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Re: [nomidsyndrome] Our Little Boy
Dear Karen, Our son Zachary, who is 19 years old was diagnosed with CINCA when he was 9 years. He had all the classic symptoms that are described in this particular syndrome, but 19 years ago, very few Doctors were aware that this disease even existed. He was in fetal distressed and was taken by c-section 1 week early. Thirty to forty-five minutes after birth he developed a rash that covered his entire body. Our doctors here in St.Louis.Mo. did extensive testing, even a brain biopsy. Basically, they knew he had a vasculitis of unknown origin. They knew it was a auto immune disease and back then it really did not matter if it had a name, there was no treatment except suppressing his entire immune system. Placing a VP shunt at an early age probably prevented any significant brain damage. His stroke at age 2 shocked everyone. After that whenever he begins to really flare they don't mess around and increase his steroid dose. Unfortunately, he has severe osteoporosis from it, so we are anxiously awaiting our trip next week to the NIH. He has also lost some hearing and vision function. As far as siblings, he has an older sister who is 23 and a brother who is 22 and they are very bright and healthy. If I can help you with any other questions, please feel free to e-mail me at any time. Take care and
my prayers are with you.
Jan
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