DownSyn Forum

[matthews]

Hiya all ellens been back in hospital for the past 7 weeks due to measles however she got a rota virus while in hospital she lost a lot of weight and now she isnt putting any back on at all.The hospitals managed to get her upto 9lb2oz and shes refusing to put on any more she has 3 hourly feeds of nutriprem2 with added sodium 100 mls along with solids dinner+desert.She is also on T.P.N for 12 hours a day to help her.
Now the hospital seem stunned with this and she cant have her stoma reversal until shes gained weight talk about being between a rock and a hard place...
Is there anything that you could advise me on suggesting to the consultants etc you never know there maybe something they have not thought of themselves after all they are only human?

many thanks in advance

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[Tigger]

The only thing I can suggest is something high in fat and sugar. The thing that helped Talitha a lot was chocolate dairy desserts - we call them chocolate yoghurts but I don't think there is any yoghurt in them. They have the consistency of smooth baby food so are easy to get down. Talitha also benefited from probiotics which help her gut process food more efficiently.

I know it seems bad to feed kids chocolate anything but we got to the point that we just did whatever worked at that was it. Our dietitian recommended any foods that were fattening - butter, cheese, chocolate stuff...can't remember the full list now.

Talitha struggled with her weight for her first 18 months and was diagnosed with Failure to Thrive from early on. She was fully tube fed until she was 2 and has really only started to thrive over the last 12 months. She is 3 1/2 now -still tiny but a good weight now.

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Karyn
Mum to Nikki (Jul 89), Stefanie (Sep 96), Joel [June 98] and Talitha (DS) (Nov 05) AVSD/PDA repaired 23 March 06

"I will praise You, for I am fearfully and wonderfully made; Marvelous are Your works, and that my soul knows very well." Psalm 139:14

[matthews]

Well she went for a scan on friday they popped some dye into her bowels to see how much is left as they took a load away when she got N.E.C however they said there is enough to reverse her stoma good news however even tho they can reverse it...they say it wont make a massive improvements on her weight gain due to the amount shes missing they have now placed her on 24 hour feeds through the n.g tube along with her tpn that they have yet again increased i think they are going to do the reversal soon as her consultant is saying now there is nothing pysically stopping her from having it done then if she still dont gain weight after that we will have to take other steps basically once shes back home we can feed her anything we want high in fat etc were just hoping the reversal does the trick

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