Re: Right side only PMG? Anyone?

[Guest guest]

My 3year old son has unilateral, right sided PMG.  He has left side

weakness, especially in the arm and hand.  He typically keeps his left hand in

a

fist.  He is slowly starting to use it a little now.  

- one of the leading experts on PMG is Dr. Dobyns who is at Seattle

Children's Hospital.  There is one other doctor in Italy who Dr. Dobyns has

mentioned as being more knowledgeable.  There is also a doctor I believe

at Harvard by the name of  Walsh who is doing research on

bilateral

pmg. 

As far as seizures go, some kids have them so kids don't.  My son has had them

since he was 14 months old.  We just stared a new medication a few weeks ago

and

his seizures have finally stopped.  The types of seizures these kiddos have

varies widely.  Ask the neurologist for and EEG to see if there is any seizure

activity.  Some start medication to prevent seizures before they start but I

don't know much about that. 

I have a blog about my son and our life if you are interested.  It is

at: http://lifeonmysterylane.blogspot.com/

Stacey

________________________________

To: " polymicrogyria " <polymicrogyria >

Sent: Thu, May 12, 2011 5:25:19 PM

Subject: Right side only PMG? Anyone?

 

I'm curious if anyone has a kiddo with Right side PMG only. My son, and it seems

everyone else we've met, is either left only or both sides. Just curious. Thanks

for Josh

Sent from my iPhone

On May 12, 2011, at 5:20 PM, " beck97@... "

wrote:

> I have a dear friend whose baby was diagnosed with unilateral PMG. The baby (8

>months) has left sided weakness. Are there any centers of excellence, doctors

>who specialize in PMG or special physical therapy techniques that the group

>recommends. Her baby has not had a seizure but the neurologist was surprised by

>this. Any luck with seizure prevention. Is anyone doing any research with the

>disorder with stem cells or anything cutting edge. We are in the Midwest but

>would travel anywhere.

>

> Thanks so much, Beck

>

>

[Guest guest]

My 3-yr old son has right sided PMG and doesn't have seizures. We have done

physical therapy in the past, but ride now we are doing occupational, manual and

equine therapies. He uses he left arm and hand more and more everyday. It seems

that the older he gets and more aware he becomes the better it gets. We have

done Botox injections in his hand, arm and leg. He wears a Benik brace on his

left hand to help extend his wrist. All of these things together have worked to

get him where he is today. I also think being in daycare with his peers has

encouraged him to progress. I know that isn't the case for all of these kiddos.

>

> > I have a dear friend whose baby was diagnosed with unilateral PMG. The baby

(8

> >months) has left sided weakness. Are there any centers of excellence, doctors

> >who specialize in PMG or special physical therapy techniques that the group

> >recommends. Her baby has not had a seizure but the neurologist was surprised

by

> >this. Any luck with seizure prevention. Is anyone doing any research with the

> >disorder with stem cells or anything cutting edge. We are in the Midwest but

> >would travel anywhere.

> >

> > Thanks so much, Beck

> >

> >

>

>

[Guest guest]

Hi - My 4 1/2 yr old son has Right Side (Unilateral) PMG, resulting in left side

hemiparesis. Touch wood, and pray, he has not had uncontrollable seizures. We

think he has had one myclonic seizure and a few absence seizures but is not on

medication. He is very outgoing, social, verbal, (cheeky) and mobile. He has

received PT, OT (since 5 mos old), speech therapy and we have him in therapeutic

horseback riding and gymnastics. He wears an articulated foot orthotic on his

left leg to help with proper foot positioning and is not thrilled with any hand

splints, so we discontinued the use of those. We were able to visit Dr. Dobyns

in Chicago in July 2009 (he is now is Seattle) and did not regret that decision

whatsoever - we travelled all the way from Alberta, in Western Canada. My son

also has a vascular malformation (CMTC and/or Klippel-Trenaunay Syndrome) in

addition to his PMG.

Every child presents differently with PMG...and the longer I am in this game the

more I am understanding this. There is not one day that goes by that we all are

not affected in some way by it. It never leaves you (as a Mom), just as it will

never leave our children. If it helps at all, you are not alone and I will help

with whatever I can to help you.

, Mom to , 4 1/2 yr old little monkey with PMG and CMTC

> >

> > > I have a dear friend whose baby was diagnosed with unilateral PMG. The

baby (8

> > >months) has left sided weakness. Are there any centers of excellence,

doctors

> > >who specialize in PMG or special physical therapy techniques that the group

> > >recommends. Her baby has not had a seizure but the neurologist was

surprised by

> > >this. Any luck with seizure prevention. Is anyone doing any research with

the

> > >disorder with stem cells or anything cutting edge. We are in the Midwest

but

> > >would travel anywhere.

> > >

> > > Thanks so much, Beck

> > >

> > >

> >

> >

[Guest guest]

________________________________

My daughter has Right sided Pmg only..

-ROxanne

To: " polymicrogyria " <polymicrogyria >

Sent: Thu, May 12, 2011 7:25:19 PM

Subject: Right side only PMG? Anyone?

I'm curious if anyone has a kiddo with Right side PMG only. My son, and it

seems everyone else we've met, is either left only or both sides. Just curious.

Thanks

for Josh

Sent from my iPhone

On May 12, 2011, at 5:20 PM, " beck97@... "

wrote:

> I have a dear friend whose baby was diagnosed with unilateral PMG. The baby (8

>months) has left sided weakness. Are there any centers of excellence, doctors

>who specialize in PMG or special physical therapy techniques that the group

>recommends. Her baby has not had a seizure but the neurologist was surprised by

>this. Any luck with seizure prevention. Is anyone doing any research with the

>disorder with stem cells or anything cutting edge. We are in the Midwest but

>would travel anywhere.

>

> Thanks so much, Beck

>

>

[Guest guest]

My son has right sided PMG and he also has digeorge syndrome. the doctors were

suprised we have not started seizures yet. im hoping that does not start either

but i guess my little guy has a double hit cause both conditions have them. my

son walks and runs with left leg problems.

> I have a dear friend whose baby was diagnosed with unilateral PMG. The baby (8

>months) has left sided weakness. Are there any centers of excellence, doctors

>who specialize in PMG or special physical therapy techniques that the group

>recommends. Her baby has not had a seizure but the neurologist was surprised by

>this. Any luck with seizure prevention. Is anyone doing any research with the

>disorder with stem cells or anything cutting edge. We are in the Midwest but

>would travel anywhere.

>

> Thanks so much, Beck

>

>

[Guest guest]

It seems everyone responded reports left side of body problems / right side PMG.

I need to research statistics more. Has anyone responded with right side body

problems only?

has right side pmg, with limited use of left side of body.

Sent from my iPad

My son has right sided PMG and he also has digeorge syndrome. the doctors were

suprised we have not started seizures yet. im hoping that does not start either

but i guess my little guy has a double hit cause both conditions have them. my

son walks and runs with left leg problems.

> I have a dear friend whose baby was diagnosed with unilateral PMG. The baby (8

>months) has left sided weakness. Are there any centers of excellence, doctors

>who specialize in PMG or special physical therapy techniques that the group

>recommends. Her baby has not had a seizure but the neurologist was surprised by

>this. Any luck with seizure prevention. Is anyone doing any research with the

>disorder with stem cells or anything cutting edge. We are in the Midwest but

>would travel anywhere.

>

> Thanks so much, Beck

>

>

[Guest guest]

Right side PMG with left body affected or the other way? I'm sorry to pry it's

just im trying to understand.

-V

Mom to Joshy 9

Sent from my iPhone

On May 16, 2011, at 10:59 PM, Roxanne Bartlett

wrote:

>

>

> ________________________________

> My daughter has Right sided Pmg only..

>

> -ROxanne

>

>

> To: " polymicrogyria " <polymicrogyria >

> Sent: Thu, May 12, 2011 7:25:19 PM

> Subject: Right side only PMG? Anyone?

>

> I'm curious if anyone has a kiddo with Right side PMG only. My son, and it

> seems everyone else we've met, is either left only or both sides. Just

curious.

> Thanks

>

> for Josh

>

> Sent from my iPhone

>

> On May 12, 2011, at 5:20 PM, " beck97@... "

> wrote:

>

> > I have a dear friend whose baby was diagnosed with unilateral PMG. The baby

(8

> >months) has left sided weakness. Are there any centers of excellence, doctors

> >who specialize in PMG or special physical therapy techniques that the group

> >recommends. Her baby has not had a seizure but the neurologist was surprised

by

> >this. Any luck with seizure prevention. Is anyone doing any research with the

> >disorder with stem cells or anything cutting edge. We are in the Midwest but

> >would travel anywhere.

> >

> > Thanks so much, Beck

> >

> >

>

>

[Guest guest]

Motor skills are located in the brain on the opposite side.

Right side only PMG? Anyone?

>

> I'm curious if anyone has a kiddo with Right side PMG only. My son, and it

> seems everyone else we've met, is either left only or both sides. Just

curious.

> Thanks

>

> for Josh

>

> Sent from my iPhone

>

> On May 12, 2011, at 5:20 PM, " beck97@... "

> wrote:

>

> > I have a dear friend whose baby was diagnosed with unilateral PMG. The baby

(8

> >months) has left sided weakness. Are there any centers of excellence, docto

[Guest guest]

Yes I'm just perplexed why everyone seems to have just Right brain PMG, or both.

When does it just affect the left brain? Maybe it's just local to CA.

There never is an answer in why Joshy 9yrs has PMG, weve looked into everything.

sometimes it bothers me. I wish there was more research.

Sent from my iPhone

> Motor skills are located in the brain on the opposite side.

> Right side only PMG? Anyone?

>>

>> I'm curious if anyone has a kiddo with Right side PMG only. My son, and it

>> seems everyone else we've met, is either left only or both sides. Just

curious.

>> Thanks

>>

>> for Josh

>>

>> Sent from my iPhone

>>

>> On May 12, 2011, at 5:20 PM, " beck97@... "

>> wrote:

>>

>>> I have a dear friend whose baby was diagnosed with unilateral PMG. The baby

(8

>>> months) has left sided weakness. Are there any centers of excellence, docto

>

>

> ------------------------------------

>

>