Re: Unilateral Polymicrogyria

[Guest guest]

This sounds very similar to my son. He is almost 3 1/2. I am happy to report

that He is doing great! He walked late but is otherwise right on track. He is

tight on his left side but even that is getting better! He was just discharged

from PT. He does OT once a week and does horse therapy about 6 times a month.

He gets Botox injections a couple of times a year to help with the tightness. I

would say overall he is a very NORMAL little boy...too smart for his own good!

Theresa

[Guest guest]

My daughter sounds very similar to your son. Nisha is 4yr left hemi cp and

seizures but not missed a milestone. I want to tell you honestly that this is a

life long journey and the brain does not heal easily. If you are ready to hear

the intensive therapies we have done let me know. The younger you start the more

function your son will be able to gain. Not using a limb causes it to not grow

that happens fast. Neglecting an arm makes it difficult to get dressed,opening

things and hanging from monkey bars. Know accepting this condition and loving

you fun active little boy is ok. Nisha is a great little girl and has taught me

more then I have taught her. You can email anytime.

Diane

-----OriginalMessage-----

Date: Wednesday, February 23, 2011 5:58:09 pm

To: polymicrogyria

Subject: Unilateral Polymicrogyria

My son, who is now 15 months old, was diagnosed with Unilateral Polymicrogyria

at 7 months old. I am just on here looking for other people who have the same

condition and how they have turned out. My son, thankfully, only has signs like

tightness in the left hand and he doesn't use his left hand/arm very much and is

still not walking because his balance is not what it should be at this age. His

is on his right side of his brain, therefore it affects the left side of his

body. His speech (as far as I can tell) is good, so I am not too worried about

that. I just hope that someday after therapy and working with him that no one

will ever be able to tell. We had genetic testing and after everything coming

back negative they are pretty sure that it was my thyroid that caused this to

happen. I thought that all the things I was feeling was just because I was

pregnant, but it turns out my thyroid was not working. I have only told a few

people about my son because I don't want him to be labeled as " the kid with PGM "

I

[Guest guest]

Our daughter Grace was diagnosed with Unilateral PMG (left side) at 15 months.

She was a delayed walker (2.5 yr old) and has always been very tight and fisted

on her right side. We began PT and 0T at age 7 months and she has been

receiving therapy 6x a week ever since. We also have tried ongoing restraint

therapy, horse therapy, swimming, osteopathy, and homeopathy...all of which have

been so helpful. She is now 6 years old and is doing very well in main stream

kindergarten. She still struggles with fine motor skills on her right side and

certain life skills. But for the most part, she is a very happy, sweet and

bright little girl who loves to dance, sing and draw!

We also get EEG's every six months, which had always been fairly normal until

about a year ago. Her EEG's showed a significant increase in activity (mostly

at night) and our neurologist felt that it would be best to start her on a low

dose of Keppra. We reluctantly agreed for two reasons...to avoid any

developmental delays due to the nightly activity and to prevent future seizures.

So far Grace is doing well on Keppra (along with vitamin B6 and Inositol) and

has not had any seizures to our knowledge...although she could be having them in

her sleep. The most recent concern is a slight regression with her speech,

which has never really been an issue for her. We are wondering if this could be

due to the possible " sleep seizures " or some kind of side effect of the Keppra?

We are due to revisit our neuro for an EEG next month and have always started

speech therapy.

Diane, thank you for your story. I would love to know more about the intense

therapies or different approaches where you have had success! I agree with you

on every level :)Thanks!

> To: polymicrogyria

> From: deszone25@...

> Date: Thu, 24 Feb 2011 01:03:21 +0000

> Subject: RE: Unilateral Polymicrogyria

>

> My daughter sounds very similar to your son. Nisha is 4yr left hemi cp and

seizures but not missed a milestone. I want to tell you honestly that this is a

life long journey and the brain does not heal easily. If you are ready to hear

the intensive therapies we have done let me know. The younger you start the more

function your son will be able to gain. Not using a limb causes it to not grow

that happens fast. Neglecting an arm makes it difficult to get dressed,opening

things and hanging from monkey bars. Know accepting this condition and loving

you fun active little boy is ok. Nisha is a great little girl and has taught me

more then I have taught her. You can email anytime.

> Diane

>

> -----OriginalMessage-----

> Date: Wednesday, February 23, 2011 5:58:09 pm

> To: polymicrogyria

>

> Subject: Unilateral Polymicrogyria

>

> My son, who is now 15 months old, was diagnosed with Unilateral Polymicrogyria

at 7 months old. I am just on here looking for other people who have the same

condition and how they have turned out. My son, thankfully, only has signs like

tightness in the left hand and he doesn't use his left hand/arm very much and is

still not walking because his balance is not what it should be at this age. His

is on his right side of his brain, therefore it affects the left side of his

body. His speech (as far as I can tell) is good, so I am not too worried about

that. I just hope that someday after therapy and working with him that no one

will ever be able to tell. We had genetic testing and after everything coming

back negative they are pretty sure that it was my thyroid that caused this to

happen. I thought that all the things I was feeling was just because I was

pregnant, but it turns out my thyroid was not working. I have only told a few

people about my son because I don't want him to be labeled as " the kid with PGM "

I

>

>

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

>

>

[Guest guest]

Hi, I have a question,, My daughter Hayden almost 2 also has unilateral PMG but

right sided.. she does not walk and is trying really hard to crawl now.. doing

more of a army crawl. but my question is about the b6 you give your daughter..

is it liquid?? how much do you give her and what does she weigh?

my daughter is on keppra and i have noticed her behavior changes and have heard

B6 helps and have asked docs and nobody seems to care.

>

>

> Our daughter Grace was diagnosed with Unilateral PMG (left side) at 15 months.

She was a delayed walker (2.5 yr old) and has always been very tight and fisted

on her right side. We began PT and 0T at age 7 months and she has been

receiving therapy 6x a week ever since. We also have tried ongoing restraint

therapy, horse therapy, swimming, osteopathy, and homeopathy...all of which have

been so helpful. She is now 6 years old and is doing very well in main stream

kindergarten. She still struggles with fine motor skills on her right side and

certain life skills. But for the most part, she is a very happy, sweet and

bright little girl who loves to dance, sing and draw!

> We also get EEG's every six months, which had always been fairly normal until

about a year ago. Her EEG's showed a significant increase in activity (mostly

at night) and our neurologist felt that it would be best to start her on a low

dose of Keppra. We reluctantly agreed for two reasons...to avoid any

developmental delays due to the nightly activity and to prevent future seizures.

So far Grace is doing well on Keppra (along with vitamin B6 and Inositol) and

has not had any seizures to our knowledge...although she could be having them in

her sleep. The most recent concern is a slight regression with her speech,

which has never really been an issue for her. We are wondering if this could be

due to the possible " sleep seizures " or some kind of side effect of the Keppra?

We are due to revisit our neuro for an EEG next month and have always started

speech therapy.

> Diane, thank you for your story. I would love to know more about the intense

therapies or different approaches where you have had success! I agree with you

on every level :)Thanks!

> > To: polymicrogyria

> > From: deszone25@...

> > Date: Thu, 24 Feb 2011 01:03:21 +0000

> > Subject: RE: Unilateral Polymicrogyria

> >

> > My daughter sounds very similar to your son. Nisha is 4yr left hemi cp and

seizures but not missed a milestone. I want to tell you honestly that this is a

life long journey and the brain does not heal easily. If you are ready to hear

the intensive therapies we have done let me know. The younger you start the more

function your son will be able to gain. Not using a limb causes it to not grow

that happens fast. Neglecting an arm makes it difficult to get dressed,opening

things and hanging from monkey bars. Know accepting this condition and loving

you fun active little boy is ok. Nisha is a great little girl and has taught me

more then I have taught her. You can email anytime.

> > Diane

> >

> > -----OriginalMessage-----

> > Date: Wednesday, February 23, 2011 5:58:09 pm

> > To: polymicrogyria

> >

> > Subject: Unilateral Polymicrogyria

> >

> > My son, who is now 15 months old, was diagnosed with Unilateral

Polymicrogyria at 7 months old. I am just on here looking for other people who

have the same condition and how they have turned out. My son, thankfully, only

has signs like tightness in the left hand and he doesn't use his left hand/arm

very much and is still not walking because his balance is not what it should be

at this age. His is on his right side of his brain, therefore it affects the

left side of his body. His speech (as far as I can tell) is good, so I am not

too worried about that. I just hope that someday after therapy and working with

him that no one will ever be able to tell. We had genetic testing and after

everything coming back negative they are pretty sure that it was my thyroid that

caused this to happen. I thought that all the things I was feeling was just

because I was pregnant, but it turns out my thyroid was not working. I have only

told a few people about my son because I don't want him to be labeled as " the

kid with PGM " I

> >

> >

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

> >

> >

[Guest guest]

My daughter Hayden has PMG right sided affecting her left of course. she is

going to be two in april. she does not walk nor crawl but is attempting an army

crawl. she had her first seizure in oct. of last yr.. i was hoping they would

never come! she is pretty well controlled on keppra with her seizures. but

considering your daughter has pmg.. be careful when she is sick.. last month my

daughter had 4 break through seizures due to being sick..seizures usually come

hand in hand with pmg and it is very important to watch out for fevers. any

ways Hayden scoots on her butt everywhere and does 360's.. its so cute. she is

always so happy. she does 4 therapy's a week.. OT,PT,DT,SP.. she only says

baba. she is trying hard to say others but nothing yet and we are unsure of

what she might be able to say. we also are having some trouble with leg length

and hearing probs.. any other questions feel free to ask.

>

> My son, who is now 15 months old, was diagnosed with Unilateral Polymicrogyria

at 7 months old. I am just on here looking for other people who have the same

condition and how they have turned out. My son, thankfully, only has signs like

tightness in the left hand and he doesn't use his left hand/arm very much and is

still not walking because his balance is not what it should be at this age. His

is on his right side of his brain, therefore it affects the left side of his

body. His speech (as far as I can tell) is good, so I am not too worried about

that. I just hope that someday after therapy and working with him that no one

will ever be able to tell. We had genetic testing and after everything coming

back negative they are pretty sure that it was my thyroid that caused this to

happen. I thought that all the things I was feeling was just because I was

pregnant, but it turns out my thyroid was not working. I have only told a few

people about my son because I don't want him to be labeled as " the kid with PGM "

I want people to see him for the happy little boy that I see. His doctor has

said that unless someone has dealt with this, they probably wouldn't notice.

Anyways, I am just looking for information on the outcome of people who have

gone through this. I appreciate any information that can be given for me to

better understand this.

>

> Thanks

>

[Guest guest]

My son has left side unilateral PMG and he is now almost 14 years old. He was

diagnosed at about 7 months old. He developed almost completely normally meeting

all milestones except for those that require fine motor skills with both hands.

I don't want to scare you but everything was going great and we thought our son

would live a " normal " life with some mild handicaps but that all changed when

the seizures started at about age 5. His development slowed down, then stagnated

and finally he regressed. The seizure disorders associated with unilateral PMG

are generally hard to control and cause cognitive delays and regression. I would

advise you to do research on this and to be prepared if your son starts having

seizures. Treatment needs to be quick, aggressive and appropriate. This is going

to be your biggest challenge. Hopefully, you will never have to deal with this.

Steve

>

> My son, who is now 15 months old, was diagnosed with Unilateral Polymicrogyria

at 7 months old. I am just on here looking for other people who have the same

condition and how they have turned out. My son, thankfully, only has signs like

tightness in the left hand and he doesn't use his left hand/arm very much and is

still not walking because his balance is not what it should be at this age. His

is on his right side of his brain, therefore it affects the left side of his

body. His speech (as far as I can tell) is good, so I am not too worried about

that. I just hope that someday after therapy and working with him that no one

will ever be able to tell. We had genetic testing and after everything coming

back negative they are pretty sure that it was my thyroid that caused this to

happen. I thought that all the things I was feeling was just because I was

pregnant, but it turns out my thyroid was not working. I have only told a few

people about my son because I don't want him to be labeled as " the kid with PGM "

I want people to see him for the happy little boy that I see. His doctor has

said that unless someone has dealt with this, they probably wouldn't notice.

Anyways, I am just looking for information on the outcome of people who have

gone through this. I appreciate any information that can be given for me to

better understand this.

>

> Thanks

>

[Guest guest]

Hi,

I'm curious about the doctor's telling you it was your hypothyroidism that

caused your baby's condition.....how sure of this were they? Or was it just a

possible cause because they found nothing else?

We have just started genetic testing for my daughter's Lissencephaly (similar to

PMG). And I had the same experience of untreated hypothyroid during the

pregnancy. We have two older typical children.

My other thought for our daughter's condition is exposure to Chicken Pox for a

month in the first trimester of the pregnancy.

Don't be afraid of your child being labeled. NO child is picture perfect. Just

concentrate on getting him every service/therapy available, the sooner, the

better. It is a remarkable journey that we take raising our kids.

Have a great day!

(mom to Rose, 10 yr old with Liss., Newark, Ohio)

>

> My son, who is now 15 months old, was diagnosed with Unilateral Polymicrogyria

at 7 months old. I am just on here looking for other people who have the same

condition and how they have turned out. My son, thankfully, only has signs like

tightness in the left hand and he doesn't use his left hand/arm very much and is

still not walking because his balance is not what it should be at this age. His

is on his right side of his brain, therefore it affects the left side of his

body. His speech (as far as I can tell) is good, so I am not too worried about

that. I just hope that someday after therapy and working with him that no one

will ever be able to tell. We had genetic testing and after everything coming

back negative they are pretty sure that it was my thyroid that caused this to

happen. I thought that all the things I was feeling was just because I was

pregnant, but it turns out my thyroid was not working. I have only told a few

people about my son because I don't want him to be labeled as " the kid with PGM "

I want people to see him for the happy little boy that I see. His doctor has

said that unless someone has dealt with this, they probably wouldn't notice.

Anyways, I am just looking for information on the outcome of people who have

gone through this. I appreciate any information that can be given for me to

better understand this.

>

> Thanks

>

[Guest guest]

Our daughter is almost 8 and has had multiple manifestations with her

unilateral pmg: left sided weakness, poor balance, learning

differences, Asperger's syndrome, seizures. We've done a lot of

interventions and you are welcome to e-mail directly should you be

interested in hearing more about them. However, she is in a mainstream

classroom with accommodations thus far and is relatively high

functioning. One thing to bear in mind is that we are all the same ,

yet we are all different based on the location and extent of the PMG.

So, use all of our experiences as a generalization because your child

will have their own individual experience and prognosis.

> My daughter sounds very similar to your son. Nisha is 4yr left hemi cp and

seizures but not missed a milestone. I want to tell you honestly that this is a

life long journey and the brain does not heal easily. If you are ready to hear

the intensive therapies we have done let me know. The younger you start the more

function your son will be able to gain. Not using a limb causes it to not grow

that happens fast. Neglecting an arm makes it difficult to get dressed,opening

things and hanging from monkey bars. Know accepting this condition and loving

you fun active little boy is ok. Nisha is a great little girl and has taught me

more then I have taught her. You can email anytime.

> Diane

>

> -----OriginalMessage-----

> Date: Wednesday, February 23, 2011 5:58:09 pm

> To: polymicrogyria

>

> Subject: Unilateral Polymicrogyria

>

> My son, who is now 15 months old, was diagnosed with Unilateral Polymicrogyria

at 7 months old. I am just on here looking for other people who have the same

condition and how they have turned out. My son, thankfully, only has signs like

tightness in the left hand and he doesn't use his left hand/arm very much and is

still not walking because his balance is not what it should be at this age. His

is on his right side of his brain, therefore it affects the left side of his

body. His speech (as far as I can tell) is good, so I am not too worried about

that. I just hope that someday after therapy and working with him that no one

will ever be able to tell. We had genetic testing and after everything coming

back negative they are pretty sure that it was my thyroid that caused this to

happen. I thought that all the things I was feeling was just because I was

pregnant, but it turns out my thyroid was not working. I have only told a few

people about my son because I don't want him to be labeled as " the kid with PGM "

I

>

>

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

>

>

[Guest guest]

Hi,

They are not sure that it is my hypothyroidism that caused it, but they did

genetic testings and nothing came back on any of those. They haven't found an

answer so they just guessed that it was hypothyroidism. Although there is no way

to tell for sure, but the fact the my son has such a mild form makes them

believe that it very well could have been something like that. I didn't realize

I had hypothyroidism until after I had my son and my levels were at 25 (normal

is 0-4, which I'm sure you know)and the doctor said that if my levels were that

high in the first trimester it could have very well done this to him. I may

never know exactly why and it doesn't really matter except that we want more

kids, so I guess I kinda hope it was my thyroid, because that I can control.

And as for my kid being labeled, I just want him to be seen for who he is, not

what he has. And I don't want people to treat him differently.

Did you realize you had hypothyroidism after you had your daughter?

Devon

> >

> > My son, who is now 15 months old, was diagnosed with Unilateral

Polymicrogyria at 7 months old. I am just on here looking for other people who

have the same condition and how they have turned out. My son, thankfully, only

has signs like tightness in the left hand and he doesn't use his left hand/arm

very much and is still not walking because his balance is not what it should be

at this age. His is on his right side of his brain, therefore it affects the

left side of his body. His speech (as far as I can tell) is good, so I am not

too worried about that. I just hope that someday after therapy and working with

him that no one will ever be able to tell. We had genetic testing and after

everything coming back negative they are pretty sure that it was my thyroid that

caused this to happen. I thought that all the things I was feeling was just

because I was pregnant, but it turns out my thyroid was not working. I have only

told a few people about my son because I don't want him to be labeled as " the

kid with PGM " I want people to see him for the happy little boy that I see. His

doctor has said that unless someone has dealt with this, they probably wouldn't

notice. Anyways, I am just looking for information on the outcome of people who

have gone through this. I appreciate any information that can be given for me to

better understand this.

> >

> > Thanks

> >

>

[Guest guest]

Steve were you able to get control of the seizures?

Diane

Re: Unilateral Polymicrogyria

My son has left side unilateral PMG and he is now almost 14 years old. He was

diagnosed at about 7 months old. He developed almost completely normally meeting

all milestones except for those that require fine motor skills with both hands.

I don't want to scare you but everything was going great and we thought our son

would live a " normal " life with some mild handicaps but that all changed when

the seizures started at about age 5. His development slowed down, then stagnated

and finally he regressed. The seizure disorders associated with unilateral PMG

are generally hard to control and cause cognitive delays and regression. I would

advise you to do research on this and to be prepared if your son starts having

seizures. Treatment needs to be quick, aggressive and appropriate. This is going

to be your biggest challenge. Hopefully, you will never have to deal with this.

Steve

>

> My son, who is now 15 months