Polymicrogyria - does anyone else out there have any experience of this?

[Adelaide]

I've just emerged from a month in hospital with my (now) 18 week old baby. He started fitting and to cut a long story short we have been informed he has a rare neurological disorder called polymicrogyria. It is really hard to find any information on this and the only website we can find is full of caring, sharing americans and I don't think I'm quite ready for that yet. I am feeling totally washed out - emotionally and physically and just want to curl up in bed and sleep forever. However, with two others (2&4) who have deperately missed their mummy this is impossible. Anyway too tired to even think - any help/advice very gratefully accepted.

Would this be any help?

Or here even.

This could be useful too. Hope they help, I haven't really read through them.

www.nhs.uk/rarediseases/

They may be able to put you in contact with patients and their families in the UK.

Dear Lou
Will have a look, very many thanks for your help/suport.
Adelaide

Hi Adelaide. Sorry to hear about this- must be horrible. There's a small amount of info on polymicrogyria here. You could call the Contact a Family helpline on 0808 808 3555(10am-4pm, Mon-Fri) for more information. HTH.