Replies sorted oldest to newest
Is she seeing a pediatric GI? Nowadays they are much more proactive with treating young children than they were a decade or more ago, including opting for biologics and surgery before they lose those growth years.
I'd get a second opinion if the best suggestion is to eat more... Hopefully other parents will chime in soon. Some have had very young children with UC.
Our daughter was diagnosed at age six. At the time she was only 42 pounds, and I was aware of the ease at which she was going to lose weight. Two pounds, when you only weigh 42 is a relatively high %. To make it worse, she had inflammation throughout and had reflux vomiting - making it harder to keep weight on.
We tried to get her treated as soon as possible: Flagyl, prednisalone, sulfasalazine within two weeks. Two months later she was pretty asymptomatic although her numbers were not good until Feb. We gave her Pediasure (she didn't care much for it), pudding, anything to keep the calories coming. But with poor absorption and fast transit, food and diet didn't do much to help.
Honestly, if it were me, I would be working toward remission of symptoms - a round of prednisone, Flagyl, and / or biologics - until something is effective. I know putting so many meds into our little ones is so hard. We worry about short and long term effects. But getting the UC under control must be a high priority.
Diagnosed at six, surgery at seven, takedown at eight. We are so glad. She has grown a ton, us now twelve and is thriving. You would never know she ever had UC. Keep pushing for better.
No I don't have a kid but I was the kid.
At 2 I had my 1st surgery and colostomy. I weighed in at 14lbs pre-op.
My mom was an RN and my dad a genius... They put everything into a blender for me (I couldn't eat solids for over 2yrs)...
My mom made these milkshakes with whole raw eggs (yes, I know...nowadays people say not to eat them but there was not much availible in protein powders in those days. Now you can use a whey powder or soya), honey, orange juice or other fresh juices or almond or soya milk, liquid vitamins, bananas and/or berries.
Add ice and vanilla extract or coco powder and put it all into a blender.
It worked quite well for me and I mananged to put on a bit of weight inspite of the colostomy.
They did the same thing with homemade mashed potatoes mixing in a raw egg (it cooks in the hot potatoes), cream, goat or other cheese and various overcooked veggies (broccoli, carrots...)...they have long since become my go-to comfort foods whenever I am sick.
You can adapt these to her dietary limits and restrictions changing out cream for yoghurt or chopped chicken for cheese.
I make some very rich soups too. I use beef, veal or lamb bones and lots of herbs and veggies (parsley, cilantro, onions or shallots, celery, carrots, courgettes, ripe tomatoes, a potato...)
I brown the bones with a bit of meat still attached to them in a drop of oil and then cover with boiling water and add all of the veggies & herbs. She is probably too young for too many spices. I let cook for about an hour, remove the bones and take off the meat then blend it all with an immersion blender. Add salt etc to taste.
It is so tasty, a bit thick and comforting and can be eaten warm or hot...some people add a spoonful of cream to it before serving to add a bit of fat but I prefer, for a child to add some baby pasta or rice to give it more texture if needed. (I only do that if I don't blend it but keep the sauce liquidy...the baby pasta or rice make it nice and filling.
I have tons of recipes if you want to PM me...Most do not take long to make, can be kept a long time or frozen into portion sized cubes (in an ice cube tray and then I put them into ziplocks in the freezer).
I hope that this helps.
By the way...at over 50 I have absolutely no problem gaining weight now! I am still a poucher, I have a k pouch now (internal abdominal continent ileostomy) and am doing just fine.
My daughter was dx with Indeterminate colitis (likely Crohn's) at the same age I got my IBD dx (age 11).
Her docs are at one of the top 5 in the nation for Peds GI.
While her GI has said they sometimes are more aggressive with Crohn's over UC, the thoughts these days with children and IBD is treat them with biologics early (Remicade and Humira are the top 2). They really really really want to suppress that inflammation. A friend of mine has a 6 year old who has had IBD since age 2-3, and she's on Humira.
My daughter is on Humira and methotrexate.
My daughter likely had simmering IBD for awhile. Over the year from 10-11, she gained zero weight. Once we got her IBD and arthritis controlled, she went from 65lbs to over 80 in one year, and gained 4 inches.
Please ask about a more aggressive treatment, perhaps. It is what higher centers are practicing these days.
Here's an article regarding accelerated treatment at least in Crohn's.
Thanks for the advice from everyone. Yes, she does have a pediatric GI, a very good one who is doing annual scopes and follow ups. No, she doesn't have any excessive inflammation or damage yet, she just had a scope two months ago and it looks great. Her only symptom right now is that she cannot gain any weight and she eats a ton of food (about 4x normal) so it gets backed up and stuck on occasion. We have her on a diet with no food preservatives, no dyes, no artificial ingredients etc. We try to have her eat more fat rich options but the kid loves veggies, yogurt and lean meats most and dumps most of the other stuff off her plate. We have a nutritionist who recommended nut butters and granola bars and the like but she wont eat those much. She loves smoothies so I will try the ones recommended and adding oil, cheese and butter to her veggies and meats is a great idea. I appreciate any other suggestions too!