RE: Newly diagnosed with focal (right) frontal lobe polymicrogyria = 36/7

[Guest guest]

Hi Antony,

I'm sorry I don't have any substantial answers for you, only support. Joshy is

our son, he is 9. Right now his biggest obstacle is sleeping sound. He wakes

up often, usually in cycles, 3 months ok sleep, 3 months no sleep...Seizures are

hard to identify but he's on Triliptol.

We've spent years trying to understand why, and there is no answer, just more

questions. Having people in your life who can love you and support you and help

remind you of your infinite potential, essential, this has been tremendous for

us.

Lots of love,

/Joshy

Sent from my iPad

Hi everyone.

Don't know where to begin. But, the last 3 years I have been collapsing, and

only found out in the last month or so, that this is my diagnosis, with

epilepsy.

My Keppra hasn't been helping and I've had an increase in seizures. For over 2

years my doctors thought I had a heart condition and I even had a Reveal device

(implant) for a year, until I had a housemate tell me I was having seizures in

my sleep - and then my neurologist didn't believe me. It has been hell.

I'm hoping that I might find some answers and ways to cope with my newly

diagnosed polymicrogyria/epilepsy.

I had problems when I was younger, but not really seizures. Anything people

could help me to figure out - what exactly I should be looking for in terms of

deficits or symptoms of polymicrogyria, to look at my life retrospectively -

would be helpful

Sincerely,

Antony

[Guest guest]

Dear Antony,

I'm so sorry you've been having such a hard time. The first thing I would

recommend is to find a great neurologist whom you trust. Not just a good

neurologist, a great one. One who is familiar with PMG and epilepsy. I think

it's absolutely unacceptable that your neurologist didn't immediately address

your concern that you were having seizures.

Where do you live? I'd be happy to ask our neurologist for a recommendation in

your area. This will make a world of difference to your care. Also, contact

your local chapter of the Epilepsy Foundation. Their website has a lot of

information about epilepsy as well as a forum that would be a great support for

you.

I wish you all the best, and if there's any way I can be of help, please don't

hesitate to email me directly.

>

> Hi everyone.

>

> Don't know where to begin. But, the last 3 years I have been collapsing, and

only found out in the last month or so, that this is my diagnosis, with

epilepsy.

>

> My Keppra hasn't been helping and I've had an increase in seizures. For over

2 years my doctors thought I had a heart condition and I even had a Reveal

device (implant) for a year, until I had a housemate tell me I was having

seizures in my sleep - and then my neurologist didn't believe me. It has been

hell.

>

> I'm hoping that I might find some answers and ways to cope with my newly

diagnosed polymicrogyria/epilepsy.

>

> I had problems when I was younger, but not really seizures. Anything people

could help me to figure out - what exactly I should be looking for in terms of

deficits or symptoms of polymicrogyria, to look at my life retrospectively -

would be helpful

>

> Sincerely,

>

> Antony

>

[Guest guest]

Hi Antony,

My name is Kami I'm a Mom of a very bright 11 year old (almost 12) boy, his name

is . has had some challenges with his learning like reading,

spelling and controlling his temper due to having a hard time getting what he is

thinking out into works to expressing to others what he is thinking but all is

all he is doing great. walks, talks, loves to watch learning video's,

swimming and Special Olympics basketball and baseball and so much more.

has not had a seizure in a while. was 7 years old when we got the

diagnoses of him having polymicrogyria before the diagnoses we thought

was autistic.

Know we are here to encourage you in your journey of life. If you have any

questions feel free to ask.

" The Lord bless you and keep you;

The Lord make His face shine upon

you, And be gracious to you;

The Lord lift up His countenance upon

you, And give you peace. "

numbers 6:24

________________________________

To: polymicrogyria

Sent: Thu, April 28, 2011 10:01:44 PM

Subject: Newly diagnosed with focal (right) frontal lobe

polymicrogyria = 36/7

Hi everyone.

Don't know where to begin. But, the last 3 years I have been collapsing, and

only found out in the last month or so, that this is my diagnosis, with

epilepsy.

My Keppra hasn't been helping and I've had an increase in seizures. For over 2

years my doctors thought I had a heart condition and I even had a Reveal device

(implant) for a year, until I had a housemate tell me I was having seizures in

my sleep - and then my neurologist didn't believe me. It has been hell.

I'm hoping that I might find some answers and ways to cope with my newly

diagnosed polymicrogyria/epilepsy.

I had problems when I was younger, but not really seizures. Anything people

could help me to figure out - what exactly I should be looking for in terms of

deficits or symptoms of polymicrogyria, to look at my life retrospectively -

would be helpful

Sincerely,

Antony

[Guest guest]

Antony, I agree you need a good neuro that has experience with malformations

and seizures. Dr Dobyns is the most well know to PMG I wonder if emailing him

could point you to a good doctor. Where do you live? PMG effects the flow of all

brain chemicals which then messes with moods, thoughts, focus, learning, and

sleeping. Have you had long EEG like at least 24hr? If you are having trouble

learning maybe a neuropsy eval could help you find how yor brain works?

Diane

Newly diagnosed with focal (right) frontal lobe

polymicrogyria = 36/7

Hi everyone.

Don't know where to begin. But, the last 3 years I have been collapsing, and

only found out in the last month or so, that this is my diagnosis, with

epilepsy.

My Keppra hasn't been helping and I've had an increase in seizures. For over 2

years my doctors thought I had a heart condition and I even had a Reveal device

(implant) for a year, until I had a housemate tell me I was having seizures in

my sleep - and then my neurologist didn't believe me. It has been hell.

I'm hoping that I might find some answers and ways to cope with my newly

diagnosed polymicrogyria/epilepsy.

I had problems when I was younger, but not really seizures. Anything people

could help me to figure out - what exactly I should be looking for in terms of

deficits or symptoms of polymicrogyria, to look at my life retrospectively -

would be helpful

Sincerely,

Antony

[Guest guest]

Hi All, and Diane,

I live in Edinburgh, Scotland. Originally from the US, near Seattle. I've lost

my job due to this disease, on disability, and only just learning about how it

is affecting, has affected, me throughout my life. Already finding your posts

helpful, thank you.

I've read that Dr Dobyns is in Seattle? Unfortunately, I don't have that kind

of money. Due to my situation here in Edinburgh, with my neurologist, I

returned to the US for a second opinion - it cost $250 out of pocket. He

recommended a second medication - Vampit, which he said would be $800 a month

without insurance! In the UK, albeit not having had the quickest or most

efficient of care, I don't have to pay anything. I'm trying to get a new

neurologist and medication here. In the process with the neurologist thing.

Yes, I had learning difficulties my whole life - remedial reading, speech

therapy for 7 years, hearing problems, repeating first grade, and a relentless

mother who wouldn't let me slack behind. I've just finished my MSc degree, and

wish to continue to possibly my Dr, or work. I speak 4-5 different languages,

have been a teacher, government work, and most recently a flight attendant for 5

years (until I collapsed on board). But, first thing is first - I need to sort

out my health. I've had a substantial increase in my seizures in the last 3

months - 10; whereas before treatment I was having one every 4 months or so -

granted it seemed more severe then (the seizures).

I don't know much about polymicrogyria, or how it affects other parts of the

brain - can you tell me more?

Thank you, again,

Antony R

>

> Antony, I agree you need a good neuro that has experience with malformations

and seizures. Dr Dobyns is the most well know to PMG I wonder if emailing him

could point you to a good doctor. Where do you live? PMG effects the flow of all

brain chemicals which then messes with moods, thoughts, focus, learning, and

sleeping. Have you had long EEG like at least 24hr? If you are having trouble

learning maybe a neuropsy eval could help you find how yor brain works?

> Diane

> Newly diagnosed with focal (right) frontal lobe

polymicrogyria = 36/7

>

> Hi everyone.

>

> Don't know where to begin. But, the last 3 years I have been collapsing, and

only found out in the last month or so, that this is my diagnosis, with

epilepsy.

>

> My Keppra hasn't been helping and I've had an increase in seizures. For over

2 years my doctors thought I had a heart condition and I even had a Reveal

device (implant) for a year, until I had a housemate tell me I was having

seizures in my sleep - and then my neurologist didn't believe me. It has been

hell.

>

> I'm hoping that I might find some answers and ways to cope with my newly

diagnosed polymicrogyria/epilepsy.

>

> I had problems when I was younger, but not really seizures. Anything people

could help me to figure out - what exactly I should be looking for in terms of

deficits or symptoms of polymicrogyria, to look at my life retrospectively -

would be helpful

>

> Sincerely,

>

> Antony

>

[Guest guest]

Hi Antony,

I am the mom of an almost 8 year old with PMG who is totally apraxic for speech,

has multiple learning disabilties, and started walking at 4. And she is also

funny, affectionate, and is very tenacious! I adore her. Our neuro is in NYC,

and is named Orrin Devinsky. He is at NYU. The doc who eventually diagnosed her

is from Poland, I believe, and is also at NYU, and is named Kuzniecky

(sp.??). They are both awesome docs! He told us, when our daughter's seizures

came back after 4 years of not having any, that the drug Lomictal is very " broad

spectrum " and that if HE had to go on anything for seizures that would be his

choice. Just wanted to pass that on...

And in terms of finding someone in the UK, the PMG/agenesis of the corpus

callosum world is a small one, and if you ask Dr. Dobyns or Dr. Devinsky I bet

you anything they would be able to find you someone near to where you live.

I also think a solid, detailed neuropsych eval would be a good idea. Better to

know what you are dealing with, right? (:

I don't at all want to minimize the ways in which your life, and your

newly-diagnosed disability, has been challenging, but as the parent of a PMG kid

I found it VERY heartening to hear that you had so much education, and have done

so well!

Many thanks for sharing your experiences with this list serve!

All the best,

Thea in NY

Newly diagnosed with focal (right) frontal lobe

polymicrogyria = 36/7

Hi everyone.

Don't know where to begin. But, the last 3 years I have been collapsing, and

only found out in the last month or so, that this is my diagnosis, with

epilepsy.

My Keppra hasn't been helping and I've had an increase in seizures. For over 2

years my doctors thought I had a heart condition and I even had a Reveal device

(implant) for a year, until I had a housemate tell me I was having seizures in

my sleep - and then my neurologist didn't believe me. It has been hell.

I'm hoping that I might find some answers and ways to cope with my newly

diagnosed polymicrogyria/epilepsy.

I had problems when I was younger, but not really seizures. Anything people

could help me to figure out - what exactly I should be looking for in terms of

deficits or symptoms of polymicrogyria, to look at my life retrospectively -

would be helpful

Sincerely,

Antony

------------------------------------

[Guest guest]

Hi ,

I would suggest you ask your neurologist to contact Dr la Pilz in

Cardiff. She used to work with Dr Dobyns and reviews MRI scans upon request.

However, I have to point out there is only so much they can see on a scan

and it generally helps if the consultant can see you in person. That said, I

think she is your best contact in the UK.

Annelies

Newly diagnosed with focal (right) frontal lobe

polymicrogyria = 36/7

Hi everyone.

Don't know where to begin. But, the last 3 years I have been collapsing, and

only found out in the last month or so, that this is my diagnosis, with

epilepsy.

My Keppra hasn't been helping and I've had an increase in seizures. For over

2

years my doctors thought I had a heart condition and I even had a Reveal

device

(implant) for a year, until I had a housemate tell me I was having seizures

in

my sleep - and then my neurologist didn't believe me. It has been hell.

I'm hoping that I might find some answers and ways to cope with my newly

diagnosed polymicrogyria/epilepsy.

I had problems when I was younger, but not really seizures. Anything people

could help me to figure out - what exactly I should be looking for in terms

of

deficits or symptoms of polymicrogyria, to look at my life retrospectively -

would be helpful

Sincerely,

Antony

------------------------------------

[Guest guest]

Annelies,

Thank you. Do I need to be referred through my Consultant, GP, other body? I'm

still learning about the NHS system here, and it has taken them 3 years to

figure this out about me thus far. Or, could I possibly travel to Cardiff and

make an appointment with her?

Also, do you know how I'd go about getting a neuropsych evaluation?

Sincerely,

Antony

>

> Hi ,

>

>

>

> I would suggest you ask your neurologist to contact Dr la Pilz in

> Cardiff. She used to work with Dr Dobyns and reviews MRI scans upon request.

>

>

> However, I have to point out there is only so much they can see on a scan

> and it generally helps if the consultant can see you in person. That said, I

> think she is your best contact in the UK.

>

> Annelies

>

>

>

>

>

>

>

> Newly diagnosed with focal (right) frontal lobe

>

> polymicrogyria = 36/7

>

> Hi everyone.

>

> Don't know where to begin. But, the last 3 years I have been collapsing, and

>

>

> only found out in the last month or so, that this is my diagnosis, with

>

> epilepsy.

>

> My Keppra hasn't been helping and I've had an increase in seizures. For over

> 2

>

> years my doctors thought I had a heart condition and I even had a Reveal

> device

>

> (implant) for a year, until I had a housemate tell me I was having seizures

> in

>

> my sleep - and then my neurologist didn't believe me. It has been hell.

>

> I'm hoping that I might find some answers and ways to cope with my newly

>

> diagnosed polymicrogyria/epilepsy.

>

> I had problems when I was younger, but not really seizures. Anything people

>

> could help me to figure out - what exactly I should be looking for in terms

> of

>

> deficits or symptoms of polymicrogyria, to look at my life retrospectively -

>

>

> would be helpful

>

> Sincerely,

>

> Antony

[Guest guest]

Hi ,

Your current consultant or GP should be able to contact Dr Pilz and refer

you. In my son's case the Geneticist from Guy's Hospital contacted her.

I do not know about the neuropsych evaluation, but your GP should be able to

help.

Annelies

Newly diagnosed with focal (right) frontal lobe

>

> polymicrogyria = 36/7

>

> Hi everyone.

>

> Don't know where to begin. But, the last 3 years I have been collapsing,

and

>

>

> only found out in the last month or so, that this is my diagnosis, with

>

> epilepsy.

>

> My Keppra hasn't been helping and I've had an increase in seizures. For

over

> 2

>

> years my doctors thought I had a heart condition and I even had a Reveal

> device

>

> (implant) for a year, until I had a housemate tell me I was having

seizures

> in

>

> my sleep - and then my neurologist didn't believe me. It has been hell.

>

> I'm hoping that I might find some answers and ways to cope with my newly

>

> diagnosed polymicrogyria/epilepsy.

>

> I had problems when I was younger, but not really seizures. Anything

people

>

> could help me to figure out - what exactly I should be looking for in

terms

> of

>

> deficits or symptoms of polymicrogyria, to look at my life retrospectively

-

>

>

> would be helpful

>

> Sincerely,

>

> Antony