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Gastrostomy/ tube feeding support group...

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

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!

sneezecakesmum Fri 16-Nov-12 11:36:50

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 smile

gallivantsaregood Fri 16-Nov-12 18:58:18

Isitme: Exactly what Sneeze said and hugs xxxx

Isitme1 Sat 17-Nov-12 12:25:01

Thanks. Would like some more info on the diorolyte please. X

sneezecakesmum Sat 17-Nov-12 12:48:54

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. smile

Isitme1 Sat 17-Nov-12 16:52:21

I mean can it go down button? How on pump?
So milk as well as that?

starfishmummy Sat 17-Nov-12 18:52:17

Yes, you can put it down the button and through the pump.
We have done it often.

starfishmummy Sat 17-Nov-12 18:52:20

Yes, you can put it down the button and through the pump.
We have done it often.

2old2beamum Sat 17-Nov-12 18:54:29

Grandaughter I always put via the pump but not with milk as if puking you need to get essential salts ,potassium etc into him. Will post later hungry mouths hanging open!!

Isitme1 Sat 17-Nov-12 20:51:57

Thanks. Cn have been and put different peg in.
Its balloon inside and disc on the outside.
Its horrible the connecter keeps popping out!
Hes got the runs plus sick but not viral its his digestive system messing up.
So no pump as cant keep connecter in with it on?? So we are on the diarolyte.
Hes had 120 mls so far. Will leave him an hour n give more...
During the night I will wake every 3 hours to give it him

gallivantsaregood Mon 19-Nov-12 11:10:48

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 wink

I do hope you can get to the bottom of this soon.Hugs xxx

Isitme1 Mon 19-Nov-12 16:12:09

Hes had 24 hours dioralyte and I have just put his milk on.
Took him to a n e the other day and they did f.a.
The connector is now behaving itself so not too bad.

Isitme1 Mon 19-Nov-12 16:20:02

And he cant be on pump 24 hours as he cant/wont keep the back pack on and theres no way hed sit down all day

He has 700mls neocate plus round about 240mls total flushes.

Hes had very minimal leakage in the past 24 hours so not too bad.

H is being an ass.
Really don't need it as I've got enough on and surely he should understand a pregnant woman with a sick child doesn't.need extra shit of him.
All family nearly know now just elder brothers left and they wont be too happy as they have seen how bad h has been lately.

gallivantsaregood Mon 19-Nov-12 18:53:45

There are ways around the backpack isitme. Luuk has never managed to carrybit bad he was fed continuously for years. Do you gave a bag with wheels on it? Can out it in there. Or if hr gas a toy with Sherman and a space you can put the backpack like a big dumped truck, one of those walking trainers with checks and a handle? Remy bade a truck got Luuk who at that time couldn't even stand ( didn't stand up til he was 3). We attached the truck to the back of his trousers either a soft belt and as he bum shuffled he pulled jus pump with him. Learned to stop and make noise if he got stuck or tangled........ Glad it's better xxx

2old2beamum Mon 19-Nov-12 22:01:41

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 sad
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

Isitme1 Tue 20-Nov-12 09:09:30

Dh is better now and ds is still leaking.
Feel a bit anxious today guessing its the hormones.
Next Friday we are at Sheffield to get it sorted so just trying to wait it out as best as we can.

sneezecakesmum Tue 20-Nov-12 20:22:22

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 sad 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 blush. 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 grin

Isitme1 Fri 23-Nov-12 09:42:43

Its stopped leaking. I think the 24ish hours that it stayed dried helped a lot.

Hes got an appetite too now which is brilliant.
Just hope its not short lived.

Glad the bd is going well

How is everyone

2old2beamum Sat 24-Nov-12 17:37:12

Thought I had better post or else this thread will disappear sad
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

Isitme1 Sat 24-Nov-12 21:16:45

We're all well. Ds goes next week for his investigations.

This pregnancy is totally different to my first. Im very much hormonal and tired and don't like food but I'm hungry
Hope everyone is well x

sneezecakesmum Sun 25-Nov-12 11:44:45

Think we all intermittently ressurect this thread grin

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 sad Tried to jolly her but she said after last time its at the back of her mind. sad 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 sad

Isitme1 Sun 25-Nov-12 11:56:07

I have doubts here and there but I suffer from anxiety and I just have to tell myself I have to be strong for ds n new baby which helps sometimes.

Ds has blood in his nappy yesterday morning and took him to get urine checked and apparently it was ok

How is everyone

2old2beamum Sun 25-Nov-12 12:35:53

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 grin wicked mother.

Grandaughter take notice of your personal midwife try not to worry I am sure your team will be looking after you well.

Isitme1 Sun 25-Nov-12 14:39:37

I think it's the sleepless nights and worrying about having 2 kids with ds condition but it will work out.
Im still doing most of the running round after ds as dh is working 5days

Very tired and im sure I've got another kidney infection. I see cm mw on Tuesday.

See you all on the new thread smile

Isitme1 Sun 25-Nov-12 14:46:17

new link

Come and sign in everyone
See you at our new home x

fdancer24 Thu 31-Jan-13 13:56:23

Hi everyone, I have a 20 month old son who is G-Tube fed. We will be taking a trip to Ecuador in South America. This is a 9 hour long flight. My question is does anyone have any tips on how to keep a baby comfortable on a plane when a child does not eat or drink much? His doctors didn’t have much of any suggestions for us. I would greatly appreciate any suggestions.



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