Re: NEED HELP

[Guest guest]

Can anyone help? As you know i'm getting the same messages with attachments as

everyone else and had one that said it was from Sandie, i knew it wasn't and

blocked the sender and now i'm not getting any of Sandie's messages, anyone know

how to fix this?

.x

a.. .

[Guest guest]

Hey !  This is , I think you contacted me on myspace.  I used to

blame myself for Tanner's condition.  " Maybe it was b/c I drank before I knew I

was pregnant " , " was it b/c I worked 3rd shift " , " maybe the stress of being

alone and pregnant did it " , " maybe it was the hot baths I took " ,  I could go on

and on. 

Tanner's dad and I finally got back together when he was 3.  I got pregnant

again when Tanner was 5.  We finally got Tanner's diagnosis of Congenital

Bilateral Perisylvian Syndrome while I was pregnant with Leah.  She too has

CBPS, and I know I didn't do anything wrong with her.  I went by the book.  So,

to answer your question, No I don't think it was anything we did while we were

pregnant. 

As far as your husband goes, I think it takes them a little longer than it does

us.  My husband is still angry.  He is wonderful and now helps me with

everything.  I couldn't ask for a better husband.  Don't get me wrong, I still

have my moments when I get sad or worried.  I just try to live one day at a time

and not focus too much on the future, just get through each day and enjoy and

cherish my precious babies.

NEED HELP

Hello Everyone my name is Dunn.  I have a 7 month old son named Sullivan

Dunn.  He was diagnosied with Bilateral generalized polymicrogyria @ 12 weeks

old.  I have really been struggling emotionally.  I don't know how to come to

terms with it or even how to process it.  My husband never wants to talk about

it and I can't talk to anyone in my family.  I cry almost every night and I feel

like I need help.  Does anyone know of any support groups in the St. Louis, MO

area?  OR does anyone have any advice as to how I can deal with this?  Please

let me know?  Thank you,

[Guest guest]

-

I have to jump into your message to regarding your question if you did

anything to cause Sullivan to have PMG.  I know that it is easy to think that

because I at first wondered too.  We did not do anything to cause PMG and I know

that the other parents on here would agree (at least I hope!)..  Some is caused

from genetics, CMV, or like my son, they have no idea.  I also read your story

about finding out Sullivan had PMG.  One thing that I saw was you mentioning

that he doesn't really look at you.  My son has vision problems and that is how

I first noticed that something wasn't exactly right with him.  This may seem

like a dumb question because most likely you have, but have you taken him to a

neuro-opthomologist?  Gage got glasses when he was 10 months old and there was

major changes in him within just a month.  By the time he was 11 months he

started sitting on his own, grabbing for toys and holding his bottle.  He never

did it until

got glasses.  It was if a whole world opened up for him.  I think just the

extra help with vision made a difference in his development.  Vision may not be

an issue for Sullivan, but you saying he doesn't look at you was what Gage did.

Hang in there and know that you always have some other parents here to ask

questions or just talk with.

NEED HELP

Hello Everyone my name is Dunn.  I have a 7 month old son named Sullivan

Dunn.  He was diagnosied with Bilateral generalized polymicrogyria @ 12 weeks

old.  I have really been struggling emotionally.  I don't know how to come to

terms with it or even how to process it.  My husband never wants to talk about

it and I can't talk to anyone in my family.  I cry almost every night and I feel

like I need help.  Does anyone know of any support groups in the St. Louis, MO

area?  OR does anyone have any advice as to how I can deal with this?  Please

let me know?  Thank you,

[Guest guest]

Hello again !!

I read what  said and she is absolutely right.  (I " virtually " met her in

the facebook pmg support group and she has been a godsend to me!!-- Thanks

     )  I lost so much sleep and cried so many hours trying figure out

how and why him, why me. 

 

I have a bleeding/clotting disorder similar to hemophilia and I get severe nose

bleeds which I sometimes pass out from loss of blood and end up in the hospital.

One specific night while prego, I had a bad one.  In and out of consciousness, I

decided to go to the ER, thinking if I wasnt getting enough oxygen, surely

my fetus wasnt either.  The morons at the hospital said, oh you had a nose

bleed, big deal, you look fine now, go home. I had read somewhere if a fetus is

denied oxygen could cause it (as is the case could sometimes with twins or

umbilical chord around the neck).

 

I, too, was blaming myself and was certain I had done this to my baby.  I

addressed my concerns to the pediatric neurologist.  HE ASSURED ME this is NOT

my fault.  I did NOTHING that could have caused this!!  He said the lack of

oxygen probably didnt help matters but PMG is onset of a rare genetic issue, CMV

during the 2nd trimester, or completely spontaneous and unknown (from what I

understand, like Gage, 's son) 

 

The neuro really thinks that TJs is genetic but we need to wait for Dr

to get back from his cushy summer off before we can have more genetic testing

done in Nov.  Once we have the results, I hope to get in with Dr Dobyns at the

University of Chicago. (I spoke of him in a previous email)

 

YOU DID NOTHING TO CAUSE THIS!! Its sad to say, but it just is what it is...

somethings just happen.

Sincerely,

(Mother of TJ Joy: almost 2: Perisylvian PMG with Spinal Abmornalities)

NEED HELP

Hello Everyone my name is Dunn.  I have a 7 month old son named Sullivan

Dunn.  He was diagnosied with Bilateral generalized polymicrogyria @ 12 weeks

old.  I have really been struggling emotionally.  I don't know how to come to

terms with it or even how to process it.  My husband never wants to talk about

it and I can't talk to anyone in my family.  I cry almost every night and I feel

like I need help.  Does anyone know of any support groups in the St. Louis, MO

area?  OR does anyone have any advice as to how I can deal with this?  Please

let me know?  Thank you,

[Guest guest]

HI ,

My son zach is 5, he was diagnosed when he was a week old.Sometimes i forget

that there is something " wrong " with him. The only advice i have is its one day

at a time. I live in Springfield Il but all our care is in St louis. Cardinal

Glennon. We go down about 3 or 4 times a month to see all our drs. down there. I

havent found a support group down there but im going to ask my dr if she knows

of anything. Good Luck. If you ever need to talk or anything dont hesitate to

email me my private email is ttzsnow@.... I would be happy to meet

up with you and just sit down in talk on one of our trips to st louis. We

usually try to make a day of it go to the zoo and stuff but not till its warm

again to cold.

Good Luck

Natasha

>

> Hello Everyone my name is Dunn. I have a 7 month old son named

Sullivan Dunn. He was diagnosied with Bilateral generalized polymicrogyria @ 12

weeks old. I have really been struggling emotionally. I don't know how to come

to terms with it or even how to process it. My husband never wants to talk

about it and I can't talk to anyone in my family. I cry almost every night and

I feel like I need help. Does anyone know of any support groups in the St.

Louis, MO area? OR does anyone have any advice as to how I can deal with this?

Please let me know? Thank you,

>