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11 Year Old Son Diagnosed with post infectious dysmotility syndrome

My 11 year old son has had Stomach Pain for 4 weeks now.  The pain is very severe.  My son was in the hospital last weekend.  The pain is located below the left rib and is about two inches from the center of his abdomin.  The pain will come on quickly and will last anywhere from 30 minutes to 7 hours. While in the hospital the doctors ran many test and concluded that he had post infectious dysmotilty syndrome.  He is taking the following medications Elavil, Zantac, levbin without any relief.  These meds do not do a thing for him.  The doctors sent us home and told us that he will be in pain and we had to deal with it.  The doctors don't seem to believe how bad the pain is and will not help us.  Mom and I feel extremely helpless and want to do anything we can for him.  Is it common for this syndrome to cause so much pain?  My son will cry for hours on end.  If the hospital and GI Doctor want do anything for the pain what is my next step? I live in Orlando Fl and went to Arnold Palmer Hospital.
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Avatar universal
My son is better!!!!  My son had his appendix removed.  The bottom of the appendix was inflamed.  Every test in the book was performed on my son and all were negative.  The doctors wanted us to take our son to a shrink but we counldn't do it because our son is just too well adjusted in school, home and family.  We insisted the doctors go in and look and they found the problem with a laporoscopy.  Now I can't keep my son down to recover from the surgery.  This is a great problem to have.  My advice to parents is to never quit and insist the doctors complete every test possible when you have children in pain.  It worked for us.

Thank you!
Helpful - 1
Avatar universal
I am so glad your son had the necessary surgery - he is rather lucky in that the appendix did not burst (as mine did) - good thing you were so persistent and things turned out! Diagnosing appendicitis is difficult - perhaps that's why no doctor could find it until actually going in and looking.
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233190 tn?1278549801
MEDICAL PROFESSIONAL
I would certainly suggest another GI referral.  Things like GERD, an ulcer, or inflammation can also cause the symptoms.  You may want to consider an upper endoscopy for further evaluation.

I would also test for a bacteria known as H Pylori - which is associated with ulcers and inflammation.  If present, appropriate antibiotics should be prescribed.

I would consider a second GI opinion for further evaluation.

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:
kevinmd_b
Helpful - 1
Avatar universal
A related discussion, dfadfdaf was started.
Helpful - 0
Avatar universal
I have gall stones. The things you have stated seem very much like what I have. The pain is usually located where the ribs meet. It's as if someone stuck a pole straight through you and your hanging there. Moving to get away from it as if a cramp.


I had 4 kids with no drugs at all and this pain hurt more!!

See a peds GI

GOOD LUCK
Helpful - 0
Avatar universal
Try Orlando Regional:

Bornstein, Jeffrey A., M.D.
Pediatrics
Pediatric Gastroenterology
Pediatrics
83 W. Columbia St.
Orlando,
FL 32806
(407) 650-7290
(407) 650-7299


Medical School George Washington University
Board Certification AB of Pediatrics, AB of Pediatrics - Gastroenterology
Residency Wilford Hall US Air Force Medical Center
Fellowship Walter Reed Army Medical Center

Good Luck!
Helpful - 0
Avatar universal
Thank you for you advice.  I really don't think my son had Post Infectious Dismobility Syndrome.  I am starting to think it is a gallbladder problem.  I have logged his pain for a week and a half and here are my findings.  

My son usually wakes up at 4-6:30 with pain in the median, top part of his stomach, Right between the ribs below the sternum.  The pains will last a few hours.  Almost everyday my son will have the pain but there are days when he will only have the pain once or twice a day.  Here is the schedule of his pain.

4:30-6:30 A.M. My son wakes up with the pain that will usually last 2 hours.
8:00 He will eat breakfast.
9:30-10:00 he will be hurting again a few hours.
12:00-1:00 He will eat lunch.
2:00-3:00 He will be hurting again and last a few hours
6:00-7:00 Dinner
8:30-9:30 The pain will start again and last for a few hours.

The doctors did not want to test him for Gallbladder problems because he did not meet the 4 f's.  Fat, Female, Over Forty, and Fertile.  

The pain seems to start off a little and in about 15 to 30 minutes my son is bent over and crying.  Do the systems seem like a gallbladder issue?  Are the test good at discoverying gallbladder problems?
Helpful - 0
Avatar universal
I would see another GI doc and make sure it is a dysmotility specialist or has some knowledge in dysmotility.  I have severe gastroparesis caused from surgical complications and am on Zofran for nausea, Prevacid and Zelnorm to make my stomach emtpy faster.  Let me tell you that your son is in pain and very uncomfortable.  the food does not move through the stomach and just sits there creating the nausea and gas and pain.  I end up in the ER quite frequently.  He can get relief though from the nausea medications.  

The good thing is that if it is post-viral it should get better and be completely gone within a year.  

I also find putting a hot water bottle on my stomach or even sitting in a warm bath tub seems to help.  Also walking (I know it is hard when you are in pain and discomfort) but this will move the food through the stomach faster and will relieve some of the symptoms.  

Good luck to you and your son.  I know how miserable I am most times and as a mother and grandmother my heart goes out to you and your son.  It is very hard to watch someone you love in pain.  There really is not much that can be done medically for this condition other than the above medications I mentioned.

Linda

Helpful - 0

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