Re: Digest Number 3842

[Guest guest]

I dont have time to type right now but you can call me at if you

like.  I may not have time to get back on her for a day or so.

From: Donna <donnasc4@... <mailto:donnasc4%40cox.net> >

Subject: RE: Surgery - UK based - any help welcome

To: polymicrogyria <mailto:polymicrogyria%40yahoogroups.com>

Date: Monday, March 21, 2011, 11:16 AM

 

We tried to see if our son would be a surgerical candidate, but he wasn't

because he had multiple focal spots.

Clobazam was the only med and believe me we have tried 12 or more different

kinds, was the one that would stop the seizures but made him have major

behavioral issues which we couldn't handle so off he went and seizures came

back. L We were soooo close.

We even tried the VNS implant. That was good. We could wave the magnet

across the implant and it would stop or shorten the seizures. Problem was

that it malfunctioned somehow (which I heard rarely happens) so we decided

to take it out instead of implanting a new one.

My hopes are that one day, we will gain 100% control.

It's been 15 yrs of living with seizures and I try to stay positive.

Look into the VNS implant. Another option besides surgery and drugs.

Check into the KETO diet, also since she is so young.

The younger the child, the easier to try the KETO diet.

It I had to do all over again, I'd try diet first before meds, meds if they

would work, then move onto more invasive type things like the VNS and last

resort surgery.

Take care,

Donna (mom to Trevor, 15 yrs old bilateral moderate PMG and other stuff)

USA

From: polymicrogyria <mailto:polymicrogyria%40yahoogroups.com> 

[mailto:polymicrogyria <mailto:polymicrogyria%40yahoogroups.com>

]

On Behalf Of kswinster

Sent: Friday, March 18, 2011 5:47 PM

To: polymicrogyria <mailto:polymicrogyria%40yahoogroups.com>

Subject: Surgery - UK based - any help welcome

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