My son was born with a complex congenital heart disease (Tetralogy of Fallot with pulmonary atresia (missing pulmonary artery/valve), large vsd, multiple aorticopulmonary collateral arteries, aortic insufficiency, aortic aneurism). He was corrected with a series of five surgeries, four of them in the first five years of his life. HIs heart caused him to have over 40 hospitalizations. He had surgery number five in 2003 at age 13. A year later he started have strange neurological symptoms, but they were just written off as nothing. Another year later and he woke up blind in one eye. Due to his cardiac history it was thought he had an embolism in his retinal artery. He began high does blood thinners while in the hospital(heperin, coumadin, aspirin), and after six days, a hyperberic chamber, multiple eye exams (including a retinal specialist), two MRIs and a spinal tap it was decided that he had optic neuritis due to probabal multiple sclerosis. He was started on 1000 mg of soluemdrol daily by IV, and then after five days was on a taper for about a month. After finishing this course it was decided that he was still having an exacerbation, and he began the same treatment. He was then officially diagnosed with MS and began on Rebif injections three times a week. He is now 15 and has been dealing with the MS for nine months. He is such a great kid with a super positive personality. Depression does not seem to be an issue with him, though he can have some mood swings, but rarely.
I do have a question: He has had a few cbc reports that indicate he has microcytosis (small red blood cells). I know this can be associated with anemia, but I wonder if it can have other possible causes, like the heart disease or MS. I sure hope he does not have some sort of blood disease. my other son has ITP, a platelet distruction disorder.
You can see Josiah's heart page at http://www.geocities.com/momoffyve
Its been a while since I've added to the main pages, i lost the password and can't access it, but there is a link to the update pages if you want to see his pic.
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