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microcaphalic - anyone else!!!

8 replies

kaseysmum · 15/03/2006 12:09

Hi, i'm new to this site and have spent most of the last week reading all the posts. I was wondering if anyone is managing the same problem as myself. my wee boy is microcaphalic, as well as other things. at 2 months old it wasn't a problem, now at 27 months people are starting to ask questions, and although i don't mind taking the time to answer and explain his condition, i've never cane accross another child with thie same condition. don't know what the future holds for him - just taking things a day at a time - but none of the medical people can tell me what to expect, has anyone else been through this?

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FioFio · 15/03/2006 12:12

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kaseysmum · 15/03/2006 13:29

Hi fio, same here, didn't understand it at first - couldn't work out why he wasn't growing, although the paed consultant told me when he was eight weeks he was like this. his development has not progressed beyond the three month stage, although lately he has started to kick his legs. don't know if this is something 'he' is doing or his brain is doing for him. but when he finds something solid, your hand etc, he will stop and push against it. what i don't know is if his development is stopped, or just on a mega go slow

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FioFio · 15/03/2006 13:42

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dizzy34 · 15/03/2006 16:49

Hi my ds is nearly 3 and we were told that part of his condition meant that he would progressivly develop microceaphly and he has.His development has stopped at about 6 week old baby. He is blind, quadriplegic and has up to 100 seizures a day. He also cant eat or drink.

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Caroline5 · 15/03/2006 20:58

My dd2 has microcephaly and global developmental delay too, but no diagnosis. She will be 5 in May. Her development seems to be on a go-slow, on average she is probably at around 18 months - 2 years in developmental age, although less in her mobility. She is just beginning to pull up to stand and tries to climb onto things, she can walk about in her 'rollator', has no speech but has just started to wave. She goes to a great special school and seems to love it there. Are you getting much support from anyone?

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kaseysmum · 15/03/2006 21:41

Hi dizzy, your ds sounds about the same as mine. he's also blind, epeleptic, quadraplegic and has the feeding problems. recently had a gastrstomy so that encouraged a wee bit of growth, but thats stopped now, phyisically still looks like a 9-12 month old. don't know if this will change. I think the reason i'm worried is because years ago I did voluntary work at a local hospital where the patients were all phyisically or mentally handicapped. there were two patients there who although both in there thirties had never left the baby stage phyisically or mentally. it was sad to see. But i'm trying not to think about that too much and take one day at a time.

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kaseysmum · 15/03/2006 21:53

Hi caroline, we've recently started local nursery, 14hrs a week, which is great. gives me a wee break as well. ds is responding to lights and sounds, not turning but focussing and following to mid-line. i also get a support worker for a couple of hours three days a week. ds has phisio, o/t, visual impairment, speech therapy and his pre 5 teacher all on a weekly basis. everybody is doing the best for him at the moment, long may it continue.

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Caroline5 · 15/03/2006 21:58

Glad to hear that, I hope it all carries on for you too.

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