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
doh! Was sat here trying to figure out how little isitme managed to swallow the vile barium....! 
Hope they can find a way to sort his tummy troubles out. I'm sure it is refluxing that is causing him to be food averse.
Today DGS had 20 mls of blended and sieved banana, orange juice, baby rice and a drop of milk! Didnt bat an eyelid and it stayed down. Not exciting I know but its the beginning. Chucked loads away but everyone starts somewhere. 
DD is going to push for domperidome or something too, but we'll carry on. We looked like two mad scientists in a lab 
Yay!!! Another strike for real food . I am not anti-formula BTW. Without it my little man wouldn't be here, but I am pro-choice when it comes to nourishing our precious little people.
Grandaughter no 1 Hoping so much things work out OK for you 
I am hoping you will sort GGS soon it sounds you are going along the right lines.
By the sound of things life is being tough for you all. Sometimes I want to scream give us a break!!
Appointments all week Friday DD3 has an appointment with SS she has decided to trace Birth mum so we are all geared up for this and I really need to be with her for support. 15.00 this afternoon telephone call from Dr, GOSH says DD4 needs Gammaglobulin infusion Friday What the hell do I do----who needs the most?? Am sure we will sort it out 
Hope you are all OKish
Sleep well all you little scallywags
Oh no 2old......can the SW appointment be moved to Monday? ( big ask I know) Does the infusion have to happen on Friday. Could they not squeeze it in on Thursday? ......I don't envy you at all 
Thanks galli DD3 Down syndrome, is so excited, have to keep her feet on the ground as DD2's went belly up they did not want to see her 
but they belong to the National Front so we were VERY relieved. Thanks for your thoughts My feelings are DH (old fart) can take DD with a long list and I go with DD4 (old fart useless with anything medical) Oldsneeze understands.
Awww granny. Its horrible when youve got to be in 2 places at once.
My example
Ds is ill today and wont let me leave his sight but I need the loo!!! Lol 2 places at once.
Hope everything picks up x
My neighbour has a commode I am sure she will lend it to you
xx
Isitme...now we know what you were doing in your long silence Congratulations, all you need is for DSs tummy to behave itself.
2old. Heavens I would not cope with all that! If the appts cannot be rearranged I think you've got the order right. I would not trust my old fart with anything complicated! Just hoping your particular break comes along soon and DD3 has a happy outcome. Difficult one.
galli....2nd day of BD - 60ml of the banana/rice this morning, 60ml at lunchtime of corned beef hash, and 2 oclock 60 ml of baby rice and prepared formula. All stayed down with no retching after months of puking all the time! Think this blended diet is going to be a winner Didnt stop the little ratbag from taking off his nappy and peeing all over DDs sofa!
DDs 20 week scan went well. All OK. Those pictures freak me out (yuk) They look like a little alien, but DD says I am peculiar
Isitme: CONGRATULATIONS!!!
Sneeze: so glad your DDs scan went well and so glad BD seems to be working its magic :-D.
2old: Hope the appointments all go well on Fri and DD3 gets the answer she hopes for.
Hugs for all xxx
galli rapidly losing confidence in adoption SW who rang today and to cut along story short she feels DD will not cope with rejection FFS both me and our DD2 also Downs have coped with rejection in adulthood and DD3 is aware of this. Why do they think this, she has a loving family to support her. The reason her BM felt adoption was best was that she was homeless. Nought to do with this thread SORRY
Grandaughter are you saying you are going to make me a Great Grandma again hooray
Oldsneeze s glad all is going well with DD
Sleep well all you little Scallywags and you big Scumbags
xx
Awww glad the scan went well. Did dd find out what shes having? I did with ds and will do again lol.
Extra happy for dgs and I hope the bd suits him well. Ds kept bringing it all back.
Thats a hard 1 granny.. I hope theres no rejection. Bm should of got in touch earlier if she wanted to see dd.. but I knownothing in these situations so I will keep it zipped 
:)
Yep granny thats what im saying
Sneezesmum its got to be done
Since Thursday I've been feeling sick after evening meals. Im sure they call it morning sickness 
that's when I thought right I need a test.
Did another this morning and its slightly darker than yesterday
X
isitme. DD was sick for ages, and still at 20 weeks has the odd day. Strange as very little with her DS. She doesnt know the sex and didnt ask. Would like a girl to even it up, but as long is its healthy she will be happy. She keeps hovering between wanting to know and not.
2old. dont the SWs think you know your DD best and what she will cope with? Bit of the old 'we know best' (annoying) attitude. Hope she can get in touch with her BM and it goes well. I'm sure the majority of BMs have a deep attachment to the babies they gave up for adoption no matter what the reason, unless I am a hopeless romantic?
BD going swimmingly, and the only thing holding us back is our fear that its just a fluke and the puking starts up again. I am thinking it was just the sloshiness of the milks that caused the puking and refluxing. Just thickening it with baby rice keeps it in his stomach. He has not eaten/or tubed anything for breakfast since the PEG as its always puked up. Today he had 60 mls of banana/rice and 60 mls of water! Still going down the food route rather than just thickening his milk as the nutritional gain is better imo. We are very
xx
Oldsneeze I hope your joy lasts
Grandaughter hope all is well with you all xx
DD's gammaglobulin infusion has been postponed 'til next week GOSH are being a bit precious want only what they use!!
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AAARRGGHH. DGS had major puking session and had to be collected from nursery for puking! DD thinks its cos he was a bit constipated as he was not hot and OK once he poo'd. Made a retching face when asked if he wanted a bit of mummies sandwich! Also she made him sleep in his cot so she's convinced it was revenge Think just a hiccup as no sign of refluxing with the BD or of slow gastric emptying. I'm sure it will be OK tomorrow. Joy short lived We will get there though, sure this is the way to go.
2old glad the infusion has been postponed. I'm sure GOSH know what they are doing. Well you know what I mean, NHS runs on goodwill and luck
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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