RE: Right side only PMG? Anyone?

[Guest guest]

My daughter is PMG right side only and I am in a support group of many left

hemiparesis CP kids that are mostly similar diagnosis. We do several different

type therapies but I think kinesiotape has been so helpful the neurologist is

the one who said learn it and use it often. Nisha also receives estim that

awakens her muscles that don't work well. We have done cranial sacral therapy

too. She swims does gymnastics and therapeutic riding.I believe that Nisha had

seizures when she had big jumps in her development. Its like she had the seizure

then could ride her bike well. Once she had a seizure after spinning on a chair

and once her language and response time improved.Diane

To: polymicrogyria

From: vanessa.aranda0311@...

Date: Thu, 12 May 2011 17:25:19 -0700

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]

Dear ,

My 8 year old daughter Eva also has right sided PMG with the same

symptoms as , and global delays in infancy. She is also on the

autism spectrum but high functioning (Asperger's) with some learning

difficulties but still mainstreamed in the neighborhood school at this

point, with some accommodations. Our very exciting breakthrough this

year (after years of OT and about 2 years of almost daily work on it)

was gaining enough control of her left hand/fingers to do shoe tying -

wow!!!! Eva has really come a long way. We have not gone to Dr. Dobyns

but see both a traditional neurologist for seizure meds (she has partial

seizures) and we just started neurotherapy this month to see if we could

" rewire " some of her brain activity to enhance her learning and social

understanding (the doctor doing the neurotherapy didn't know how her PMG

would impact the therapy but we thought it couldn't hurt so we're giving

it a go - will keep everyone posted if does indeed help.)

I don't know the age of your child and where you're at in your journey,

but I will say this - never say never! My daughter has already made

more progress than we ever thought possible.

Blessings,

>

> 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

>

> ________________________________

> From: <vanessa.aranda0311@...

> <mailto:vanessa.aranda0311%40yahoo.com>>

> To: " polymicrogyria

> <mailto:polymicrogyria%40yahoogroups.com> "

> <polymicrogyria <mailto:polymicrogyria%40yahoogroups.com>>

> 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@...

> <mailto:beck97%40bellsouth.net> " <beck97@...

> <mailto:beck97%40bellsouth.net>>

> 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]

Wow that is great news! Go Eva! I Bet she is so proud. I was trying to help

Nisha to buckle her own seat belt any suggestions?

Diane

Re: Right side only PMG? Anyone?

Dear ,

My 8 year old daughter Eva also has right sided PMG with the same

symptoms as , and global delays in infancy. She is also on the

autism spectrum but high functioning (Asperger's) with some learning

difficulties but still mainstreamed in the neighborhood school at this

point, with some accommodations. Our very exciting breakthrough this

year (after years of OT and about 2 years of almost daily work on it)

was gaining enough control of her left hand/fingers to do shoe tying -

wow!!!! Eva has really come a long way. We have not gone to Dr. Dobyns

but see both a traditional neurologist for seizure meds (she has partial

seizures) and we just started neurotherapy this month to see if we could

" rewire " some of her brain activity to enhance her learning and social

understanding (the doctor doing the neurotherapy didn't know how her PMG

would impact the therapy but we thought it couldn't hurt so we're giving

it a go - will keep everyone posted if does indeed help.)

I don't know the age of your child and where you're at in your journey,

but I will say this - never say never! My daughter has already made

more progress than we ever thought

[Guest guest]

We did a lot of OT hand strengthening exercises prior to learning how to

buckle and this helped a lot (having her dig dice out of big wads of

modeling clay, for example). We also did a lot of proprioceptive

focused activities (learning how much pressure to exert to accomplish

certain tasks.) I used to have a list of such targeted activities, if

I can find it I will send it on, otherwise you may Google either

proprioceptive activities and/or hand strengthening activities. They

helped her a lot it seems.

On a related note, we also found some other really handy (no pun

intended) items through a catalog for people with arthritis that we

found online. For example, we found something that you put on a key to

make the doors much easier to turn - excellent for people with limited

hand dexterity for whatever reason. You can also find items such as

hooks to help with buttoning clothes, devices to help with shoe tying,

jar opening, etc. They have really helped boost independence and self

esteem.

> Wow that is great news! Go Eva! I Bet she is so proud. I was trying to help

Nisha to buckle her own seat belt any suggestions?

> Diane

> Re: Right side only PMG? Anyone?

>

> Dear ,

>

> My 8 year old daughter Eva also has right sided PMG with the same

> symptoms as , and global delays in infancy. She is also on the

> autism spectrum but high functioning (Asperger's) with some learning

> difficulties but still mainstreamed in the neighborhood school at this

> point, with some accommodations. Our very exciting breakthrough this

> year (after years of OT and about 2 years of almost daily work on it)

> was gaining enough control of her left hand/fingers to do shoe tying -

> wow!!!! Eva has really come a long way. We have not gone to Dr. Dobyns

> but see both a traditional neurologist for seizure meds (she has partial

> seizures) and we just started neurotherapy this month to see if we could

> " rewire " some of her brain activity to enhance her learning and social

> understanding (the doctor doing the neurotherapy didn't know how her PMG

> would impact the therapy but we thought it couldn't hurt so we're giving

> it a go - will keep everyone posted if does indeed help.)

>

> I don't know the age of your child and where you're at in your journey,

> but I will say this - never say never! My daughter has already made

> more progress than we ever thought

>

>

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

>

>