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Hello, I have a few questions I'm hoping someone on this board might be able to help me with.My DD is 11 months old as of yesterday. She was diagnosed with Mytopic Synostosis about a month ago. Her CT scan came back normal and negative for pressure on the brain. On Saturday, I took her in to see her pediatrician for a bad diaper rash. While Eve was on the table, she started rocking. She's been doing it for three weeks or so now. Mostly when we're in the rocker or she hears music, but sometimes just because.The doctor asked how long she'd been doing it and when I told her, she also asked if Eve is crawling or pulling up. I said no, she just rolls everywhere. So the doctor referred her for EI and then told me that we need to stop her rocking right away. She said there's a "syndrome" that involves an obsession with rocking. She wouldn't tell me any more about it. She just looked at the CT results and asked if Eve was sitting up on her own, which she's been doing for quite a while now, and said she's sure everything's fine.Well, now I'm not sure. Can anyone shed some light on this?
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Thanks Ani. The latest is that the ped wasn't concerned about autism, she was concerned about Angelman Syndrome. I spoke with the head of pediatrics a few minutes ago. She saw Eve two weeks ago for the flu and said she hadn't seen anything to indicate Angelman. We're doing a genetic test as part of the surgery prep for her synostosis. She said that it will rule Angelman out for sure, but in the meantime not to stress too much about it.I told her I'd do my best but I'd make no promises.
you're welcome nikki. I did a big project on Angelman Syndrome in college, although I don't remember a whole lot about it. I would try not to worry. If she has something, worrying won't take it away.I imagine (and pray) she is fine. I know how scary it is for doctor's to say something that stresses us out, though. My oldest son has Beta-hypothalasemia Minor, which means he's a carrier and he tends to be anemic pretty easily. Anyway, the doctor didn't explain all of that to me (him just being a carrier) and did exlain the effects of Hypothalasemia and it scared me! I changed doctors after that because he wanted me to put ds on iron, and I wasn't convinced he needed it. I'm glad I changed, because he didn't!
These threads are amazing. What are the odds of running into so many people who even know what it is? I sure had never heard of it.I think the doctor's main concern/reason for thinking Angelman's was that she saw Eve rocking and she's not crawling. I looked at the other symptoms though and I'm just not seeing it. Eve is very vocal and while she's a good baby, she's not laughing all the time or anything like that. She's blonde, but it's not abnormal. She has the same coloring as her bdad. She does put everything in her mouth but she's 11 months old. That sort of comes with the territory. She may not be crawling but she barrely rolls like a pro.... I guess there's only so much worrying we can do. But I'll definitely be happy when those genetic tests are done.
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