Re: unilateral non-genetic polymicrogyria

[Guest guest]

Hi !! First of all... never go the worst nightmare route... just try

and take it one day at a time. Each new motor skill...a treasure. Each

smile... also a treasure. We started early intervention with our son at

about the same age...but our son has bilateral PMG...

The ABSOLUTE best piece of advice too...is to get that little guy's

information to Dr. Dobyns in Chicago... he is the national expert on

PMG... we took to him a few years back (we live in Connecticut)

It's going to be ok... keep up with the early intervention.... I'm glad to

hear he has a g tube already...because that will probably help keep his weight

up and give him the strength he needs to keep up that rolling and frolicking!

I know that alot of these kids walk, talk, go to school, and live wonderful

lives... so have hope. But take it one day at a time.

I'm a 10 year veteran of PMG now.... seems hard to believe. I won't give you

all the bad stuff.... but here is the good stuff: loves, plays, laughs,

and sparkles handsomely at everyone he sees. His constant demeanor is that of a

happy sweet guy...although he does have his moments. He is our joy, the focal

point of our family, and has taught us how to live in world of wonders... and

how to adapt to some of the biggest challenges that Mom's and Dad's can imagine.

He has made us stronger...and we .... WE are the lucky ones to have been given

him. No matter how hard it gets.... you learn to cope.

But the one thing I promise you... you will experience more unconditional

love, and meet more wonderful people....than you can ever imagine...

I still remember when was a little baby... and I remember the fear.

I guess I can just attest to the fact...that we survive...and thrive.

With much love,

, Mom to .. diffuse bilateral PMG 80%...

swingline04 wrote:

Hi,

My son is 5 months old with non-genetic,right side unilateral

polymicrogyria.He has a trach because of idiopathic vocal cord

paralysis and a g-button. I have been reading all the mail that

everyone writes in and I am scared! Since we've had him home from the

hospital he seems to be doing so much better with tracking, smiling,

rolling over, etc.. I was wondering if anyone out there can give us

more insight as to what to possibly expect over the next couple of

years. Currently, we are very proactive in getting therapy for him.

We go to a swallowing specialist 1x per week, occupational therapy 1x

per week and we have been to 2 physical therapy sessions. Recently,

he seems to have a renewed interest in the bottle. Tonight, he drank

his entire meal in one sitting without having to supplement with the

g-button. Our neurologist doesn't have a lot of answers " until he

reaches or doesn't reach certain milestones. " When we read

information on the internet it is anything from nothing to your worst

nightmare. It would be greatly appreciated if anyone with a similar

situation can e-mail me!

Thanks in advance,

In the middle of a difficulty lies opportunity.

Einstein, Albert

[Guest guest]

Hi -

I know what you must be feeling right now...a lot of uncertainity and fear. Our

daughter was also diagnosed with unilateral pmg (80% of the left side,

non-genetic). We saw three neurologists, including Dobyns and were ofter told

" to wait and see " . We started early intervention at 7months and she receives 3x

pt and 3 ot each week. Grace i now 3 yrs old...she just started walking (she

never crawled, rolled, etc.) and talks non stop. Her right arm/hand is

challenged, but it improves slowly every day. She goes to preschool, takes

ballet, and functions with her peers very well. And no seizures to date. So

every case seems to have a mind of it's own, but keep the faith that these

children can surprise you and thrive in life!

Stay strong and best of luck!

To: polymicrogyria@...: swingline04@...: Sat, 12 Jan

2008 02:24:23 +0000Subject: unilateral non-genetic

polymicrogyria

Hi,My son is 5 months old with non-genetic,right side unilateral

polymicrogyria.He has a trach because of idiopathic vocal cord paralysis and a

g-button. I have been reading all the mail that everyone writes in and I am

scared! Since we've had him home from the hospital he seems to be doing so much

better with tracking, smiling, rolling over, etc.. I was wondering if anyone out

there can give us more insight as to what to possibly expect over the next

couple of years. Currently, we are very proactive in getting therapy for him. We

go to a swallowing specialist 1x per week, occupational therapy 1x per week and

we have been to 2 physical therapy sessions. Recently, he seems to have a

renewed interest in the bottle. Tonight, he drank his entire meal in one sitting

without having to supplement with the g-button. Our neurologist doesn't have a

lot of answers " until he reaches or doesn't reach certain milestones. " When we

read information on the internet it is anything from nothing to your worst

nightmare. It would be greatly appreciated if anyone with a similar situation

can e-mail me!Thanks in advance,

_________________________________________________________________

Put your friends on the big screen with Windows Vista® + Windows Live™.

http://www.microsoft.com/windows/shop/specialoffers.mspx?ocid=TXT_TAGLM_CPC_Medi\

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[Guest guest]

Hi ,

My son is 11 and has right unilateral pmg without any genetic link.? He did not

have seizures until he was 5, but had mild hemiparesis/weakness on his left side

from birth.? Eating was not an issue for my son until he was 8 when he lost 50

pounds becasue he was gagging so often due to seizure activity - drs at the time

thought that it was becasue he didn't want to eat.? He is now a health 132 and

they realize that they were wrong.? Why he started eating again we arent' sure -

he did have a VNS implanted and an Ng tube for a few weeks, but the eating

followed a reduction in meds - definitely not the only reason though becasue the

gaggin started before the meds were increased.? anyway we got lucky.? He is

happy and has friends.? Some days he is doing 5th grade math and reading and

other days kindergarten is a stretch - depends on the seizure activity.? He has

friends and we have been very fortunate. Every day is different and we never

know what is coming next, but we do have hope that whatever it is he may

overcome it.? I hope this helps some.

Joanne

?Joanne

unilateral non-genetic polymicrogyria

Hi,

My son is 5 months old with non-genetic,right side unilateral

polymicrogyria.He has a trach because of idiopathic vocal cord

paralysis and a g-button. I have been reading all the mail that

everyone writes in and I am scared! Since we've had him home from the

hospital he seems to be doing so much better with tracking, smiling,

rolling over, etc.. I was wondering if anyone out there can give us

more insight as to what to possibly expect over the next couple of

years. Currently, we are very proactive in getting therapy for him.

We go to a swallowing specialist 1x per week, occupational therapy 1x

per week and we have been to 2 physical therapy sessions. Recently,

he seems to have a renewed interest in the bottle. Tonight, he drank

his entire meal in one sitting without having to supplement with the

g-button. Our neurologist doesn't have a lot of answers " until he

reaches or doesn't reach certain milestones. " When we read

information on the internet it is anything from nothing to your worst

nightmare. It would be greatly appreciated if anyone with a similar

situation can e-mail me!

Thanks in advance,

________________________________________________________________________

More new features than ever. Check out the new AOL Mail ! -

http://webmail.aol.com

[Guest guest]

She just got up and walked? No rolling, no crawling? What about army crawling?

Traci

unilateral non-genetic

polymicrogyria

Hi,My son is 5 months old with non-genetic,right side unilateral

polymicrogyria.He has a trach because of idiopathic vocal cord paralysis and a

g-button. I have been reading all the mail that everyone writes in and I am

scared! Since we've had him home from the hospital he seems to be doing so much

better with tracking, smiling, rolling over, etc.. I was wondering if anyone out

there can give us more insight as to what to possibly expect over the next

couple of years. Currently, we are very proactive in getting therapy for him. We

go to a swallowing specialist 1x per week, occupational therapy 1x per week and

we have been to 2 physical therapy sessions. Recently, he seems to have a

renewed interest in the bottle. Tonight, he drank his entire meal in one sitting

without having to supplement with the g-button. Our neurologist doesn't have a

lot of answers " until he reaches or doesn't reach certain milestones. " When we

read information on the internet it is

anything from nothing to your worst nightmare. It would be greatly appreciated

if anyone with a similar situation can e-mail me!Thanks in advance,

_________________________________________________________________

Put your friends on the big screen with Windows Vista® + Windows Live™.

http://www.microsoft.com/windows/shop/specialoffers.mspx?ocid=TXT_TAGLM_CPC_Medi\

aCtr_bigscreen_012008

[Guest guest]

Get the power of Windows + Web with the new Windows Live.

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[Guest guest]

Hello! This will actually be my first post! We found out Dec. 26,

2007 that our son, Braden, has right-sided PMG. He is 11 1/2 months

old (he will be one Jan. 28th). We became worried when he was around

5 months old because he wasn't using his left hand. He would keep it

fisted and wouldn't use it. We immediately called the state ECI

program and they started us with Physical and Occupation Therapy once

a week. We also meet with their Developmental Specialist as well.

Early intervention is vital in brain development. The only motor

skills we are seeing he has trouble with are the ones that require

both arms to do the work (pulling up, crawling on all four-he is

close though!).

Since the diagnosis, we have started therapy twice a week and

extended it to 45 minutes per session. Braden has really progressed

wonderfully. He is really starting to use the left hand, today he

even used that hand to try to stop me from sucking buggers out of his

nose!! Funny, the things we appreciate! He is starting to realize

that he has that hand/arm but is noticing that it doesn't really

cooperate. Braden hasn't had any eating issues or seizures. That is

the frustrating thing about this diagnosis is how each kid is unique

in their abilities. Frustrating!!! We don't know what to expect.

We have to keep close to a developmental specialist and watch those

milestones. Braden is army crawling and has good balance. Pulling up

is hard, as he only tries with one hand. So we are there to teach him

to extend the left arm and teach him how to use it. The therapists

for Braden are hopeful he will catch up. But we just don't know. We

have to watch, and teach!! My husband and I do everything the

therapists tell us to do CONSTANTLY!! We are also lucky to have my

family in town, so my dad watches him three days a week when I go to

work (I am a teacher) and he also works on those motor skills with

him. The other two days he is at a home daycare. We have to rewire

the brain. We have to make those connections that weren't made. It is

possible, the brain is an amazing machine. WE have to do it though,

not mother nature. ya know? Honestly, our son is making great

strides. Every week when the therapists come (with the state program

in Texas, they come to your home and do the sessions), they are

amazed at his growth and can tell we follow through. So, my advice,

watch those milestones, listen and do what the therapists say, and

see a developmental specialist. We also get Botox on Jan. 21. It will

open up that hand and we will begin a more intense therapy with that

hand and how to use it.

Cognitively, I think he is doing super. He is waving bye, bye, loves

to play peek-a-boo, talks up a storm, loves books and pointing at all

the pictures, etc. So far we are meeting our milestones there.

Again, each child is unique. Our son, well, honestly if you were to

meet him, you probably wouldn't even know anyhting was wrong. He

looks perfectly normal. Is talking, eating, playing, INTO EVERYTHING,

normal. We pray we will never have seizures but know we can't be in

denial and need to look for the signs. When he starts school we will

also have to watch closely...as the right brain is what kids use to

learn how to read...so he may have learning disabilities. Careful

care.

What a gift we have from God. He has a bigger plan for our little

ones. Seems unfair and I have begged God to burden me, not him, but

it is what He has given us. I truly believe we are given what we can

handle...We are good parents. Our babies are strong. Stay positive,

this diagnosis will weigh on your heart, it is a wait and see. Stay

strong for your little one!! I think when Braden meets milestones

(like army crawling) we take it even more to heart, to know how much

practice, work, patience, time, energy that little boy ALREADY has.

He is going to be an amazing kid!! Yours will too!!

>

> Hi,

>

> My son is 5 months old with non-genetic,right side unilateral

> polymicrogyria.He has a trach because of idiopathic vocal cord

> paralysis and a g-button. I have been reading all the mail that

> everyone writes in and I am scared! Since we've had him home from

the

> hospital he seems to be doing so much better with tracking,

smiling,

> rolling over, etc.. I was wondering if anyone out there can give us

> more insight as to what to possibly expect over the next couple of

> years. Currently, we are very proactive in getting therapy for him.

> We go to a swallowing specialist 1x per week, occupational therapy

1x

> per week and we have been to 2 physical therapy sessions. Recently,

> he seems to have a renewed interest in the bottle. Tonight, he

drank

> his entire meal in one sitting without having to supplement with

the

> g-button. Our neurologist doesn't have a lot of answers " until he

> reaches or doesn't reach certain milestones. " When we read

> information on the internet it is anything from nothing to your

worst

> nightmare. It would be greatly appreciated if anyone with a similar

> situation can e-mail me!

>

> Thanks in advance,

>

>

>

[Guest guest]

Hello & ...after reading your posts, I don't feel quite

so alone anymore. Some days, it sure seems like your the only one

dealing with this in the whole world! I have a beautiful and

charming, 16 month old son with right-sided (unilateral)

polymicrogyria (as well as a vascular birthmark known as CMTC or van

Louhuizen Syndrome.) The unknowns are the hardest part! He has

left hemiparesis as well - the fisting of his left hand, the lack of

use, the weakness, the motor delays (he is very close to walking and

actually took 13 steps on Friday!), we attend physical and

occupational (OT) therapy, and of course have numerous doctors

involved in his care. He has had abnormal EEG's and warnings to

watch for seizures (thankfully nothing yet). Reading your messages

almost mirrors our life!

My son went last week for a mold for a rigid AFO...(Articulation

Foot Orthotic??) to help keep his left foot in the proper position

and to prevent the calf muscle from tightening...so again we are now

enetering a new world in realtion to the brace. Yet another new

world...

Just today, I attended a " MusicKidz " class with him and came home in

tears becaouse it was 'my' child that was 'different'. Please don't

get me wrong, I am extremely proud of him, and how far he has come,

and I am proud of myself as his mother in taking my observations,

and gut instincts, very seriously, and taking him to the best

doctors, but after all I am his mom, and as his mom, I only want the

best for him, and the emotions occassionally overtake me; the fear,

the worry, the anger, the frustration, the exhaustion! Some days it

becomes too much and the littlest things can trigger me. Much like

today at the music program. I had a good cry and know that tomorrow

will be a better day,and the music class next week will be easier.

It was our first 'kids program' in the real world. I have chosen to

stay at home with him (as well as my 2 older daughters) and know

very few people in the area with little ones - so it was adifferent

environment and a new experiencefor both of us. I am beginning to

understand that the 'unknowns' and the 'firsts' are definitely the

hardest! Any advice in that department?

, you mentioned that your son looks fine, and if no one knew

what he had they wouldn't be any wiser, that is like my son too.

Unless you knew what to look for, at first it would be hard to tell,

unless of course you were to watch him for awhile, then you would

probably pick up on it. You mentioned that he is crawling 'army'

style - we called it 'commando crawl'. What we did to help him bend

his left leg (as that was the leg that he was dragging) was at first

to hold the right knee, to prevent him from bending it, and then he

would bend his left leg, but because I couldn't chase him around the

house all day holding his right knee/leg, I went to a orthotic

specalist and told him my idea of making a knee brace (for his right

knee) to prevent him from bending it so that he had to bend his left

knee/leg for movement. I only wanted to use the brace for 5 - 10

minutes a day, a couple times a day, to help create those paths in

his brain needed to to bend his left leg. My theory worked (with

the support of a good orthotic specialist and family doctor) and

with two weeks of doing that he was crawling on all fours!!! If I

were to do it again, I would have added a heel cup,because he tended

to push off with his right foot, even thought he couldn't bend his

leg.

I've rattled on much too long but I hope that some of what I have

written helps; I know it has helped me to get some of it out and to

share my experiences so far. Again, it is comforting to know that we

are not alone in our experiences and that we are only an e-mail

away

> >

> > Hi,

> >

> > My son is 5 months old with non-genetic,right side unilateral

> > polymicrogyria.He has a trach because of idiopathic vocal cord

> > paralysis and a g-button. I have been reading all the mail that

> > everyone writes in and I am scared! Since we've had him home

from

> the

> > hospital he seems to be doing so much better with tracking,

> smiling,

> > rolling over, etc.. I was wondering if anyone out there can give

us

> > more insight as to what to possibly expect over the next couple

of

> > years. Currently, we are very proactive in getting therapy for

him.

> > We go to a swallowing specialist 1x per week, occupational

therapy

> 1x

> > per week and we have been to 2 physical therapy sessions.

Recently,

> > he seems to have a renewed interest in the bottle. Tonight, he

> drank

> > his entire meal in one sitting without having to supplement with

> the

> > g-button. Our neurologist doesn't have a lot of answers " until

he

> > reaches or doesn't reach certain milestones. " When we read

> > information on the internet it is anything from nothing to your

> worst

> > nightmare. It would be greatly appreciated if anyone with a

similar

> > situation can e-mail me!

> >

> > Thanks in advance,

> >

> >

> >

>

[Guest guest]

Hi there,

Braden sounds very similar to my son , except that his is the

opposite side. We noticed first when he was about 4-5 months because

he would grab his right hand with his left hand to do things like

suck on it, or whatever. He was started pretty soon thereafter with

PT and OT once a week and had his MRI when he was about 6 months old.

He made all his milestones in normal range, sitting up, crawling

(monkey crawl one-sided), and now walking.He is now almost 16 months

old and quite a chatterbox and a very bright little boy.

We took him to see Dr. Dobyns in Chicago over Thanksgiving which was

a huge help. He knows everything it seems, and was very comforting to

listen to, in the fact that at least someone has some anwsers.

hasn't had any seizures to this day (thank goodness) and

hopefully he never will. Dr. Dobyns said 80% of diagnosed have

seizures.

We pray for him every day and know that we are very blessed that his

case is so mild. Dr. Dobyns told us we are best case scenerio, and

for that we thank God. I had just read your e-mail and noticed many

similarities with your Braden. How old is he now? Also you said he is

trying to pull up, how long has he been trying? I was amazed how

just one day realized in order to pull up he had to have his

other hand up there for leverage. After that he has done it ever

since. Also at first never reached out for anything with his

right hand and now he will reach and open his hand to grab, sometimes

he gets it sometimes not but he is learning how to grasp items and

release so well now. It's amazing how smart kids are.

I would love to hear more about Braden.

Thanks for writing,

Kandis

check out our family blog

www.froebefam.blogspot.com

> >

> > Hi,

> >

> > My son is 5 months old with non-genetic,right side unilateral

> > polymicrogyria.He has a trach because of idiopathic vocal cord

> > paralysis and a g-button. I have been reading all the mail that

> > everyone writes in and I am scared! Since we've had him home from

> the

> > hospital he seems to be doing so much better with tracking,

> smiling,

> > rolling over, etc.. I was wondering if anyone out there can give

us

> > more insight as to what to possibly expect over the next couple

of

> > years. Currently, we are very proactive in getting therapy for

him.

> > We go to a swallowing specialist 1x per week, occupational

therapy

> 1x

> > per week and we have been to 2 physical therapy sessions.

Recently,

> > he seems to have a renewed interest in the bottle. Tonight, he

> drank

> > his entire meal in one sitting without having to supplement with

> the

> > g-button. Our neurologist doesn't have a lot of answers " until he

> > reaches or doesn't reach certain milestones. " When we read

> > information on the internet it is anything from nothing to your

> worst

> > nightmare. It would be greatly appreciated if anyone with a

similar

> > situation can e-mail me!

> >

> > Thanks in advance,

> >

> >

> >

>