Just received diagnosis of PMG (generalised)

[Guest guest]

Hello,

I'd really appreciate if someone further along this road could offer some advice

or an idea of what to expect.

We are in Ireland and my daughter (nearly 3) received a diagnosis of PMG

(generalised) on Wednesday. Before this she was being monitored for

hydrocephalus but does not have a shunt. She has some development delays and low

muscle tone but really, the average person would never guess. She was slow to

speak but in the past two months she has begun to use simple sentences.

Over the past year she was beginning to vomit without warning and then fall into

a deep sleep immediately after. A pattern developed and I took her to the doctor

thinking her CSF pressure had increased and maybe she did need a shunt. After a

series of scans and blood tests we were told that she has PMG and there is no

doubt whatsoever.

do you think the vomit and sleep pattern was the beginning of slight seizures? I

was in such shock when we got the news I didn;t really ask any questions (had

never heard of polymicrogyria until thress days ago) and now I have questions

and no one to ask. We're not sue to see the neurologist again until February (or

when she gets her first seizure - which ever comes first).

What can I expect? She is a beautiful, fun loving girl and really I can't stop

thinking that they've made a mistake.

I'd appreciate any help you can offer - I'm afraid to google because all I can

see is medical terms and worst case scenarios. I really want to hear another

parent's point of view.

Many thanks