DD had her MRI today

[wrinklytum]

Her brain is "smooth" and has not developed properly.Felt to be genetic-lissencephaly???Anyone in a similar position?

how old is your LO?

I dont have any experience with this, but im sure someone who does will be along soon. {hugs}

just had a quick read on wikipedia, how are you doing? were you expecting this diagnosis? huge huge {{HUGS}} XXX

Hi Wrinkly tum - I'm pleased you have some answers, just sorry I don't know more about her condition. I'm sure you will be googling it all night now and driving yourself insane - I know I did when dd was diagnosed with PVL, a type of brain damage that caused her CP. Am I right in thinking that your dd has CP type symptoms? I know you've been waiting an age to get a diagnosis. Thinking of you and hoping your dd is able to get the treatment she needs now she has a diagnosis.

Have you looking at 'contact a family' ? they might have someone you can get in touch with.

Also not sure if the link will work but there is a yahoo group for parents here: health.groups.yahoo.com/group/lissencephaly/?v=1&t=search&ch=web&pub=groups&sec=group&slk=1

Thank you both.dd is crashed out in bed sleeping off the MRI bless her.

PMSL at myself-sleeping off MRI,i MEAN SLEEPING OFF SEDATION!!!THANKS,RIVEN XX

Hi Wrinklytum,

My dd has/ had suspected polymicrogyria (one team of experts thoought she had, another team at GOSH didn't think she had from the scan results - confusing!). I belong to the Lissencephaly Support Group here (covers polymicrogyria) - they provide newsletters and contact with other families.

Lissencephaly Contact Group

I joined when the debate was underway between the neurologists and radiologists...these days I've accepted that she still has no dx. She's had every genetic test under the sun with no positive results.

Hope you and dd are OK - I'm not one for hugs but.... (feel free to CAT me if you want).

Hi wrinklytum, I posted on your other thread, about the MRI. How's DD this morning?

I don't have experience of this (dd1 had brain haemorrhage at birth, CP etc followed this) but am just writing to say hi and I hope your dd had a good sleep, and I hope you are Ok x

Hi wrinklytum. Dd3 has a neuronal migration defect and part of her brain hasn't folded properly either. Hers is genetic but not lissencephaly, she has hypomelanosis of Ito. We weren't expecting to hear her mri was normal but it still hit us very hard to hear how much of her brain had not formed properly. Hoping you're all ok today. Join the support groups, it really does help.

Thanks ladies.

I was pretty much expecting bad news given her delays,was ok until it came to witnessing her struggling to come round from sedation etc then being told.Thanks for all the advice.She is still my beautiful little girl,with her engaging personality-she is VERY determined and her beautiful smile and cuddles.