Re: I need some input, please!

[Guest guest]

,

I think and Dianna's posts touch on something that I have wondered

about. They have children have PMG but low frequency of seizures. It sounds

like their doctors expected their children to be worse off based on the extent

of PMG. However, the PMG their children have does not seem to be causing the

bad seizures that often accompany the condition. I often wonder, what plays the

bigger role here, the PMG itself or the epilepsy it can cause.

My step daughter has unilateral PMG along one side of the hemispheric fissure

(only a small area of the brain is involved), yet she is severely mentally

retarded. So why is my step daughter so much worse off? My, uneducated, theory

is; because her PMG caused her to have a catastrophic seizure disorder (Lennox

Gastaut syndrome) which is progressive. Bear in mind, my step daughter was not

always severely affected. She was born with PMG but only slightly delayed. Her

decline in skills didn't start until the Infantile spasms evolved into LGS. I

don't feel her condition worsen because of PMG, it was because of the LGS it

caused.

I would love to see someone do a study that investigates the outcome of PMG

based on the seizure disorders it causes (or doesn't cause) as opposed to what

region or percentage of the brain is affected.

jenrific wrote:

I don't post all that often on here, but do find time to read

through most of the new posts. My son, , was diagnosed almost

a year ago with PMG. I feel very lucky and fortunate that he has

never had a seizure yet, however has a lot of development delays. He

didn't walk until 16 months of age. He will be 2 next month and is

still not talking. Anyway, that is not why I am posting....

I am attending college fulltime and in my Composition class I have

to write an extrodinary long term paper with at least 14-17 sources.

I chose to write about PMG. Since all of us here know so much about

this subject, if you were to read a term paper about it, what kind

of information do you think should be included. I am wanting to

write this in such a way, that the average person can read it and

leave with some basic knowledge of PMG and what it entails. Any

suggestions? I am also thinking of doing a survey or an interview.

Thanks for your help. I know that many of you are very busy taking

care of your little ones, but, any feedback would be greatly

appreciated.

Sawvell

Mom to age: 23 months

Bilateral parasagittal parietooccipital polymicrogyria

[Guest guest]

I was told before that the PMG is a static condition...it will never get any

worse and it will never get any better.

I have been told that the seizures are what causes the loss of skills and

the regression. So I had some hope before seeing the last specialist,

because

We had gotten the seizures under control fairly quickly.

2/3 rds of s brain has PMG but they still called his CBPS.

_____

From: polymicrogyria [mailto:polymicrogyria ]

On Behalf Of Penny Stuehler

Sent: Saturday, September 16, 2006 1:03 PM

To: polymicrogyria

Subject: Re: I need some input, please!

,

I think and Dianna's posts touch on something that I have wondered

about. They have children have PMG but low frequency of seizures. It sounds

like their doctors expected their children to be worse off based on the

extent of PMG. However, the PMG their children have does not seem to be

causing the bad seizures that often accompany the condition. I often wonder,

what plays the bigger role here, the PMG itself or the epilepsy it can

cause.

My step daughter has unilateral PMG along one side of the hemispheric

fissure (only a small area of the brain is involved), yet she is severely

mentally retarded. So why is my step daughter so much worse off? My,

uneducated, theory is; because her PMG caused her to have a catastrophic

seizure disorder (Lennox Gastaut syndrome) which is progressive. Bear in

mind, my step daughter was not always severely affected. She was born with

PMG but only slightly delayed. Her decline in skills didn't start until the

Infantile spasms evolved into LGS. I don't feel her condition worsen because

of PMG, it was because of the LGS it caused.

I would love to see someone do a study that investigates the outcome of PMG

based on the seizure disorders it causes (or doesn't cause) as opposed to

what region or percentage of the brain is affected.

jenrific <jenrificyahoo (DOT) <mailto:jenrific%40yahoo.com> com> wrote:

I don't post all that often on here, but do find time to read

through most of the new posts. My son, , was diagnosed almost

a year ago with PMG. I feel very lucky and fortunate that he has

never had a seizure yet, however has a lot of development delays. He

didn't walk until 16 months of age. He will be 2 next month and is

still not talking. Anyway, that is not why I am posting....

I am attending college fulltime and in my Composition class I have

to write an extrodinary long term paper with at least 14-17 sources.

I chose to write about PMG. Since all of us here know so much about

this subject, if you were to read a term paper about it, what kind

of information do you think should be included. I am wanting to

write this in such a way, that the average person can read it and

leave with some basic knowledge of PMG and what it entails. Any

suggestions? I am also thinking of doing a survey or an interview.

Thanks for your help. I know that many of you are very busy taking

care of your little ones, but, any feedback would be greatly

appreciated.

Sawvell

Mom to age: 23 months

Bilateral parasagittal parietooccipital polymicrogyria

[Guest guest]

I too would like to see such a study. My daughters abilities have

deteriorated since the onset of more severe seizures which are now

only controlled partially by medication. She is now 5 and doing less

with her hands than when she was 2. She has Diffuse Bilateral pmg and

has never progressed beyond the abilities of a 6 month old. Only her

infectious smile keeps us going

Dom

> I don't post all that often on here, but do find time to read

> through most of the new posts. My son, , was diagnosed almost

> a year ago with PMG. I feel very lucky and fortunate that he has

> never had a seizure yet, however has a lot of development delays. He

> didn't walk until 16 months of age. He will be 2 next month and is

> still not talking. Anyway, that is not why I am posting....

> I am attending college fulltime and in my Composition class I have

> to write an extrodinary long term paper with at least 14-17 sources.

> I chose to write about PMG. Since all of us here know so much about

> this subject, if you were to read a term paper about it, what kind

> of information do you think should be included. I am wanting to

> write this in such a way, that the average person can read it and

> leave with some basic knowledge of PMG and what it entails. Any

> suggestions? I am also thinking of doing a survey or an interview.

> Thanks for your help. I know that many of you are very busy taking

> care of your little ones, but, any feedback would be greatly

> appreciated.

> Sawvell

> Mom to age: 23 months

> Bilateral parasagittal parietooccipital polymicrogyria

>

>

>

>

>

>

>

[Guest guest]

Agreed, my son was developing great until seizures started at

4.5 mths and now he doesn't sit up, eat, communicate, grab for

anything. He just seizures and sleeps. This is so hard..

I am sure it is seizures not the pmg.

Another point about developmental delay - it can be caused by AED's

too. More drugs more delays... This is why I am trying so hard to

stop 's seizures in other ways....

will be 1 on Friday this is a really difficult week for me,

yours prayers for my little man would be appreciated.

Rose and the beautiful .

> > I don't post all that often on here, but do find time

to read

> > through most of the new posts. My son, , was diagnosed

almost

> > a year ago with PMG. I feel very lucky and fortunate that he has

> > never had a seizure yet, however has a lot of development

delays. He

> > didn't walk until 16 months of age. He will be 2 next month and

is

> > still not talking. Anyway, that is not why I am posting....

> > I am attending college fulltime and in my Composition class I

have

> > to write an extrodinary long term paper with at least 14-17

sources.

> > I chose to write about PMG. Since all of us here know so much

about

> > this subject, if you were to read a term paper about it, what

kind

> > of information do you think should be included. I am wanting to

> > write this in such a way, that the average person can read it

and

> > leave with some basic knowledge of PMG and what it entails. Any

> > suggestions? I am also thinking of doing a survey or an

interview.

> > Thanks for your help. I know that many of you are very busy

taking

> > care of your little ones, but, any feedback would be greatly

> > appreciated.

> > Sawvell

> > Mom to age: 23 months

> > Bilateral parasagittal parietooccipital polymicrogyria

> >

> >

> >

> >

> >

> >

> >

[Guest guest]

Hi ! I want to be the first to officially request a copy of

your term paper when it's done!! It sounds like a great project and

I'd be interested in seeing the results.

As a reader, I would think it would be great to read it in three

parts. The first would be the basics of how the brain works and

forms, and the difference in the way it forms during PMG. The second

part could be about PMG itself - the different types, the tests that

diagnose it, the possible causes and the potential effects. Last and

best could be personal stories and interviews, which is where we

could come in! I bet that would make your paper stand out among the

rest, and it would put a human face on all the facts, figures and

theories about children with neurological disorders.

Good luck to you!

and Sophia

>

> I don't post all that often on here, but do find time to read

> through most of the new posts. My son, , was diagnosed

almost

> a year ago with PMG. I feel very lucky and fortunate that he has

> never had a seizure yet, however has a lot of development delays.

He

> didn't walk until 16 months of age. He will be 2 next month and is

> still not talking. Anyway, that is not why I am posting....

> I am attending college fulltime and in my Composition class I have

> to write an extrodinary long term paper with at least 14-17

sources.

> I chose to write about PMG. Since all of us here know so much

about

> this subject, if you were to read a term paper about it, what kind

> of information do you think should be included. I am wanting to

> write this in such a way, that the average person can read it and

> leave with some basic knowledge of PMG and what it entails. Any

> suggestions? I am also thinking of doing a survey or an interview.

> Thanks for your help. I know that many of you are very busy taking

> care of your little ones, but, any feedback would be greatly

> appreciated.

> Sawvell

> Mom to age: 23 months

> Bilateral parasagittal parietooccipital polymicrogyria

>