Re: Surgery - UK based - any help welcome

[Guest guest]

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]

Hi Stacey - wondering who you guys are seeing and if you'll need anything

while you're in the area.

Hoping you have a safe trip and good news.

(mom to 5)

>

>

> 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]

Dear Katy and all,

I understand that Harvard is doing some clinical trials in children

using magnets for treatment of refractory seizures through their Center

for Brain Science. I believe they are done out of Beth Israel hospital

in Boston. The Epilespy Foundation also has a website and I believe

they have clinical trial information for seizures. Clinical trials are

one way to go if the traditional routes don't work.

The best of luck to you,

(mom of Eva, 7, right unilateral PMG)

> Hi Stacey - wondering who you guys are seeing and if you'll need anything

> while you're in the area.

>

> Hoping you have a safe trip and good news.

>

>

> (mom to 5)

>

> On Fri, Mar 18, 2011 at 4:27 PM, Stacey Klim wrote:

>

>>

>> 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]

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

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 Katy,

We are in the UK, West London based. was diagnosed at 16 weeks - he is

9 this year. We tried everything and eventually he had surgery at Great

Ormond Street Hospital when he was 6 - I wish to God we had had the surgery

earlier! For us it took at least 2 years from surgical referral to actual

op. Go for it, find out all you can and try not to be scared by the idea -

technology is amazing these days - no-one is going to operate on your

daughter unless they are pretty sure it will help. Feel free to contact me

directly, more than happy to chat on the phone if you think that might be

helpful.

With every best wish

PS - to the best of our knowledge - barring the occasional possible absence

is now seizure-free (touch wood, fingers crossed, say a little prayer

etc etc etc)

From: polymicrogyria [mailto:polymicrogyria ]

On Behalf Of kswinster

Sent: 18 March 2011 21:47

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]

Katy,

We are in the U.S.  My daughter is 14 years old.  Her EEG suddenly went

completely abnormal in December of 2009 - she went in for a routine check and

they found out that she was in " sub-clinical status " .  Since then we have been

going to different hospitals and surgeons.  We just completed our surgical

evaluation with the Cleveland Clinic.  We are meeting with the surgeon and

neurologist on April 15 to go over the details.  For her they are recommending

" disconnecting " the entire left hemisphere.  She does not have nearly the

number of clinical seizures that your child is experiencing.

The neurologist that we settled on said to me " the risks of brain surgery are

much less than a lifetime of uncontrolled epilepsy " .  That kind of helped me to

see that this is NOT going to end.  At 14 my daughter is thinking about dating

(Aaaahhhhhhhh!!!), driving a car, etc. She is a very high functioning PMG kid.

 We have been to 3 hospitals - all of them recommended brain surgery.  She has

failed Phenobarbital (as an infant), Keppra, and 4 other drugs.  Nothing breaks

up the activity in her brain.

The younger you do the surgery the better it is for your child to recover.  I

know that sounds horrible, but the brain can do amazing things.  Have you seen

Rep. Giffords?  She was shot in the head - a perfectly healthy brain - and is

starting to walk and talk.  She was in her 40s (I think), and it has been 5

months.  That was pretty powerful for me to watch.  Think of how elastic our

children's brain are.

I don't know if any of this babbling has helped.  But, we are making the same

decision as you are.  We haven't made it yet, because we haven't had the sit

down yet.  It's a very hard choice, take your time.  Breathe, and remember

that forever is forever for your child.

R. Holman

PADI OWSI #193832

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

To: polymicrogyria

Date: Sunday, March 20, 2011, 6:41 AM

 

Hi Katy,

We are in the UK, West London based. was diagnosed at 16 weeks - he is

9 this year. We tried everything and eventually he had surgery at Great

Ormond Street Hospital when he was 6 - I wish to God we had had the surgery

earlier! For us it took at least 2 years from surgical referral to actual

op. Go for it, find out all you can and try not to be scared by the idea -

technology is amazing these days - no-one is going to operate on your

daughter unless they are pretty sure it will help. Feel free to contact me

directly, more than happy to chat on the phone if you think that might be

helpful.

With every best wish

PS - to the best of our knowledge - barring the occasional possible absence

is now seizure-free (touch wood, fingers crossed, say a little prayer

etc etc etc)

From: polymicrogyria [mailto:polymicrogyria ]

On Behalf Of kswinster

Sent: 18 March 2011 21:47

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]

Thanks for your advice Donna. I'm going to contact our nerologist on Monday to

discuss some of these options with him.

Whether any of it works or not you've helped me feel more positive. Sometimes

i'd just like to look into a crystal ball and see our future - if only :-)

Thank you

Katy

>

> 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

I am so pleased you replied to my message. After everybodies advice i've a few

questions to ask the neurologists about the keto diet and keppra. Things feel

bitter sweat at the moment. I sort of knew when we were disacharged back in

december that we would end up on the surgery route. All the consultants

mentioned it at each visit. I just hoped and prayed one of the drugs would work.

But hey were here and the sweater part is that our neurologist seems to be

really on the ball. he's called Dr Ferrie. he diagnosed Jenna when she went in

as an emergency and came in on a Sunday off to get her into an MRI and then ICU

so i feel like we're in safe hands.

I'll apologise now because I have a few questions if that's ok..

If you don't mind me asking how did you get to the surgery assessment? Did you

push for it or did they recommend it? Who's your neurologist / surgen? Where was

the PMG site? Does see other specialists?

Gosh i could keep going but i'll stop for now. All our love and best to you,

and your family.

Katy and Jenna x

>

> Hi Katy,

>

> We are in the UK, West London based. was diagnosed at 16 weeks - he is

> 9 this year. We tried everything and eventually he had surgery at Great

> Ormond Street Hospital when he was 6 - I wish to God we had had the surgery

> earlier! For us it took at least 2 years from surgical referral to actual

> op. Go for it, find out all you can and try not to be scared by the idea -

> technology is amazing these days - no-one is going to operate on your

> daughter unless they are pretty sure it will help. Feel free to contact me

> directly, more than happy to chat on the phone if you think that might be

> helpful.

>

> With every best wish

>

>

>

> PS - to the best of our knowledge - barring the occasional possible absence

> is now seizure-free (touch wood, fingers crossed, say a little prayer

> etc etc etc)

>

>

>

> From: polymicrogyria [mailto:polymicrogyria ]

> On Behalf Of kswinster

> Sent: 18 March 2011 21:47

> To: polymicrogyria

> 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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