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My son, Xander, was diagnosed with BMD at 9 months via genetic testing. I am a confirmed carrier and my husband and I decided to have our own kids in spite of knowing there was a chance of having a son with BMD so when we had a son I took him in to be tested so we could be proactive in his care should he prove to have it. I enrolled him in preschool last year at age 3 and his teacher expressed some concerns so we got a referral to special ed and they determined he had some developmental delays. This year (age 4) he was enrolled 2 mornings at the special ed preschool where he gets OT, PT, speech therapy, and works with a special educator and 3 mornings at his regular preschool. At his last IEP meeting his team suggested taking Xander in to see a chil development specialist due to concerns with his language and social development which seemed to be affecting other areas of development (including fine and gross motor).
So, I took him in and now I'm sitting around waiting for our appointment for a 24-hou video EEG to rule out epilepsy before we get slapped with a mild autism pectrum disorder diagnosis. I'm going a bit stir crazy waiting for the beginning of April to get here so we can get the EEG over with and then I'll have another 3 weeks to wait after that for the results! In the meantime, I was wondering if there was anyone out there who has gone through this and had any extra information. The literature on MD and autism is pretty thin and, as usual, focused mostly on DMD. I did find one paper, but my school doesn't subscribe to the journal it's from so I haven't managed to get my hands on it, yet.
Thanks for lending your "ears" to my plight. Just typing it all out helps. :) |