RE: Surgery - UK based - any help welcome

[Guest guest]

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 ]

On Behalf Of kswinster

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

To: polymicrogyria

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

[Guest guest]

Grandma to Dakota - FIRST and FOREMST, TRY THE DIET!!!!

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

To: polymicrogyria

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 ]

On Behalf Of kswinster

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

To: polymicrogyria

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

[Guest guest]

Hi Stacey

Thanks for letting me know what you're going through. I've read your blog and

it's truly inspirational. You are so honest and articulate. I subscribe to a

magazine by Epilepsy Action (it's a chiarty over here) in it they've just

started following a family who are going through the same things as us.

How did the trip go? have you had any results as yet? I pray and cross all

fingers and toes that you get the results you want.

Our video EEG was supposed to be a few days but because Jenna fits so often they

had enough after one morning. I was so pleased to be home in the afternoon :-)

All my best to you and your family.

Katy and Jenna xx

>

> Hi Katy!  Your story is very familiar to ours right now.  We leave this

weekend

> to go to Seattle for a video EEG.  My son is going to be 3 next month

> and has unilateral right side PMG.  A year ago he had a video EEG here in our

> town (Spokane, WA) and it was a good thing.  We discovered he was having

> myoclonic seizures and he was on the wrong medication to treat them.  We

> switched medications and things were a little better.  Now we are back to

having

> that medication (Topomax/Topiramate) not working.  Our neurologist presented

> 's case to some epilepsy specialists over in Seattle so now we will go

> over there for another video EEG, PET scan and a more detailed MRI. Our

options

> at this point are similar to yours.  We are hoping to get more information

next

> week and see if surgery is an option, or if we need to change meds and learn

to

> live with the seizures.  It is good to get the video EEG, it gives the

doctors

> more information on how to treat.  It is a pain having your child attached

for a

> long period of time, but it is worth it.  The more information we can get

about

> our kids the better.  Hang in there! 

>

> I have a blog about if you are interested.  It is at:

> http://lifeonmysterylane.blogspot.com/   I will put a post up about our test

> results and experience when we get home. 

>

>

> Stacey

>

>

>

>

> ________________________________

>

> To: polymicrogyria

> Sent: Fri, March 18, 2011 2:47:27 PM

> 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

>

>

>

>

>

>

>

>

[Guest guest]

Thanks Diane. After a mad week i've managed to get back online. Will check the

site out this w'end. I'm also going to speak to our neurologist about Keppra

next week.

Take care

Katy and Jenna xx

>

>

> I did some research about hemispherectomy and I found an nice support group

http://hemifoundation.intuitwebsites.com/ then we found Keppra that seems to

work for now.Diane

>

> To: polymicrogyria

> From: kswinster@...

> Date: Fri, 18 Mar 2011 21:47:27 +0000

> Subject: Surgery - UK based - any help welcome

>

>

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> 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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