August 21, 2011
cyclic vomiting syndrome?
well, dr. said we will probably be here till at least wednesday and thats if all goes well, if it don't go well it will be longer. They are still tossing around ideas of whats going on. One idea is that he has Cyclic Vomiting Syndrome. They are also tossing around the idea of sending us somewhere else. Not Mayo but another specialist peds place. Out of state.
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Cyclical Vomiting sounds like Eosinophilic Gastroenteritis or Esophagitis and the best hospitals for these diseases are Cinncinati Children's ( Dr Putnam is the GI and Dr Rothenberg is the immunologist) and Mt Sinai Children's in NYC (Dr. Schicher is immunllogist). Look up APFED.org for thorough explanations of symptoms. The malabsorption that this causes would result in developmental delays because the child isn't getting proper nutrition for growth. Have the Dr's tested for Celiac Disease. Also caused extreme malabsorption and hard to diagnose. Motility Disorders and Mitochondrial Diseases come to mind also.
ReplyDeleteMy 16 yo son had to go through much pain & suffering before he was given diagnoses. I took him to many Dr's also and didn't get any answers until he was 8 yo. That was the beginning of a difficult medical journey. I hope you find answers soon. We take him now to A. I. duPont Children's Hospital in Wilmington, DE. It is part of the Nemours Foundation. A truly family-centered facility.
Cynthia Knight-New Jersey