Re: HELLO EVERYBODY

[Guest guest]

Thank you for sharing your story, it gives me hope! We are definetly going to

have another baby, will probably start trying sometime next year. We are scared

but we know it will be worth it. Did you have any special scans done while you

were pregnant with your second? Doc has mentioned a MRI on the baby at 18

weeks...?

What surgury are you looking at for her development, sorry not quite sure what

you mean. Great she has been seizure free for 6 weeks, our girl is coming up 6

weeks also after completing the ACTH treatment, we are hoping the spasms stay

away.

Thanks

Kat

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To: polymicrogyria

Sent: Thursday, 21 July 2011 10:40 PM

Subject: RE: HELLO EVERYBODY

I had a second baby they are 17 months apart. Dr Doblyns said that is was a 5%

chance the second one would have PMG and she seems fine. Nisha'sa testing was

all negative so no cause. It was the best decision for us. Whatever development

Nisha missed she learns it later with her sister. They are very loving and fight

often but mostly just play make believe all the time. It is a build in

nonjudgmental friend and therapist. Don't get me wrong it is difficult two kids

that close but I was older and we needed to do it that way. It is getting easier

but Nisha does still get so much more care so we have to take special time for

Rayna. It makes me sad when Rayna (3) talks about seizures and Nisha being

out.Know that our kids meet their milestones in their own time so you have to

celebrated the small things.We have been seizure free for 6 weeks yeah but we

are thinking surgery might be best for her development. Get the most and best

therapist and doctors.

Diane

To: polymicrogyria

From: cutekat@...

Date: Thu, 21 Jul 2011 18:49:48 +1200

Subject: Re: HELLO EVERYBODY

 

   

     

     

     

My girl is 10 months and still doesn't hold her head up either or sit up

unsupported and has very low tone. She also wriggles alot and moves her arms and

legs well and is quite strong when pushing off me when holding her. I also hope

that oneday she will become strong enough to hold her own head up and sit on her

own, She also does not smile. She has been spasm free for 1 mth after complete

ACTH treatment but doc has said she will develop other types of seizures. We are

hoping these will be easier to control with medication as the spasms were really

awful!

We are wanting to have another baby, her micro array came back normal, so I

guess we have to take a leap of faith and hope this doesn't happen again,

although it is very scarey to think about going through it again. has anyone got

good stories of having further children without problems when you don't know

what actually cauzed the PG in the first place?

Thanks

Kat

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To: polymicrogyria

Sent: Thursday, 21 July 2011 7:02 AM

Subject: Re: HELLO EVERYBODY

 

MY DAUGHTER WELL BE 1 YR OLD AND IS VERY LOW TONE SHE STILL CANT HOLD HER HEAD

UP OR SIT UP BUT MOVES AND WIGGLES ALOT ..THANKS FOR THE INFO HOW OLD WAS YOUR

DAUGHTER WHEN SHE STARTED REACHING HER MILESTONES SITTING UP WALKING ETC

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To: " polymicrogyria " <polymicrogyria >

Sent: Tue, July 19, 2011 9:16:28 PM

Subject: RE: HELLO EVERYBODY

Rosemary, 

Welcome to the group ask any questions their is a lot of support and knowledge

here.

Having PMG does not shorten your life span but I would guess some medicines long

term make you older in your elder years. It means for my daughter that she needs

to remain active to keep her muscles strong. And seizures and the meds can be

limiting and need to be monitered.

PMG is different for each person it depends on how severe and the area of

damage.

My daughter has 30% of the right side that is effected. She also experiences

frontal lobe complex partial seizures. Eventhought she has left hemiparesis

cerebral palsy, sensory, vision, processing and focus issues she is high

functioning. She runs without braces, talks well and fits in with regular kids.

As Dr. Dobyns predicted she is 95% normal but seizures are her worst enemy. Know

that we have and still do lots of therapies PT OT SLP, kinesio taping, estim,

earobics, vision therapy, therauputic riding, cranio sacral therapy, swimming,

gymnastics, augmenting education and robotic therapy.

Diane

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