Re: Digest Number 3842

March 26, 2011

Firstly thank you all for your advice and sharing your experiences. We've been

tied up with apps this week so haven't had the chance to send full replies.

Hopefully when little miss settles tonight I will. :-)

Teri you sound very adamant can I ask why? Our neuros mentioned the diet months

ago when Jenna was 4months. But they say because of the number each day her

needs are urgent. I'm guessing maybe she's too young? Do you know if there's an

age limit? I know where we are the urgent waiting list is 6months? (Pretty much

the same as everything else).

Thanks :-)

Sent from my BlackBerry® wireless device

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

March 26, 2011

Hi teri. Would love to call but i'm in the UK and it may be a small fortune.

I'll wait until you have the chance to reply if that's ok. Going to call the

neurologist on Monday to discuss some things with him.

Thanks

Katy

>

> 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

>

March 26, 2011

Hi all,

I have been following he posts regarding surgery and wanted to offer our

experience. When my son was 8 seizures were so bad he couldn't eat without

gagging and lost 50 pounds. Drs 'weren't posiive about surgery but felt that

was the only option to save his life. When he entered the hospital for the WADA

test and other last minute testing for whatever reason seizures slowed down -

when the neuropsychological exam came back it showed that what they wanted to

remove was functioning better than what they were going to leave in so we opted

for the VNS instead. I won't say its been perfect - in 6 years he is now on

his 3rd battery which we can't really figure out and have been told it is odd by

drs too, but in the last year or so our son has had a huge change. When he was

8 and having all the problems his IQ dropped from 88 to 55 - a huge decline -

that stayed consistent for many years then in the last year or so he came back -

seizures still happen, but they don't affect him like they did - I think the

spiking has slowed. He is in regular education classes and doing well - he can

remember what is going on and we have hope again. He is taking vimpat which I

think helped also. The last time the battery died he went from being on grade

level for reading to 5 years lower (1st grade) within 2 months so we are scared

as he is about this next battery change, but we do know that he has the ability

if the seizures can be stopped. In the first years following the initial VNS

implant the dr continued to sugest surgery. We were told he would lose the

ability to speak - he did for about 3 months - even had a communication device,

but it returned. Every time the drs would bring up surgery they wanted to

remove somthing different so his cognition would improve. We are so thank ful

we didn't - I don't want to say that is the answer for everyone. I work for a

school district with several children that I have seen benefit from surgery for

seizure disorders, but in our case I don't believe it would be the best

decision. It is extremely difficult though and I will say we do from time to

time question our decision - even our son at one point was mad at us for not

doing it, but at this moment life is good and believe me even if the battery

dies and things don't return - I wouldn't give up this time for him or for us

for anything - he is a happy, typical functioning teen.

Joanne