RE: I need some input, please!/ little bit of an up date

September 16, 2006

Well, I would like to say a few things. My son will be 5 in Nov.

has Bilateral Perisylvian PMG, mainly in the posterior region.

Which didn't effect his cognitive ability. Anyway, I gave his neuro

his report, and she was shocked. I had some people at Harvard look at

his MRI films. The neuro said if she didn't know , the report made

it sound like was Mentally Retarted. To which he is not. And she

knows that.

My point is, brain malformation or not, you DON'T know what your child

is going to be like. DON'T take someone's word for it. Just because you

have a diagnosis.

has had 1 seizure, it was the BIG one. Aug. 3rd. The day before

going home from camping. It happened when I went with my husband, and

daughter canoeing. Which was a nightmare. I came back to the A-Frame to

find this out. Luckily, he was with my mom. We did a regular EEG, and

found some activity. The doctor ended up sending us for a 2 day video

EEG. Well, after all that it was decided NO MEDS. ) Unless, he

ends up having another seizure within 6 months to a year. The doctor

said the seizure could have been triggered from the craziness of

camping. Not sleeping, routine, ect. Well, we will take that. We just

won't go camping again. HA HA We will be doing something different

next summer.

Sorry for the long post

Thanks

Dianna and .

I need some input, please!

To: polymicrogyria

> 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

>

September 16, 2006

My son has BP PMG also and is a year old.

How are the rest of your sons skills? The last specialist I went to

basically said

That was going to be severely retarded and basically we would be

doing everything for him for the rest of his life, and not to expect

anything out of him. I left there very disappointed as that is NOT what I

see. I see a child that does have some issues but cognitively he is

completely there. He just can't get his hands to work like I think he wants

to and his speech isnt' there yet. I said I was trying to teach him sign

language and he basically told us to give up on that because there was NO

WAY he'd be able to do it.

had IS seizures for about 4 weeks but has been SF since 02/15/06.

controlled with Vigabatrin.

I would just like someone elses opinion on this.

_____

From: polymicrogyria [mailto:polymicrogyria ]

On Behalf Of DiannaL@...

Sent: Saturday, September 16, 2006 9:10 AM

To: polymicrogyria

Subject: Re: I need some input, please!/ little bit of an

up date