Cystic Fibrosis and Short Gut Syndrome(eating)

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MissMadi
New Member


Date Joined Nov 2008
Total Posts : 5
   Posted 8/29/2009 1:45 PM (GMT -7)   
Madison is 19 months old now and just reached 20lbs. She now has decided she doesn't wanna eat which I know is a stage however I'm afraid she is gonna start to lose weight.We attempted bottle breaking and now the only way to get her peptamin jr. in her is by bottle and I really don't wanna go the feeding tube route
Any advice for Madison would be greatly appreciated
Thanks
MissMadi

Gemsi
Forum Moderator


Date Joined Feb 2007
Total Posts : 1050
   Posted 8/29/2009 2:39 PM (GMT -7)   
Hi there,

Too be honest I don't have much info for you, as it's been a while since I was a baby, and I don't think I've ever had the short-gut thing. I know my brother does and one of my friends does.
I'm just awkward with food, but have become very much addicted to finding the most highest calorie food and eating that as long as I also fancy eating it at the time. MY stomach is pretty tempremental as too how much it's going to let me eat. But, I am currently slightly overweight even though I am pancreatic insufficient and actually need a lot more enzymes than my brother.

Have you spoken to your hospital dietician? Do you even have a dietician? They may be able to suggest some new ideas on how to get your child eating.

I know the stage of children not wanting too eat. My nephew, who doesn't even have CF is a bit funny with food, and he has just turned 2 last month. He'll only eat like 2 chips and a slice of bread (but leaves the crust) in a meal, then he's bored of eating and starts crying to be let out. He'll eat yoghurts liek they're going out of fashion though, same with milk.

You're right, in that it could be a phase, but if you haven't yet spoken to a dietician, then I would find one to talk to. They should know with your childs height and weight whether there is a problem or not.


I've never had tube feeding. I would never say no too it.....I'm much more likely to refuse nebulisers. However, not knowing what it is truelly like,except when I've seen friends having it, I can't really comment on whether it should be given to your daughter or not.

I'm not very helpful am I? I'm sorry, just wanted to make sure you had a quick reply from someone.

Hope Madison is well other than her weight.
Gem x
Moderator of the Cystic Fibrosis Forums
Diagnosed with: Cystic Fibrosis, Asthma, ABPA, Clinical Depression, Mild Liver Cirrohsis, Mild Osteopenia, Erythema Nodosum. Waiting for final diagnosis on Muscular Dystrophy type symptoms.
Medication: Creon 10,000, Vitamins A,D+E, Serevent, Salbutamol, Paracetamol, Tramadol, Nefopam, Ursodeoxycholic Acid, Trazodone, Slow-Sodium, Azithromycin, Metachlopromide, Omeprazole, Tobi Ineb, Fresubin Liquid Feed, Skandishakes. I use PEP device as my physio.
Had a Port-a-cath fitted on chest wall since Nov 04
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MissMadi
New Member


Date Joined Nov 2008
Total Posts : 5
   Posted 8/29/2009 2:47 PM (GMT -7)   
LOL...Atleast someone responded~
Madison has a nutrtionist come every month but everything she has suggested has not worked :(
It's too funny that you mentioned the yogurt because she will eat as many yogurts as I will give her which is fine but thats all she wants to eat
Thanks for the chat
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