Re: Experiences with professionals

January 24, 2011

Thank you everyone for your responses to my post. My wife and I have certainly

been diligent in finding the best matches for therapists in our area and we

currently love our therapists, most of them through the early intervention

program in Allegheny County, PA. We feel very good about our decisions for

and about the support.

to : The scenario you presented with Micah is exactly what we faced with

. favors using his left hand and arm but does use his right on

occasion. Mostly, the therapists see only his left arm being used. When one of

the therapists suggested casting his right arm in order to strengthen his back

muscles, nothing about it made sense to us. Like you, we decided against the

cast and has been improving with the use of his right hand. Thank you

for sharing your experience. It is certainly comforting knowing others share our

concerns.

Brett

>

> Hi Brett,

>

> Our son Micah (Bilateral Perisylvian Polymicrogyria Syndome) has left side

weakness. His occupational therapist wanted to do serial casting on his right

hand. From his hand to his shoulder. All because he wouldn't use his left hand

WITH HER. She thought that if she restrained his whole right arm, it would force

him to use his left hand. Needless to say, I said no. After weeks of eplaining

to her, that he uses his left hand she now sees. You and your wife know Bejamin

better than anyone. Its okay to disagree and say no. When we first found out

that our son had PMG, we were told he would never walk, talk, ect... He's almost

4 years old and can run, jump, play and can also communicate by using basic

sign. He proved everyone wrong. Best of luck to you and your family!

> -

> Sent on the Sprint® Now Network from my BlackBerry®

>

> Experiences with " professionals "

>

> Hello everyone,

>

> My wife and I are new to this group. We have an 18-month old boy ()

with bilateral frontal pmg and have an amazing team of therapists, doctors, and

family for support here in the Pittsburgh, PA area. However, sometimes our

therapists have ideas that seem counterproductive from our perspective. It's not

often, but we feel like we " know " on a little deeper level and

sometimes we choose not to go down a path our therapists might recommend. We

really have no way of knowing if we make the " right " decision, except that we

are seeing progress in a lot of his abilities. I am curious to hear about

others' experiences with therapists and if your instincts about your own child

have turned out more positive than not. It's very difficult to measure, but I

feel like having trust in our parental instincts will have the most positive

influence.

>

> Thanks for welcoming us to the group. It's great to hear about other people

with similar situations! And if anyone is in the Pittsburgh area, we'd love to

meet you and your little ones!

>

> Sincerely,

> Brett

>

January 26, 2011

Hi Brett,

I am new to the group. (Hello, other parents as well!) My son, , is four

months old and also has Bilateral Perisylvian Polymicrogyria. Like , we

were given a pretty dismal prognosis and not very good support when he was

diagnosed at only 3 days old. So, my husband and I decided to choose 's

own team of practitioners! (traditional physical therapy, cranial sacral therapy

and ABM, Anat Baniel Method). Trust your instincts about your son. You know him

best!

Thank you and for sharing information about and Micah.

also has a left-side weakness. I started to notice the asymmetry pretty early

on. It turns out that he has a very stubborn case of torticollis (as well as low

tone and macrocephaly), which has only made this weakness more pronounced. I

started him with an Anat Baniel practitioner last month and recently had him

work with Anat and her team in California last week. She is one of the world's

leading experts in neuromuscular re-education for infants and children with

neurological abnormalities. Instead of using repetition and restrictive devices

to strengthen a muscle over and over like traditional therapy, this method works

to establish new connections and neural pathways in the brain. Even since last

month, has come to life with better overall movement, better eye control,

vocalization, and has started using his left arm. Although his left arm is a few

steps behind the right, it is well on its way now! I have included a link below

of what the method does if you are interested.

I look forward to sharing and learning with all of you.

Best,

> >

> > Hi Brett,

> >

> > Our son Micah (Bilateral Perisylvian Polymicrogyria Syndome) has left side