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My 9 yr old son has crohns. After reading the stories about so many other children and how bad this disease can be i feel like we're relatively lucky in that his case seems to be fairly mild i.e. only 1 hospital visit at the time of diagnosis, no feeding tubes, no malnourishment or drastic weight loss (altho his growth patterns have slowed). The initial prednisone treatment got things under control and with the 6MP hes had no flares. I feel like the crohns is under control -- sadly we're now managing the side effects of the meds and considering making a move to methotrexate.

But given the fact that this seems to be a mildish case (at least right now) i question why the Dr started us out on 6MP and not something milder like Pentasa. Our Dr says pentasa would guarantee a flare in 6 months -- i dont know?.. It just seems to me you start with the milder drugs and move up as necessary.

 Reply posted for jacksmother.

I feel the same as you do. I only have a mild case and compared to some other people's posts, I almost feel like I don't have it at all! My Gastroenterologist started me on Pentasa first thing, and except for when I tried to switch to Sulfasalazine because it's cheaper and he said it would be better because I was trying to have another child, but I ended up being allergic to it. I am back on Pentasa and it has been working fine for me. I am not on a low residue diet, because I have hypoglycemia as well, and need the fiber to balance my blood sugars. Avoiding milk, cream and icecream has done more to help than anything else, for me.  When the small intestine is damaged it can't digest and absorb the lactose, which then goes into the colon and causes havoc there.
Hope your son can find his balance with this disease.

 Reply posted for jacksmother.

I am Mom to a son who was diagnosed last year with mild Crohns.  He was first diagnosed when at 14 yrs old, he went from 90 lbs to 78lbs, had perianal fissure which became a a fistula.   Looking back, he had slow growth in first grade but seemed to catch up. 

He was put on Asacol.  It has very little side effects.  It has held him in a level place, although blood work shows his inflammation levels have not dropped.  He has gained back the weight and grew 3 inches, which now at 15 he is 5'4", 96 lbs.  The U of Mich hospital did a second consult and would have put him on Imuran.  Because it wasn't "urgent" we are trying to stick with Asacol. 

I should mention that I too am a Crohn's patient and  have been on Asacol for 10 years.  I was elated to find this past January that my symptoms had lessened and "for me" the best was that my iron levels were, for the first time, in a normal range. 

 Reply posted for jacksmother.

My daugher is 9 years old and was diagnosed in September 2009 with Crohn's.  Her ped gi doctor was so certain after the colonoscopy that she had crohn's, she started her immediately on sulfasalazine.  She said she would probably switch her to pred when she got the final report from pathology; however, when the report came in to confirm crohn's, my daughter was responding so well to the sulfasalazine they have left her on it.  She's been doing great on it thus far - we are back down to 1 bm a day, no blood or mucus and hardly any tummy aches.  The sulfasalazine has worked very well for my daughter.

 Reply posted for jacksmother.

I think it depends on how mild/moderate/severe or diffuse the disease looks when it's diagnosed.  We were told from day one, based on the colonoscopy, that our son needed steroids and 6-MP, that pentasa wouldn't hold him.  Pretty early on into 6-MP our GI was concerned that he wasn't in remission (felt better but still not growing) and we would probably progress to remicade, but to give it a little longer to be sure.  Which is exactly what happened.

 Reply posted for loving mother.

Thank you all for your thoughtful responses. I actually spent quite a bit of time on the phone with the nurse yesterday - thank god for the nurses- who explained so much more to me. And while this is all still so new, frustrating and down right scary i feel like with each day im learning and able to process more. Thanks for your support  

 Reply posted for jacksmother.

My son is 10 and was diagnosed with Crohn's this summer.  His case is, according to the doctor, mild (symptoms) but in every part of the digestive tract and he has a perianal fistula.  Our physician told us every single case is different and therefore it is approached differently.  However, he seems to favor starting with whatever meds have the least potential for side effects and working your way up.  My son started with pentasa, prilosec, flagyl.  Next we went off the pentasa and on prednisone.  Now we are back on the pentasa and trying to wean off the prednisone but since the symptoms are coming back we are probably headed to either Imuran or Remicade (because he's having such trouble with the fistula.)  It is really frustrating and confusing to me to think that it's not a case of  "take this medicine and it'll help."  And I often find myself overwhelmed at my son's appointments even though the doctor is so very patient.  I am writing down my questions for each appointment and have even called the nurse for clarification about stuff.  Both the doctor and his nurse have said multiple times that they expect to hear from the patient's parents a lot in the beginning of treatment... that they know what a big learning curve it is.  So, don't hesitate to ask questions... I think they expect it!

 Reply posted for jacksmother.

Hello. My son is 8 and was diagnosed with Crohns a year ago.  He initially started with Pentasa because the doctor thought it may be enough even though my son had lost a lot of weight.  My son's symptoms went away just on Pentasa, along with prevacid because my son also has it in his stomach.  The problem was that my son remained severely anemic and protein deficient.  He was taking 120mg of Iron a day and continued to be anemic.  Then the doctor checked his calprotectin (something in the stool that  is supposed to be a good marker for disease activty.)  My son's calprotectin was 1650 and normal is about 65.  So the doctor felt like he had no choice but to start Imuran.  I agreed because I did not want my son to flare again.  So I think you should have the doctor be more specific as to why he started with one of the stronger drugs.  I hope this helps.  I know I was terrified to start Imuran but I the doctor told me with a calprotectin that high my son would flare again and I did not want that to happen.  My son's anemia is still not under control and he has been on Imuran since June.  I am hoping at his appointment in November it will be better. I will keep you in my thoughts.  take care.

 Reply posted for jacksmother.

Wow, don't be afraid to ever question a drs. line of treatment. 

My daughter has been a CD patient for 6 years now.  She is the same age as your son, but given the fact that she was only 4 when diagnosed and couldn't swallow pills, they started her on Sulfasalazine.  The pharmacy mixes a compound for her monthly and the disease has luckily been in remission.   Now that she is getting older the next step for her will be Pentasa (being they are pill form).  

It doesn't hurt to ask ....... I would think save the "bigger guns" for a bigger battle.  

Sulfasalazine and a low fiber/residue lifestyle has been working so far and I pray continues.

Good luck to you and your family.

Lizzies Mom