MRI Results - Schizencephaly, does anyone have any knowledge?

[fnm]

Hello everyone, not posted on here for a while but was wondering if anyone has got any advice/experiences re the title?

Basically DS who is now 20 months was diagnosed with mild right side hemiplegia back in June. He has been referred for loads of therapy, ot, physio, speach, hydro all of which we are still waiting for dates to start.

The hemiplegia affects his whole right side, He does present quite mildly, he can walk but with a slight limp, only uses his right hand to support object but doesnt really 'use' it. He dribbles quite a lot due to facial weakness and can only say about 4 full words (hi, bye, car, yeah).

Anyhow last wk we recieved his mri results, Schizencephaly, we have been told he has a large open cleft on the left frontal lobe going over to the right. The paed said its a hell of a lot of damage but as he presents well she is hopefull for him. She emphasised on seziures as its very common with this kind of insult however he hasnt yet had a fit so i guess its still the wait and see approach, much like everything else that comes along with hemi.

Would love to hear from anyone who has any experience or knowledge on this subject.
We have requsted a copy of the written report so we can try and learn more about ds condition, we are also considering requesting a copy of the mri scan pics, does anyone know if we are allowed to view these and how we go about obtaining a copy?

Thanks for reading

[feelingbetter]

Sorry no experience, but have read your threads and glad you've got some answers.

MRI scans - yes you can see them. Am surprised you weren't shown them when discussing the results. They are kept on computer these days, so I can't see any problem with you requesting to see them. If you want a copy to keep, I've never asked but I'm assuming you'd start with paed's secretary. I have asked for copies of reports from various consultants and always start with their secretary, who without fail so far, has sorted it all out.

Good luck, very glad your DS is doing so well and hope it continues x

[fnm]

Thanks, I will start with the paeds sec then. It was the paed who gave us the results but she did mention she hadnt seen the scan pics herself. The consultant nurologist (who we have never met) sent the written report to her.

Is there any reason they can refuse us seeing them? just have a feeling the paed will think its not neccesary iykwim, when i asked for a copy of the written report she paused for a while and said yes ok, cant see any reason why you cant have a copy.

Thanks again

[feelingbetter]

I think its more coz its probably written in a very stark, matter-of-fact type way - more for Dr to Dr and not dressed up at all or 'put nicely' (IYKWIM) for the parent/patient.

'Spect she's worried that you may be upset by the tone of a report that wasn't specifically written for you.

Seeing things written down in black and white is hard and I do find it upsetting, but I am a need to know person and worry more about what I am not being told, rather than what I know. Probably why I'm such a nuisance asking for the reports all the time

[feelingbetter]

P.S. I also demand to see x-rays - am never convinced a chest infection is better till I see it myself

[ohmeohmy]

not sure about your hospital but we have had copies of MRIs from Gt ormond Street- had to pay £20 I think it was and got them on disk.

[fnm]

Thanks for the replies, i will wait for a copy of the written repot to come through then ill ask for the scan pics.
I dont mind paying for them, feeling better - im definatly like that and i also need to know Everything!!!, although sometimes too much knowledge is worse than no knowlegde (iykwim) but im a big girl now so i can take it .
As for the schizencephaly, i have read that its very rare(i have also posted on another site) but have had no replies from anyone about it, so i guess it is a very rare condition.

Thanks again

[r3dh3d]

There seems to be a yahoo group for it.

DD1 has hemimegalencephaly (another brain dev disorder rare enough that there is no UK support group) though tbh as she is - sod's law - a bit of an unusual case, it's not been all that much use to us joining the yahoo group.

[MavisEnderby]

Dd has lissencephaly,a brain malformation.I think when I googled hers there was some mention of schizencephaly (Tho very diff).I think if you googled there would prob be a support group for rare diseases such as this

[shut0607]

Hi. Just wonder if anyone can give me some advice about schizencephaly. My nephew has it and I am trying to help, but not sure how. any advice will help.
One more thing, for this condition are the services better in London than any other area in England?
I am asking because they want to move to London and not sure if they will get as much support there.
Many thanks