Guest guest Posted March 23, 2005 Report Share Posted March 23, 2005 Hi all! I tried to post a couple of hours ago, but it hasn't appeared, so I apologize in advance if it ends up double posting. I just joined this group as my son is strongly suspected of having a mito disorder. I was wondering if there are any other children that have Infantile Spasms and was then diagnosed with a mito disorder. If so, what diagnosis did you receive. Alec has had seizures since the day he was brought home from the hospital after birth and was then diagnosed with IS at 1 month of age. We are currently waiting for results of a muscle biopsy taken at Mayo Clinic in rochester last week. You can reach me by posting on this board or through Alec's caring bridge site. www.caringbridge.org/sd/alec Thanks to all! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 29, 2005 Report Share Posted March 29, 2005 > , I know it has taken a while to respond to your post. My daughter andria started w/ seizures at 3 mons and was diagnosed w/ IS at 7 mons old. Our daughter has been on many combinations of AED's, the ketogenic diet and now a vagal nerve stimulator. She had spasms for about 4 mons after starting ACTH. Our daughter had her biopsy at 3 1/3 yo after multiple illnesses and complications from the ketogenic diet.Every child is so very different. Our daughter was diagnosed with a Complex 1 and a long chain fatty acid oxidation defect. If you have any questions feel free to e mail me lexicam24@... Heidi > > Date: 2005/03/23 Wed PM 06:48:35 EST > To: Mito > Subject: Child with IS > > Hi all! I tried to post a couple of hours ago, but it hasn't appeared, so I apologize in advance if it ends up double posting. I just joined this group as my son is strongly suspected of having a mito disorder. I was wondering if there are any other children that have Infantile Spasms and was then diagnosed with a mito disorder. If so, what diagnosis did you receive. Alec has had seizures since the day he was brought home from the hospital after birth and was then diagnosed with IS at 1 month of age. We are currently waiting for results of a muscle biopsy taken at Mayo Clinic in rochester last week. You can reach me by posting on this board or through Alec's caring bridge site. www.caringbridge.org/sd/alec Thanks to all! Please contact mito-owner with any problems or questions. Quote Link to comment Share on other sites More sharing options...
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