I want to get this out there to get as many ideas as possible to talk to her doctor
My daughter is under the care of a pediatric gastroenterologist. Like in my title, I want ideas to take to her doctor. I'm tired of seeing my daughter in pain and uncomfortable.
My daughter was born on May 4, 2008. She was put on similac Advanced when my milk supply didn't come in. She was happy but very gassy. She choked frequently. She didn't spit up much but when she did it was the whole bottle. She gained pretty good but was lower than what the Dr wanted. So at 2 months I switched her to Similac Isomeal. At 3 months Rice cereal was started and only rice. She got better wasn't as fussy and didn't spit up at all. She still choked frequently. She started hitting milestones she hadn't done yet. Holding her head up for more than a moment. She smiled. She even sat up for a few moments at 3.5 months. We thought she was doing great. At 4 months the diarrhea started. It was really watery and would burn her bottom leaving painful blisters. This would come and go for several weeks and then it went away for the last time. At 6 months it came back and never left again until she was a year and taken off formula. We thought maybe it was the formula she was on. She gained a couple of pounds and a couple inches in height. She had normal poop. Well after a couple more months, in July, it came back only this time worse. This time she stopped eating too. Everyday she ate a cheese stick and that was it. Her favorite foods she refused. Sweets she refused. What toddler doesn't want sweets?
She had allergy testing to casein, rice, soy, milk, there was more but I can't think of it right now. Everything came back normal. No allergies. We did elimination diets to see if it was an intolerance to all of the stuff. Nothing different. It wasn't hard for this since she only ate cheese anyway. After everything came back normal we started her on kid boost. We finally got in to a ped GI. She was started on Prevacid for silent reflux and fiber to see if that could possibly help her.
On the fiber she started sleeping through the night. She started eating. She wasn't gassy anymore. She stopped spitting up. She was more active. Overall happier and more content. She started talking, smiling, laughing, dancing. Her big round belly went away. The ped GI took her off the fiber because it made her diarrhea worse. She came off the fiber. She stopped sleeping through the night and now would actually wake up screaming. She still has diarrhea. She started spitting up again, even on prevacid. Her big swollen belly is back. She is more exhausted all the time. Fussy and gassy. She doesn't smile as much. She doesn't laugh as much.
This is how my daughter's life is. She is in pain, but they don't know why. Other than the intestinal issues my daughter is happy and healthy. This top pic is my daughter on halloween in a 3-6 month onsie. She was days from being 18 months. She was still on fiber and had a sunken stomach
This is from a couple days ago. Her belly is swollen and as you can see she does smile.
I know she's a tiny kiddo, but my first thought reading your info and seeing the pics is either Crohns Disease or UC. Has your GI ruled either/both of those out? How about Ciliac?
Wow, that poor baby. I have no ideas, but I hope you are able to figure it out soon. Beatiful girl, by the way.
If it were me and she was doing so good being on the fiber, I'd just start doing it again...if it were me. But I never liked playing by the rules...
But really, why can't the doc see how good she was doing on the fiber and how she is since you took her off? It would not hurt her to start it again...
If she did BETTER on the fiber, it's not Ciliac or Crohn's disease...
Quoting workinghorse:
I know she's a tiny kiddo, but my first thought reading your info and seeing the pics is either Crohns Disease or UC. Has your GI ruled either/both of those out? How about Ciliac?
My son does similar things swollen belly refusal to sleep issues with bowels, and very tiny. He is two and can still wear 6-9 months!
I would tell them to put her BAC on fiber it sounds liek she does need that, and then for them to treat her dirreha, then they can figure out WHY she has that. Thats all i can think of . Have them do some tests on her, i would suggest a barium eniema, Upper GI series with suck/swallow, Lower GI series, Tummy X-rays and MRI of the GI tract. Um if htat doesnt turn up then a biopsy would be wise..have them test for chrons celiacs and do lots and lots of research!
GOod luck if you have any questions or just want to vent feel free to PM me
This is what I was thinking also. Poor baby. I hope you get your answers real soon.
Quoting workinghorse:
I know she's a tiny kiddo, but my first thought reading your info and seeing the pics is either Crohns Disease or UC. Has your GI ruled either/both of those out? How about Ciliac?
to me it sounds like it could be celiac disease
http://www.webmd.com/digestive-disorders/celiac-disease/celiac-disease-symptoms
have you had her tested for that?
it really isn't a terrible thing to live with, it's just a matter of changing your diet.
she might also have a gluten intolerance which is also common and can be controlled with a diet change.
same here.
Quoting workinghorse:
I know she's a tiny kiddo, but my first thought reading your info and seeing the pics is either Crohns Disease or UC. Has your GI ruled either/both of those out? How about Ciliac?
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on Nov. 19, 2009 at 10:20 PM