Re: Re: PMG: Our story

[Guest guest]

Wow--this sounds so much like my daughter Sydney, except that the genesis is

likely the fact that I had twin-to-twin transfusion syndrome when the babies

were in-utero...no seizures yet, but it's always at the back of my mind.  She

is

awesome, though behind physically and doesn't yet talk (22 months) but is

so happy, affectionate, excited to be alive, and making strides in gross motor

and fine motor.  She knows 10-15 words in sign and can act out the

Itsy-Bitsy

Spider.  Her personality is that of a focused and determined hard worker. 

Things come easy to her twin sister and to my older daughter (7), so I

celebrate

the gains Syd makes because of the struggle and yet, she couldn't happier than

to play with her sisters and just be a little girl.  And my fingers are crossed

so much that they are cramped...

________________________________

To: polymicrogyria

Sent: Wed, August 18, 2010 9:24:30 PM

Subject: Re: PMG: Our story

 

Hi , 

I want you to know that there is hope!  Here's my long winded story...I had a

normal, uneventful pregnancy (despite an awful cold sore on my lip...wonder

about CMV there), gave birth through c-section to my second daughter and all was

well.  I nursed my daughter and noticed that it was really difficult and

uncomfortable with certain ways I positioned her.  I assumed it was me, too

tired, hormones, moody, etc. 

 

At 2 months of age I realized that my daughter NEVER turned her head to the

right and that her right hand was fisted all the time while she normally reached

and batted at toys with her left hand just fine.  I mentioned this to my Mom

and

husband and got the " oh, she's fine " .  I mentioned it to the pediatrician at a

monthly check up and got " well, her muscle tone is fine and she looks

healthy " . 

So, I decided to call Early Intervention myself and have her evaluated.  The

team came and she qualified for OT and PT due to a mild developmental delay. 

She began therapy at about 4 months old and was making gains and doing great. 

 

The EI therapists were the ones who opened my eyes and asked me if I planned on

finding out what the reasons for the physical delays were.  To be honest, until

that point I had no clue to even look into it.  I just figured she had a

developmental delay and she would get therapy and be fine.  Well, I realized

that I HAD to know what the cause was.  I discussed all the recent events with

the pediatrician and she said that if I wanted an MRI that she would order it

and she also referred me to a neurologist at Hasbro Children's Hospital. 

 

So,the neurological appointment was first.  We sat in the room waiting for the

doctor to come in and when he did he took one look at my daughter and said " Oh,

yep, she had a stroke in utero.  You can see the droop on her face, her high

muscle tone, etc. "   I felt like I was going to explode...total panic attack! 

He

said he had seen it so many times before, she exhibited all the signs, that we

were doing the right thing with therapy, blah, blah and that he DID NOT

recommend the MRI.  That it was not necessary since she was making gains,etc.

 

Well, now I was unhappy with his medical terminology and talking to us like we

were rocket scientists.  Plus I was disturbed that if it truly was a stroke,

what caused it and would she have another.  So since the MRI was already

scheduled we went through with it and the results were PMG...excess of gyri on

the brain.  WHAT the hell is that?  So I looked into all the info I could find

to educate myself (which actually scared the sh*t out of me). 

 

We had a follow up visit with the " know it all " neurologist and this is what he

said:  " So,I see you went ahead and had the MRI anyway... " and I said " Yes we

did and you were WRONG! "   His defense was well, the outcome is basically the

same. Take it day by day and be sure to stretch her.  Needless to say, I was

NOT

happy with this guy,  But then he said something to me that made me like

him....He said you can beat yourself up about this and keep asking why or you

can celebrate each thing she does everyday!  It doesn't matter when she learns

to walk because in the future she'll walk the same as everyone else.  He then

let us know that Polymicrogyria was rare and that the prognosis would be day by

day and basically unique.  No two people have the same issues.  He did say

that

with the brain abnormality the chances of seizures were 80% that they would some

day happen.

 

All of the above occurances were up to age 11 months.  Seizues were not at all

on my mind because she was doing so wonderfully.  She walked at 16 months and

was only about 3-4 months behind on her pysical development.  The compromised

part of her brain left her with a right sided hemiparesis, but thank GOD did not

impair and language or cognitive areas.  So a slight pyhsical delay was what we

had to face.  But last summer, standing in the middle of Santa's Village in New

Hampshire,  looked at her to see her arm shaking uncontrollably and a little

grimace on her face.  The seizures had begun!  Such an awful feeling to be

unable to help your child.  Heart wrenching!  We spent the next 4 days

watching

her like a hawk.  I was consumed with her actions.  The seizures happened

approx. ever 6 hours and lasted just 5 seconds, but God it felt like eons to see

her like that.  Our new neurologist immediatrly got her in for an EEG and put

her on

Trileptal.  Her seizures were focal seizures and presented just in her arm. 

So

thankful they weren't more severe!

 

To this day she has not had an episode sine beginning the medicine!  I am

still

observing any odd movement she makes.  But most times she's just being a silly

3

year old.  She is amazing!!!!!

 

Sorry for the long description, but I am so passionate about letting everyone

know that I am so grateful for every day with her.  Her condition really makes

me STOP taking things for granted!  This Tuesday she will be going for a Botox

procedure.  Please keep her in your thoughts as I will keep your son in mine!

Please keep in touch and stay strong!

Traci 

Subject: My 16 month old daughter was just diagnosed....

To: polymicrogyria

Date: Thursday, August 12, 2010, 4:24 AM

 

Her name is Hayden she is 16 months old was born 2 months early due to toxemia

and hypertension. We just found out last monday of her condition and are

wondering if anyone out there has the same thing and how their child

progressed... Haydens is pmg, unilateral right frontal. She can sit and thats

about it, doesn't use her left arm or leg much.