My 4 Year old May have CROHNS--anyone else have experience with such a young child?

[juujuubug]

my daughter was diagnosed with crohn's in the summer she turned 12 in oct so i pray for your daughter but the doctor told me it is a good thingthat we caught it so earlier most of the time people don't kow until they are older and by then they have more damage done it is hard my daughte takes 11 pills a day and ccould not have a lot of food like kids want no caffine no pizza no salsa no corn and other things we are sstill finding out so good luck and let me know how the test goes i love the gi doctor that my daughter has he is so good

[Kel123]

123dietdrpepper,

Thank you for the information. I actually live in Richmond Va, and I will probably seek another opinion from John Hopkins. I know they have a pediatric IBD research team there. If I may ask, what were you actually diagnoses with?

JuuJuubug,

I am so sorry you are also dealing with this. I am at the point now where I just want to find out what it is so we can make her feel better. I heard it is much more common in the pre-teen to teenage years. I am feeling lucky that if this is what it is, we have caught it early, and can watch her very carefully. I will add your daughter to my prayer lists also. This is so much for a little child to have to deal with. I love my GI dr. also, and he is being very careful because he doesn't want to diagnose her and label her as crohns unless he is absolutely sure that is what it is. He doesn't want to be wrong and then have her deal with the consequences of it long term (insurance wize) Thank you for your post. I hope your daughter stays well. Did you have the ansca and asca labwork done in California to confirm the diagnosis? (crohns antibody testing) What other tests pointed to crohns if you don't mind me asking. Thanks so much. I am the type of person that does better the more info I have. Have a happy holiday.

Kelley

[123dietdrpepper]

Wow! John Hopkins would be a great option for you. Dr. Bayless saved my life. I was in my early 20's and 5'4" and went down to 90 lbs. I actually had endometroisis with involvement of the bowel and bladder. It caused the bowel to adhere to the abdominal cavity. Another doctor treated me for 4 years for Crohns and I did not get better.Now we know why - it helped being treated for the correct disease. I pray that your son is properly diagnosed and does not in fact have this disease.

[Kel123]

Well, I have an update on my daughter....Christmas eve day she had 8 episodes of bloody mucousy diarhea and severe stomach cramping. It came and went all day. I felt so bad for her, but selfishly did not want to take her to the ER and ruin her christmas. I fed her a very bland diet and rested her bowels. Christmas day she still had some pain on and off and more stools than usual. Thursday she had an upper GI with small bowel follow through. It was abnormal and showed thickened folds in the duodenum and inflammation in the terminal ileum. There results are consistent with her clinical picture and biopsy results of chrohns. To throw a loop in things...her ANSCA and ASCA crohns antibody testing from California came back positive but looked like more of an ulcerative colitis pattern. The Dr. has put her on Asulfidine 3 times daily and metronidazole. I have another appt in 2 weeks for blood tests and a full blown sit down talk with the GI specialist.
Does anyone have any suggestions on dietary restrictions? The main things I should avoid for now? Any help would be greatly appreciated. Thanks

Kelley

[juujuubug]

i hate to here about the test came back with what you was hoping not to her .You ask what test was ran on my daughter he did 3 different blood test at first 1 was to see if she was allergric to gultin i thibk and the other 1 not to sure and the crohn's and ulcerative colitis so he ran the scope down and up her from that he could tell it was not ulcerative colitis and like you said your doctor wants to make sure what is is before he puts down crohns our doctor told us the same thing so he did a biospoy of her intenstinse and it came back as crohns i live in alabama but he is a pred. gastr. doctor and a very good 1 we go back tomorrow 1/2/2008 for a check up so wish us luck and as for what she can eat my daughters doctor said we just have to do a trial and error nobody is the same .My daughter can not have caffine,corn pizza but she can eat cheese pizza who knows why ,she can not have spices like chilli ,tacos, and steak sauce and we are still learning more so let me know how things go.Tomrrow when we go back i am going to ask about my daughters slepping cause she can not sleep not sure if it has anything to do with the medsshe is on or what but she won't go to sleep until 4:00am sometimes and by then she is crying cause she is so tired goodluck and i will letyou know how things go tomorrow