3-year-old diagnosed
Sun, September 15, 2013 11:24 PM
Hi everyone. My daughter just turned 3 and has been diagnosed with UC. She has it throughout her entire colon. They found some abnormal cells between her large and small intestine that are making them question whether this is actually Crohns, so she is having further tests done. I have to say I am feeling incredibly sad and overwhelmed by this. I feel guilty like maybe there was something I could do to prevent this...and I keep getting asked how a baby gets something like this and it makes me feel like it is my fault. I have no idea how this could happen to a toddler this young. Anyway, I am struggling to find a balanced diet for her. She is anemic and low in Vitamin D. I bought the vitamin d chewables and I am supposed to be getting an iron supplement for her but I am sooo worried about doing this. She is taking a 5 ASA twice daily and it has given her normal bowel movements but they are hurting her and I worry if she does iron supplements she will become horribly constipated and in pain. But I was told not to give her any kind of fiber so I have no idea how to prevent that. She went from horrible diarrhea to this. How do I keep her in a balanced happy medium with her diet without causing a flare-up? She is healing and heading into remission right now. Thanks so much for any ideas or encouragement. I am struggling not to be worried about her future with all this.
Joined Sep 15, 2013
Tue, October 01, 2013 7:34 PM
Reply posted for artsychic323.
You are not alone, and not to blame. My daughter was also diagnosed at a very early age (9 months old) and I had suspicions that anti-biotics triggered the IBD but have been assured by her GI Dr. that there is no known cause. At CHOP we are actually part of a study to find the cause of so many little ones developing IBD so early in life (possibly genetic?). Lets hope the study turns up something useful.
We work with a nutritionist in the GI department, you should be able to consult one to help with the diet questions. My daughters nutritionist has been more helpful in regards to diet, nutrition and feeding than the GI doctor.
Good luck!
Joined Jun 16, 2012
Tue, September 17, 2013 12:16 PM
Reply posted for lizzies mom.
Thank you so much. I'm so glad your daughter is doing well with it. That is what I want to work towards. I am not a patient person so thanks for the reminder, lol, I need to be patient and take it all in small steps. I appreciate it.
Joined Sep 15, 2013
Mon, September 16, 2013 3:17 PM
Reply posted for artsychic323.
I have walked in the same shoes. My little one was sick from infancy and dx w/cd @4. You will find a balance with her diet, it takes time and patience. I understand the concern the dr has with fiber, try pushing water, it may help move things along. In time you may be able to bring fruits (I used to cook them in the beginning) back into her diet. It has been 9 years, Liz is now 13 and doing very well. There was a huge learning curve and it did take a number of meetings with a nutritionist to re-vamp our lifestyle.
Joined Sep 9, 2009
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