Questionable Chrones or something else?

On September 15 of this year my 12 year old son came down with a stomach ache.The next day we went to the pediatrican,who said he had strep.He was given z pak for 5 days.During that time he came down with severe cramps.We kept him on for three days then stopped the treatment.He was retested with a negative result.He became very ill whereby every 3 to 4 days in the evening he would have severe stomach spasms for and hour or so.He has had a pain in his lower right side since the onset.The stomach spasms seemed to have stopped now he is getting several headaches every other day.His hands and feet are cold to the touch.He also gets cold sores which come and go every few days.He has had all the blood work for Chrones disease.All with negative results.He has had and endoscopy,capsule endoscopy, and two colonoscopies.We were with three different doctors with many diagnosis.One Doctor is currently treating him with entecort for Chrones.Based on a consistency with the disease.I feel he does not have enough symptons to be Chrones.No blood in the stool.No loose bowel.We will procede for another 7 days.If this doesn't work we have to start from scratch.Please give me some imput.

[Kevin Pho, MD]

There has already been a very comprehensive evaluation for Crohn's disease.  Other testing to consider would be an anti-OmpC antibody as well as antineutrophil cytoplasmic antibodies (P-ANCA) and anti-Saccharomyces cerevisiae antibodies (ASCA).  These serologic markers may be positive in those with inflammatory bowel diseas like Crohn's disease.

The endoscopies can rule out many GI disorders.  You can also consider blood tests looking for celiac disease and other diseases of malabsorption.

A referral to a pediatric gastroenterologist at a major academic medical facility should be considered for another opinion.

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.
kevinmd_b

[supply]

The anca and the asca tests from premetheis labs are all negative.

[st nick]

My mother said that this same thing happened to my sister when she was 12 years old. It was weeks and many test later, before my sister would speak to a nurse, with whom she had developed a friendship about her involvement with a young boy she had become close to. She told the nurse that she had given the young boy oral sex and had swallowed his seaman a few hours before she became sick. The Doctors have been treating her with prednisone and other anti inflammatory products. Its been nearly three years now and she is not well yet.

Teens will not discuss matters like this with their parents or other people unless they trust them.

Young people experimenting with sex, are becoming sick from doing things that nature did not intend for us to do.

I hope you do well in your search for medical treatment.

yours truly,

st nick

[jessestuckey]

I have Crohn's disease.  It is notoriously difficult to diagnose. Many people (most with IBD that I know) have several negative colonoscopies before anything turns up (the smoking gun is a biopsy showing inflammation--macroscopic inflammation is what ignorant GI's look for).  

Pediatric IBD is even more difficult to diagnose.  Many patients with Crohn's don't have bloody stools.  It is imperative that you see at the very least a pediatric gastroenterologist, but probably and IBD specialized GI doc.  If you're near NYC, Dr. Present at Mt. Sinai (IBD Mecca) is the best.  If you're near Dallas, Dr. Persley (trained at Mt. Sinai by Dr. Present), who is my doctor, is the best.  Both deal only with IBD diagnosis and treatment.  If you can get in for a consult with someone like this you can rule out Crohn's, or find out that that's what it is.  Run of the mill GI docs are simply not qualified to rule out Crohn's disease, in my experience.  I saw 23 GI's before going to Dr. Persley, and most thought I didn't have Crohn's, while a few dissented.  Dr. Persley said it was Crohn's, and all of the skeptics were silenced.  I also had 12 colonoscopies showing mostly unremarkable stuff.  The negative Prometheus tests don't rule out Crohn's, either.  It does, however, make it less likely.  Tell whoever does the next scope to take as many biopsies as possible.  That's the key to finding Crohn's.  There is, according to Dr. Present, very little correlation (if any) between macroscopic inflammation and symptoms.  VERY few GI generalists know this.  This is why they are unqualified to diagnose IBD, or particularly to "rule it out".  

I hope this is helpful.

Jesse

[GI Nurse]

The Prometheus testing is usually quite definitive and accurate from my experience.  If it was negative, you can probably be pretty assured that it's not Crohn's Disease.

[Lori707]

A related discussion, Another symtom for Chrhm's? was started.