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Sunday, June 26, 2016
My daugther is almost 13. No signs of puberty. She fell off her growth curve. She is not growing well in height. Everyone in her school has outgrown her a head and shoulders. Since she was a baby she has been diagnosed with pneumonia, bacterial menengitis, cat scratch disease, mono, CMV, asthma, and she has 4 to 6 strep infections a year. We have been to dr after dr. The last blood work she had showed a really high c-reactive protein, igg glutens 3 to 4 times what they should have been, a high white cell count, high blood alk phos, peripheral smear showed leukocytosis. Her symptoms are lathargy, swollen lymp node in the neck, fatigue, nosebleeds, rashes in no specific place, canker sores inside the lip, failing to grow normally, muscle aches(occassionally), and dry constant cough. Family history lupus, crohns, and my other daughter has cystic fibrosis as well as my neice. The child I am referring to here has tested negative on the sweat test twice and they assure me there is no reason to test her by blood.(??) She was sent to a gastro who did an endo and a colonoscopy. There was significant inflammation in the lower colon. There was significant inflammation in her stomach and duodenum with ulcers, yet she tested negative for crohns, celiac, and milk allergy. He now wants to do the camera pill test. WHAT DO WE DO NEXT? I think she has had enough with the medical testing. Isn`t there enough here now to put together some kind of profile so that she can be treated and get better? Where do we go to get help and get it soon? Is there some sort of medical test they have overlooked doing? We are at a loss!
Unfortunately, without the ability to conduct further tests, it is unlikely that you will have an answer. I would discuss your concerns with all the various specialists involved in what is called a team meeting and work on a coherent plan for understanding what is going on with her.
Michael Spigarelli, MD, PhD
Formerly, Associate Professor of Pediatrics and Internal Medicine
College of Medicine
University of Cincinnati