hours at least, dioralyte on a continuous slow rate. ( how much fluid (including milk) does he usually have in 24 hours? Divide that by 24 to get your pump rate. You should be able to get dioralytre form the chemist for free. Not sure how the system works in England. We have a minor ailments service in the pharmacy where pharmacist can give you certain meds for free, especially for kids.
If he really isn't tolerating feed for days, then take him to your nearest children's hospital A&E ( cuts out all the faffing with GPs or out of hours docs who know nowhere near enough about our kiddies). Go to children's A&E and you may need to wait, but you will need to be seen. If DS would oblige and vomit big time while you are there you'll be ushered away to a cubicle very quickly 
I do hope you can get to the bottom of this soon.Hugs xxx
Can be bought in chemist or big stores with a chemist section. The usual flavour is blackcurrent and it is vile and very few children will drink it! Other flavours are slightly better, such as raspberry. If you can get the dioralyte with rice powder stays down better (anecdotal). The instructions are on the packet and it is over the counter for over 2 yo. Under that age it must be prescribed by a dr. 
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Just watch out for the number of wees/wet nappies little DS has as dry nappies are the best indicator of dehydration. More than 6 hours dry is worrying. Give as much water as he will tolerate (dioralyte is best) its rapidly absorbed through the stomach so is a good starting place. Good luck
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