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Crohn's and Growth in Children

My 11 year old son, Michael was diagnosed with Crohn's in January 2004 via a colonoscopy. His only symptom that we can tell right now is that his growth & weight gain has substantially slowed down since he was 5 years old. Up until 5 he was in the 80% and now he is barely in the 20%.  His bone age is that of a 9 year old which the doctor says is good.  If it weren't for the growth slow down we would never have known he had a problem. Since February he has been taking 2000 mg of Pentasa a day and two iron pill supplements - his iron was low also but is better now. We have not seen any change except maybe two inches of growth and about 4 pounds gained since then. His doctor is telling us from the lack of growth and his blood test results (inflamation indication)that the Pentasa is not working to it's potential.  He wants to put him on 6MP. We are extremely skeptical because of the side effects of this drug. My question is ... are there any specific statistics on the Crohn's growth issues in children? Do a high percent of children with Crohn's whose growth has been compromised start growing and catch up when the disease is effectively treated? Could he potentially be experiencing late puberty also and maybe he will grow alot once he has reached it regardless of treatment? Since he has no pain or discomfort from the Crohn's, is still on the charts and has not stopped growing completely,  if we choose not to switch drugs is there any information or statistics that might help us determine what could be the outcome?  I understand he may also develop the other symptoms of the disease and we might not have a choice at that time if the Pentasa does not effectively treat them. We have also been told that even if the 6MP shows by the blood test that it is working he may not necessarily start growing right away either, maybe not until puberty. We just want to research as much as we can before we dicide whether to subject him to a drug that we are being told is entry level but the side effects are very scary. We are leaning towards not switching him and waiting to see but we are scared to do that also.  I guess the bottom line of my question is how much research and statistics are there on Crohn's growth with children and what are they? Thank you.
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3 Responses
233190 tn?1278553401
Growth failure presents in 30 percent of Crohn's disease in children.  Growth failure is defined as such: a fall in the height percentile of more than 0.3 standard deviation/year, a growth velocity of less than 5 cm/year, or a decrease in the growth velocity of more than or equal to 2 cm compared with the previous year, during early to mid-puberty.

Growth failure in Crohn's is caused by anorexia and decreased caloric intake.  Another consideration would be delayed gastric emptying of solids that may be present in those with Crohn's.

In most cases - I cannot quote numbers - appropriate growth should resume with adequate treatment of the disease.  6-MP is normally used in steroid-refractive disease, being effective in 70 to 80 percent of cases.

You may want to obtain a second GI opinion if this treatment continues to be a concern.

Followup with your personal physician is essential.

This answer is not intended as and does not substitute for medical advice - the information presented is for patient education only. Please see your personal physician for further evaluation of your individual case.

Kevin, M.D.
Medical Weblog:
Avatar universal
Medscape has some info and I found this link:


you'll have to register for the site, but it's free.  that link has the following presentations that I think were from the 2004 Digestive Disease Week
"Altering the Natural Course of Disease in Pediatric Patients" by Jeffrey S. Hyams, MD

"Objectives and Outcomes in the Conventional Treatment of Pediatric Crohn's Disease"  Hans A. Buller, MD, PhD

and "Surpassing Conventional Therapies: The Role of Biologic Therapy" Robert N. Baldassano, MD

Dr. Baldassano is at Children's Hospital of Philadelphia.  he has Crohn's disease himself.

hope this helps.  as an adult with CD, I can empathize.  I had very active disease starting when I was about 13 yrs old.  I'm glad you were able to get a diagnosis.  it sounds like you have a good doc that is being pro-active rather than reactive by treating him now maximizing any benefits.  CD in kids is so different than in adults.
Avatar universal
I have CD and am on Immuran, 100 mg day (2 50's at night before bed). Absolutely no side effects. A friend has a son who at the time was 14 years old and who was diagnosed with CD and he was put on Pentasa and then Pentasa & Immuran. Pentasa alone was giving him headaches, but everybody may react differently. He has grown 4 inches since then - last 2 years. He is right on track. Good luck.
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