Schizencephaly...any experience?

[CheerfulYank]

So, my subject line basically says it all, but I was just wondering if anyone has any knowledge of or experience with kids with schizencephaly.

There are a couple of children at dd's support group with this.

Oh, ok. The reason I'm wondering is that I'd never heard of it before, but I know of a little guy up for adoption who has it. DH adn I aren't ready to adopt yet (still have to go through homestudy and all of that), but I was just curious. I did a bit of research and it seems that depending on the severity of the condition the kids can be anywhere from profoundly disabled to pretty much "normal". (Whatever that is, eh?)

thats pretty much it. Mild to severe. I imagine there's people out there with it and no symptoms at all.
The two kids in dd's group - one has moderate delay and seizures. Normal physical development, the other is hypotonic so has difficult with movement but seems 'normal' cognitvely. No idea if he has seizures though.
Bit like CP, normal to severe and you cant tell early on.
How's he doing now? Do you know that?

I'm not sure; they don't really give you much info unless you're homestudied. I do know that he's showing developmental delays in all areas, but he's not even 2 yet so who knows how it will all come out.

There's just something about him though...I want to scoop him up and take him home and I've only seen his picture!

awwwwwwwwwwwww. hope it goes quickly

Well, we're in the middle of renovations on our house at the moment so that will have to be done before we can be homestudied. And then I will have to convince DH that we're ready for another DC. (He has some -perhaps not unfounded- financial issues with it.) I would love for this little boy to come be ours, but for his sake I hope that by the time we're ready to adopt he'll have found his home already. Who knows, though, maybe he's meant to be ours and will still be waiting?

I have a 4 yr old boy wth Schizencephaly. He is doing fantastic and most ppl don't even notice that there is anything different about him. It was a difficult first couple of years tho until w knew how severe it wa gong to be. We were lucky.

Hi, I have a 2 1/2 yr old boy with schizencephaly. Id agree with what the others have said. you just dont know how things will turn out.
According to the MRI the proffessionals said DS shoud be severe quadraplegic but hes doing ok, presents right hemiplegic, language and speech delay but hes just a very happy, social little boy, but he just started having seizure this wkend, on meds now so just got to take it from here. I remain hopeful but at times its hard to stay positive given the outlook we get told. Wouldnt change him for the world.
Sorry to hijack but miraclebaby- how long has ur ds had dx for? how does he present, would love to speak to you as its soooo rare its hard to get the opinion of other parents