Re: bilateral generlized pmg

[Guest guest]

My girl has bilateral PMG, affects her right side of her body more than her left

though. Right eye vision not so great, right leg weaker than left.

18mths, still not sitting unassisted but learnt to hold her head up just before

her 1st birthday. Teeth were late too cutting her first tooth just after first

birthday. Is now rolling from back to front but is still hard work holding her

head up in that position. We have started Hydrotherapy and she has OT once a

week, had made a huge difference in her strength.

She has a great personality, is strong willed and knows what she wants, smiles

alot. Our biggest problem is keeping her spasms under control.

Hope this helps. How old is your child?

Kat

________________________________

To: polymicrogyria

Sent: Saturday, 10 March 2012 1:37 PM

Subject: bilateral generlized pmg

 

Parents who's child had bilateral generlized pmg when were they able to meet

their milestone? What do they have the most trouble with?

le

[Guest guest]

My daughter just turned five months. She was just diagnosed a few weeks ago. She

also had epilepsy and we have almost got that under control for now. She is

starting to get head control but does best holding up her head during tummy

time. She smiles and has laughed a few time. She tries to crawl but can't pick

her body up. She rolls over from her tummy to her back and one time from her

back to her tummy. When on her back she tries to pull her self up like she wants

to sit but can only get a few inches off the ground. She can only see light

right now and can't track at all. She does look around like she is looking at

things though. She doesn't really make any baby noices. And she keeps her hands

closed a lot.

A physical therapists is going to start working with her soon and once I get the

paper work done a vision therapist is going to work with her. Both of them are

through eci. Also at the end of the month we are getting a swallow test done.

________________________________

To: " polymicrogyria " <polymicrogyria >

Sent: Friday, March 9, 2012 6:45 PM

Subject: Re: bilateral generlized pmg

 

My girl has bilateral PMG, affects her right side of her body more than her left

though. Right eye vision not so great, right leg weaker than left.

18mths, still not sitting unassisted but learnt to hold her head up just before

her 1st birthday. Teeth were late too cutting her first tooth just after first

birthday. Is now rolling from back to front but is still hard work holding her

head up in that position. We have started Hydrotherapy and she has OT once a

week, had made a huge difference in her strength.

She has a great personality, is strong willed and knows what she wants, smiles

alot. Our biggest problem is keeping her spasms under control.

Hope this helps. How old is your child?

Kat

________________________________

To: polymicrogyria

Sent: Saturday, 10 March 2012 1:37 PM

Subject: bilateral generlized pmg

 

Parents who's child had bilateral generlized pmg when were they able to meet

their milestone? What do they have the most trouble with?

le

[Guest guest]

As u know our pmg kids are all different, however my chloes greatest

difficulties are swallowing.chewing.coughing.drooling.aspirating.use of her

hands right is worse. Walking. Few seizures. Unable to talk. Crawled at 22

months. Walked at 3yrs 2 months

Sent from my Droid Charge on Verizon 4GLTE

- bilateral generlized pmg

Parents who's child had bilateral generlized pmg when were they able to meet

their milestone? What do they have the most trouble with?

le

[Guest guest]

Re the aspirating, did chloe have any major signs of this? I have heard they can

have it mildly and I have asked the doc for a swallow test twice but he said if

she was doing it she would have regular chest infections. But some days after a

bottle she screams so much, she does get reflux but I am unsure if its just

that. We also have problems with drooling, and she still needs quite mushy food.

She does not grip things with her hand for every long so can not yet hold her

own bottle.

She does not walk or crawl or sit yet but am hoping oneday.... you give me hope

on that front if your girl didn't crawl till after she was 2.

How bad are her seizures?

thanks for sharing.

Kat

________________________________

To: polymicrogyria ; le

Sent: Saturday, 10 March 2012 4:36 PM

Subject: Re: bilateral generlized pmg

 

As u know our pmg kids are all different, however my chloes greatest

difficulties are swallowing.chewing.coughing.drooling.aspirating.use of her

hands right is worse. Walking. Few seizures. Unable to talk. Crawled at 22

months.. Walked at 3yrs 2 months

Sent from my Droid Charge on Verizon 4GLTE

- bilateral generlized pmg

Parents who's child had bilateral generlized pmg when were they able to meet

their milestone? What do they have the most trouble with?

le