Surgery - UK based - any help welcome

March 18, 2011

Hi everyone.

I'm sorry if I'm asking questions that others have asked before. I've had a read

through previous posts and have found some really useful info.

My daughter is 6 months and has PMG. We're based in Leeds in the UK and have a

good team of neurologists. Jenna was admitted at 7 weeks for 4 weeks and has

been seen weekly/monthly since.

The neuros believe she has focal PMG on the occtipical and parietal lobes (back

right) of her brain. We had one eeg showing adnormal activity starting in

multiple places and two (one this week) showing the activity starting in the PMG

site. Because she was scanned so young there are some question marks over if she

has other abonrmalities/ So having the eeg supporting the arguement for one side

was positive.

The neruo we met today was the one who diagnosed jenna at 7 weeks. he's really

on the ball and keen to get things moving. on the last visit i went armed with a

list of questions. Today it was simply what else do we try. i had nothing else

to ask. I even got worried on the way there because i had nothing to ask (stupid

i know). Jenna has approx 25 seizures a day (IS - suspected focal complex

partial) and a number of absense i don;t even count. We've tried topomax,

vigabtrin, phenobarbitone, clobazam and steriods. He suggested starting Jenna on

a surgery assessment today and booked us in for a video eeg on monday. what do i

think about this??? i don't know. i wish and wish there was another way, a drug

that would help. But in my heart i sort of knew months ago we may end up here.

We now have 3 options

1 - she responds to the final increase of topomax and clobazam or another drug

combination works. in the neuro's option this is v unlikely

2 - she is a candiated for suregry and it works / doesn't

3 - she isn't a candidate and we keep on the drugs and she possibly lives the

rest of her life having 25+ seizures a day.

Not sure what to think. If anybody can offer any advice or let me know their

experience i would be really grateful.

Thank you

Katy x

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