Re: (unknown)

[Guest guest]

Depending on the location of the PMG your child will have different

outward physical manifestations (i.e. our daughter had/has delayed motor

skills but her PMG is on the right side of the brain so her left side if

most affected.) Our daughter had this prior to having any evidence of

seizure (we had late onset seizures at 7 years of age.) Early

Childhood Intervention and PT/OT can help a lot with developing your

child to her full potential.

>

> Hi, this is Lina. I have a 7 months old daughter who was diagnosed

> with PMG she was born with seizures disorder and taking medications to

> control it. Keppra and Tegritol, the seizures are partly controlled

> but still happening every once and a while I don't know why. Her

> development in normal to her age but I feel that she is not strong

> enough and she is not holding herself as most babies on her age. Could

> this be related to the medications or the PMG itself?

>

> Best Regards,

> Lina Kurdi

>

>

[Guest guest]

Lina,

Sorry it took a bit to get back to you.  He is in a preschool program that is a

combination class with children needing therapies and some not.  He is doing

well and very much enjoys going.  He recieves PT, OT, speech/ language, vision

and special education while he is there (we also go to private therapies outside

of school).  If you are asking how he does cognitively, it is a bit hard to

fully explain.  It is becoming apparent that he has some difficulties with

learning.  He is 4 and is unable to identify colors/ shapes, tell you how old

he is and so on.  When I say it is hard to explain, I mean that there are some

things that I don't feel he is too far behind for his age, but is like a 2 year

old in other areas. 

>

>

> Subject: (unknown)

> To: " polymicrogyria " <polymicrogyria >

> Date: Wednesday, June 1, 2011, 8:33 AM

>

>

>

> Hi, this is Lina. I have a 7 months old daughter who was diagnosed with PMG

she was born with seizures disorder and taking medications to control it. Keppra

and Tegritol, the seizures are partly controlled but still happening every once

and a while I don't know why. Her development in normal to her age but I feel

that she is not strong enough and she is not holding herself as most babies on

her age. Could this be related to the medications or the PMG itself?

>

> Best Regards,

> Lina Kurdi

>

>

[Guest guest]

Hi Deb

My name is Kat and I'm from NZ so probably alot closer than most of us on here.

I was so happy to come across this website and to know there are others out

there.

My girl is 1 year old next week and we found out at 11wks she has left sided

PMG, she developed seizures an at early age.. We have had the ACTH treatment for

them and have been lucky enough to be seizure free for 3mths now. During this

time we have been working on her development, she also does not hold her head up

or sit up yet either. But it sounds like you and your daughter are doing the

right things for your girl, therapy and lots exercises, stretching and

stimulation overall is the key, and getting the support from the professionals

you need.

we are lucky here to have a play centre that focus's on children that need extra

help, the therapist works with our girl weekly one on one and gives us exercises

to work on at home. We also used finger splits for a few months and now she does

not need them.

My advice to you is keep doing what you are doing, lots of love, time and

therapy is what gets our kids through.

Sorry I couldn't offer much more advice, but just wanted you to know we are here

  Some of the ladies on her have good ideas about therapy as they have older

children so may be able to offer some better ideas.

Good luck to you and your family.

Kat

________________________________

To: " polymicrogyria " <polymicrogyria >

Sent: Thursday, 1 September 2011 2:53 PM

Subject: (unknown)

 

My name is Deb and I live in Melbourne, Australia.  My grandson was diagnosed

with unilateral polymicrogyria the day before his first birthday. My daughter

and i knew something was up at around 6 weeks of age, because he was born at

33weeks they kept telling us it was because he was premature that he was behind

in most milestones.  He had his mri on 1/8/11 and we got the diagnosis 10

days later. He cannot sit up by himself, his left arm & leg are floppy hence

the unilateral diagnosis, basically his left brain is normal and we are

currently attending physiotherapy, occupational therapy, speech therapy.  He

was fitted yesterday for a handsplint to wear at night to stop his hand and

fingers contracting so that he wont need botox for a while.  There are no

support groups that we can find in Australia, we have only one specialist so

cannot even get second opinion on treatment. Is anyone doing anything

different?? I just want the best for my grandson.

My daughter has been coping well, she is doing a wonderful job. 

[Guest guest]

Hello everyone,

My daughter was diagnosed with right side of the brain PMG, we discovered this

when she was only 2 weeks of age. She had seizures on z first 24 hours when she

was born, she was taking two medic. And we lived happily with no seizures for 3

months after that everything changed seizures became more aggressive and for at

least 15 times per day.

Now she is taking five med. and she still having seizures, am writing this while

I am n z hospital and so frustrated and don't know what is the next step!! The

doctor is suggesting surgery to remove the affected part of the brain. Have

anyone tried such a surgery?? Kindly advice!

Best Regards,

Lina Kurdi

> Hi Deb

>

> My name is Kat and I'm from NZ so probably alot closer than most of us on

here. I was so happy to come across this website and to know there are others

out there.

>

> My girl is 1 year old next week and we found out at 11wks she has left sided

PMG, she developed seizures an at early age.. We have had the ACTH treatment for

them and have been lucky enough to be seizure free for 3mths now. During this

time we have been working on her development, she also does not hold her head up

or sit up yet either. But it sounds like you and your daughter are doing the

right things for your girl, therapy and lots exercises, stretching and

stimulation overall is the key, and getting the support from the professionals

you need.

>

> we are lucky here to have a play centre that focus's on children that need

extra help, the therapist works with our girl weekly one on one and gives us

exercises to work on at home. We also used finger splits for a few months and

now she does not need them.

>

> My advice to you is keep doing what you are doing, lots of love, time and

therapy is what gets our kids through.

>

> Sorry I couldn't offer much more advice, but just wanted you to know we are

here Some of the ladies on her have good ideas about therapy as they have

older children so may be able to offer some better ideas.

>

> Good luck to you and your family.

> Kat

>

> ________________________________

>

> To: " polymicrogyria " <polymicrogyria >

> Sent: Thursday, 1 September 2011 2:53 PM

> Subject: (unknown)

>

>

>

> My name is Deb and I live in Melbourne, Australia. My grandson was diagnosed

with unilateral polymicrogyria the day before his first birthday. My daughter

and i knew something was up at around 6 weeks of age, because he was born at

33weeks they kept telling us it was because he was premature that he was behind

in most milestones. He had his mri on 1/8/11 and we got the diagnosis 10 days

later. He cannot sit up by himself, his left arm & leg are floppy hence the

unilateral diagnosis, basically his left brain is normal and we are currently

attending physiotherapy, occupational therapy, speech therapy. He was fitted

yesterday for a handsplint to wear at night to stop his hand and fingers

contracting so that he wont need botox for a while. There are no support groups

that we can find in Australia, we have only one specialist so cannot even get

second opinion on treatment. Is anyone doing anything different?? I just want

the best for my grandson.

> My daughter has been coping well, she is doing a wonderful job.

>

>

[Guest guest]

If anybody tried it kindly advice me where is the best place/ country to do it.

Am from Jeddah, Saudi Arabia.

Best Regards,

Lina Kurdi

Mother of beautiful baby Lana

> Hello everyone,

> My daughter was diagnosed with right side of the brain PMG, we discovered this

when she was only 2 weeks of age. She had seizures on z first 24 hours when she

was born, she was taking two medic. And we lived happily with no seizures for 3

months after that everything changed seizures became more aggressive and for at

least 15 times per day.

> Now she is taking five med. and she still having seizures, am writing this

while I am n z hospital and so frustrated and don't know what is the next step!!

The doctor is suggesting surgery to remove the affected part of the brain. Have

anyone tried such a surgery?? Kindly advice!

>

> Best Regards,

> Lina Kurdi

>

>

>

> > Hi Deb

> >

> > My name is Kat and I'm from NZ so probably alot closer than most of us on

here. I was so happy to come across this website and to know there are others

out there.

> >

> > My girl is 1 year old next week and we found out at 11wks she has left sided

PMG, she developed seizures an at early age.. We have had the ACTH treatment for

them and have been lucky enough to be seizure free for 3mths now. During this

time we have been working on her development, she also does not hold her head up

or sit up yet either. But it sounds like you and your daughter are doing the

right things for your girl, therapy and lots exercises, stretching and

stimulation overall is the key, and getting the support from the professionals

you need.

> >

> > we are lucky here to have a play centre that focus's on children that need

extra help, the therapist works with our girl weekly one on one and gives us

exercises to work on at home. We also used finger splits for a few months and

now she does not need them.

> >

> > My advice to you is keep doing what you are doing, lots of love, time and

therapy is what gets our kids through.

> >

> > Sorry I couldn't offer much more advice, but just wanted you to know we are

here Some of the ladies on her have good ideas about therapy as they have

older children so may be able to offer some better ideas.

> >

> > Good luck to you and your family.

> > Kat

> >

> > ________________________________

> >

> > To: " polymicrogyria " <polymicrogyria >

> > Sent: Thursday, 1 September 2011 2:53 PM

> > Subject: (unknown)

> >

> >

> >

> > My name is Deb and I live in Melbourne, Australia. My grandson was diagnosed

with unilateral polymicrogyria the day before his first birthday. My daughter

and i knew something was up at around 6 weeks of age, because he was born at

33weeks they kept telling us it was because he was premature that he was behind

in most milestones. He had his mri on 1/8/11 and we got the diagnosis 10 days

later. He cannot sit up by himself, his left arm & leg are floppy hence the

unilateral diagnosis, basically his left brain is normal and we are currently

attending physiotherapy, occupational therapy, speech therapy. He was fitted

yesterday for a handsplint to wear at night to stop his hand and fingers

contracting so that he wont need botox for a while. There are no support groups

that we can find in Australia, we have only one specialist so cannot even get

second opinion on treatment. Is anyone doing anything different?? I just want

the best for my grandson.

> > My daughter has been coping well, she is doing a wonderful job.

> >

> >

[Guest guest]

HI Lina,

I am not a doctor but I would be very wary of so many medications for such a

little person! There are good specialists here in the US, could you come here,

by any chance? Dr. Dobyns in Seattle, and Dr. Devinsky at NYU in New York City

are two good specialists in polymicrogyria and seizures. In general, the

medications Vigabitrin and ACTH are used for infantile spasm. Is that the kind

of seizure your daughter is having? Surgery seems like a last option, to me,

given Lana's age, but that is just my opinion. I am sorry for your stress and

worry, and sure all of us on this list serve can really understand!

Good luck!

Thea

(unknown)

>

>

>

> My name is Deb and I live in Melbourne, Australia. My grandson was diagnosed

with unilateral polymicrogyria the day before his first birthday. My daughter

and i knew something was up at around 6 weeks of age, because he was born at

33weeks they kept telling us it was because he was premature that he was behind

in most milestones. He had his mri on 1/8/11 and we got the diagnosis 10 days

later. He cannot sit up by himself, his left arm & leg are floppy hence the

unilateral diagnosis, basically his left brain is normal and we are currently

attending physiotherapy, occupational therapy, speech therapy. He was fitted

yesterday for a handsplint to wear at night to stop his hand and fingers

contracting so that he wont need botox for a while. There are no support groups

that we can find in Australia, we have only one specialist so cannot even get

second opinion on treatment. Is anyone doing anything different?? I just want

the best for my grandson.

> My daughter has been coping well, she is doing a wonderful job.

>

>

[Guest guest]

I am currently looking into surgery at Cleveland Clinic Dr. Bingaman. He has a

very good reputation. You can do a review not in person for 700$. The area

causing the seizures has to be consistent or focal in different testing. My

neurologist said that it is much better if done before the age of 4.

Diane

CC: polymicrogyria

To: polymicrogyria

From: sweet.kurdi@...

Date: Thu, 1 Sep 2011 13:02:35 +0300

Subject: Re: (unknown)

Hello everyone,

My daughter was diagnosed with right side of the brain PMG, we discovered this

when she was only 2 weeks of age. She had seizures on z first 24 hours when she

was born, she was taking two medic. And we lived happily with no seizures for 3

months after that everything changed seizures became more aggressive and for at

least 15 times per day.

Now she is taking five med. and she still having seizures, am writing this while

I am n z hospital and so frustrated and don't know what is the next step!! The

doctor is suggesting surgery to remove the affected part of the brain. Have

anyone tried such a surgery?? Kindly advice!

Best Regards,

Lina Kurdi

> Hi Deb

>

> My name is Kat and I'm from NZ so probably alot closer than most of us on

here. I was so happy to come across this website and to know there are others

out there.

>

> My girl is 1 year old next week and we found out at 11wks she has left sided

PMG, she developed seizures an at early age.. We have had the ACTH treatment for

them and have been lucky enough to be seizure free for 3mths now. During this

time we have been working on her development, she also does not hold her head up

or sit up yet either. But it sounds like you and your daughter are doing the

right things for your girl, therapy and lots exercises, stretching and

stimulation overall is the key, and getting the support from the professionals

you need.

>

> we are lucky here to have a play centre that focus's on children that need

extra help, the therapist works with our girl weekly one on one and gives us

exercises to work on at home. We also used finger splits for a few months and

now she does not need them.

>

> My advice to you is keep doing what you are doing, lots of love, time and

therapy is what gets our kids through.

>

> Sorry I couldn't offer much more advice, but just wanted you to know we are

here Some of the ladies on her have good ideas about therapy as they have

older children so may be able to offer some better ideas.

>

> Good luck to you and your family.

> Kat

>

> ________________________________

>

> To: " polymicrogyria " <polymicrogyria >

> Sent: Thursday, 1 September 2011 2:53 PM

> Subject: (unknown)

>

>

>

> My name is Deb and I live in Melbourne, Australia. My grandson was diagnosed

with unilateral polymicrogyria the day before his first birthday. My daughter

and i knew something was up at around 6 weeks of age, because he was born at

33weeks they kept telling us it was because he was premature that he was behind

in most milestones. He had his mri on 1/8/11 and we got the diagnosis 10 days

later. He cannot sit up by himself, his left arm & leg are floppy hence the

unilateral diagnosis, basically his left brain is normal and we are currently

attending physiotherapy, occupational therapy, speech therapy. He was fitted

yesterday for a handsplint to wear at night to stop his hand and fingers

contracting so that he wont need botox for a while. There are no support groups

that we can find in Australia, we have only one specialist so cannot even get

second opinion on treatment. Is anyone doing anything different?? I just want

the best for my grandson.

> My daughter has been coping well, she is doing a wonderful job.

>

>

[Guest guest]

Deb, It sounds like your daughter is doing a good job it is difficult to move

from grief to helping our children. I want to tell you about a book that talks

about neuroplasticy is was very helpful to me The Brain that Changes Itself. It

is a good concepts to be aware of when helping rehab and the importance of early

muscle training and awareness . The second thing that has helped me so much is

when one side has weak or tight muscles it is called hemiparesis since the right

side of the brain is damaged it is left hemiparesis cerebral palsy. Their is an

international group by CHASA Children with Hemi and Stroke Association

http://www.chasa.org/. They have an active list serve 20 emails a day of 17000

parents asking question and sharing. You can also search the archives. This is

the list serve:

http://www.hemikids.org/ I am sure their are several parents from Australia.

CHASA is also trying to get lists of local support of special needs kids to

share local resources. I have a local group that is very helpful too for

learning good therapy and doctors. Several of the kids on this hemi.org list

serve is PMG kids also called cerebral dysplasia or static brain lesion.

DianeTo: polymicrogyria

From: deb_hedley@...

Date: Wed, 31 Aug 2011 19:53:28 -0700

Subject: (unknown)

My name is Deb and I live in Melbourne, Australia. My grandson was diagnosed

with unilateral polymicrogyria the day before his first birthday. My daughter

and i knew something was up at around 6 weeks of age, because he was born at

33weeks they kept telling us it was because he was premature that he was behind

in most milestones. He had his mri on 1/8/11 and we got the diagnosis 10 days

later. He cannot sit up by himself, his left arm & leg are floppy hence the

unilateral diagnosis, basically his left brain is normal and we are currently

attending physiotherapy, occupational therapy, speech therapy. He was fitted

yesterday for a handsplint to wear at night to stop his hand and fingers

contracting so that he wont need botox for a while. There are no support groups

that we can find in Australia, we have only one specialist so cannot even get

second opinion on treatment. Is anyone doing anything different?? I just want

the best for my grandson.

My daughter has been coping well, she is doing a wonderful job.

[Guest guest]

Diane

Very helpful email.

Alison

Sent from my iPhone

>

> Deb, It sounds like your daughter is doing a good job it is difficult to move

from grief to helping our children. I want to tell you about a book that talks

about neuroplasticy is was very helpful to me The Brain that Changes Itself. It

is a good concepts to be aware of when helping rehab and the importance of early

muscle training and awareness . The second thing that has helped me so much is

when one side has weak or tight muscles it is called hemiparesis since the right

side of the brain is damaged it is left hemiparesis cerebral palsy. Their is an

international group by CHASA Children with Hemi and Stroke Association

http://www.chasa.org/. They have an active list serve 20 emails a day of 17000

parents asking question and sharing. You can also search the archives. This is

the list serve:

> http://www.hemikids.org/ I am sure their are several parents from Australia.

CHASA is also trying to get lists of local support of special needs kids to

share local resources. I have a local group that is very helpful too for

learning good therapy and doctors. Several of the kids on this hemi.org list

serve is PMG kids also called cerebral dysplasia or static brain lesion.

> DianeTo: polymicrogyria

> From: deb_hedley@...

> Date: Wed, 31 Aug 2011 19:53:28 -0700

> Subject: (unknown)

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

> My name is Deb and I live in Melbourne, Australia. My grandson was diagnosed

with unilateral polymicrogyria the day before his first birthday. My daughter

and i knew something was up at around 6 weeks of age, because he was born at

33weeks they kept telling us it was because he was premature that he was behind

in most milestones. He had his mri on 1/8/11 and we got the diagnosis 10 days

later. He cannot sit up by himself, his left arm & leg are floppy hence the

unilateral diagnosis, basically his left brain is normal and we are currently

attending physiotherapy, occupational therapy, speech therapy. He was fitted

yesterday for a handsplint to wear at night to stop his hand and fingers

contracting so that he wont need botox for a while. There are no support groups

that we can find in Australia, we have only one specialist so cannot even get

second opinion on treatment. Is anyone doing anything different?? I just want

the best for my grandson.

>

> My daughter has been coping well, she is doing a wonderful job.

>

>

>

>

[Guest guest]

I second, The Brain Changes Itself, such a Great book!

Sent from my iPad

Diane

Very helpful email.

Alison

Sent from my iPhone

>

> Deb, It sounds like your daughter is doing a good job it is difficult to move

from grief to helping our children. I want to tell you about a book that talks

about neuroplasticy is was very helpful to me The Brain that Changes Itself. It

is a good concepts to be aware of when helping rehab and the importance of early

muscle training and awareness . The second thing that has helped me so much is

when one side has weak or tight muscles it is called hemiparesis since the right

side of the brain is damaged it is left hemiparesis cerebral palsy. Their is an

international group by CHASA Children with Hemi and Stroke Association

http://www.chasa.org/. They have an active list serve 20 emails a day of 17000

parents asking question and sharing. You can also search the archives. This is

the list serve:

> http://www.hemikids.org/ I am sure their are several parents from Australia.

CHASA is also trying to get lists of local support of special needs kids to

share local resources. I have a local group that is very helpful too for

learning good therapy and doctors. Several of the kids on this hemi.org list

serve is PMG kids also called cerebral dysplasia or static brain lesion.

> DianeTo: polymicrogyria

> From: deb_hedley@...

> Date: Wed, 31 Aug 2011 19:53:28 -0700

> Subject: (unknown)

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

> My name is Deb and I live in Melbourne, Australia. My grandson was diagnosed

with unilateral polymicrogyria the day before his first birthday. My daughter

and i knew something was up at around 6 weeks of age, because he was born at

33weeks they kept telling us it was because he was premature that he was behind

in most milestones. He had his mri on 1/8/11 and we got the diagnosis 10 days

later. He cannot sit up by himself, his left arm & leg are floppy hence the

unilateral diagnosis, basically his left brain is normal and we are currently

attending physiotherapy, occupational therapy, speech therapy. He was fitted

yesterday for a handsplint to wear at night to stop his hand and fingers

contracting so that he wont need botox for a while. There are no support groups

that we can find in Australia, we have only one specialist so cannot even get

second opinion on treatment. Is anyone doing anything different?? I just want

the best for my grandson.

>

> My daughter has been coping well, she is doing a wonderful job.

>

>

>

>

[Guest guest]

Alison,

I had difficulty getting services for PMG but once everything said left hemi cp

thanks to the physiatrist I got help so much easier. Therapist suddenly know

what my daughter will needed. It just gives them the picture easier. I am not

sure that it is too different than a stroke either.

Diane

Re: (unknown)

I second, The Brain Changes Itself, such a Great book!

Sent from my iPad

Diane

Very helpful email.

Alison

Sent from my iPhone

>

> Deb, It sounds like your daughter is doing a good job it is difficult to move

from grief to helping our children. I want to tell you about a book that talks

about neuroplasticy is was very helpful to me The Brain that Changes Itself. It

is a good concepts to be aware of when helping rehab and the importance of early

muscle training and awareness . The second thing that has helped me so much is

when one side has weak or tight muscles it is called hemiparesis since the right

side of the brain is damaged it is left hemiparesis cerebral palsy. Their is an

international group by CHASA Children with Hemi and Stroke Association

http://www.chasa.org/. They have an active list serve 20 emails a day of 17000

parents asking question and sharin

[Guest guest]

I was told PMG was the finding on the MRI , for the diagnosis is RH CP. Anytime

I am asked what the diagnosis is I say CP if they say why.. Then I tell them.

Sent from my iPhone

> Alison,

> I had difficulty getting services for PMG but once everything said left hemi

cp thanks to the physiatrist I got help so much easier. Therapist suddenly know

what my daughter will needed. It just gives them the picture easier. I am not

sure that it is too different than a stroke either.

>

> Diane

> Re: (unknown)

>

> I second, The Brain Changes Itself, such a Great book!

>

> Sent from my iPad

>

>

>

> Diane

> Very helpful email.

> Alison

>

> Sent from my iPhone

>

>

>

>>

>> Deb, It sounds like your daughter is doing a good job it is difficult to move

from grief to helping our children. I want to tell you about a book that talks

about neuroplasticy is was very helpful to me The Brain that Changes Itself. It

is a good concepts to be aware of when helping rehab and the importance of early

muscle training and awareness . The second thing that has helped me so much is

when one side has weak or tight muscles it is called hemiparesis since the right

side of the brain is damaged it is left hemiparesis cerebral palsy. Their is an

international group by CHASA Children with Hemi and Stroke Association

http://www.chasa.org/. They have an active list serve 20 emails a day of 17000

parents asking question and sharin

>

>

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

>

>

[Guest guest]

Diane

My daughter had surgery with Dr. Bingaman 3 weeks ago. If you'd like to get in

touch with me send me a message.

Sent from my iPhone

>

> I am currently looking into surgery at Cleveland Clinic Dr. Bingaman. He has a

very good reputation. You can do a review not in person for 700$. The area

causing the seizures has to be consistent or focal in different testing. My

neurologist said that it is much better if done before the age of 4.

> Diane

> CC: polymicrogyria

> To: polymicrogyria

> From: sweet.kurdi@...

> Date: Thu, 1 Sep 2011 13:02:35 +0300

> Subject: Re: (unknown)

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

> Hello everyone,

>

> My daughter was diagnosed with right side of the brain PMG, we discovered this

when she was only 2 weeks of age. She had seizures on z first 24 hours when she

was born, she was taking two medic. And we lived happily with no seizures for 3

months after that everything changed seizures became more aggressive and for at

least 15 times per day.

>

> Now she is taking five med. and she still having seizures, am writing this

while I am n z hospital and so frustrated and don't know what is the next step!!

The doctor is suggesting surgery to remove the affected part of the brain. Have

anyone tried such a surgery?? Kindly advice!

>

>

>

> Best Regards,

>

> Lina Kurdi

>

>

>

>

>

>

>

>> Hi Deb

>

>>

>

>> My name is Kat and I'm from NZ so probably alot closer than most of us on

here. I was so happy to come across this website and to know there are others

out there.

>

>>

>

>> My girl is 1 year old next week and we found out at 11wks she has left sided

PMG, she developed seizures an at early age.. We have had the ACTH treatment for

them and have been lucky enough to be seizure free for 3mths now. During this

time we have been working on her development, she also does not hold her head up

or sit up yet either. But it sounds like you and your daughter are doing the

right things for your girl, therapy and lots exercises, stretching and

stimulation overall is the key, and getting the support from the professionals

you need.

>

>>

>

>> we are lucky here to have a play centre that focus's on children that need

extra help, the therapist works with our girl weekly one on one and gives us

exercises to work on at home. We also used finger splits for a few months and

now she does not need them.

>

>>

>

>> My advice to you is keep doing what you are doing, lots of love, time and

therapy is what gets our kids through.

>

>>

>

>> Sorry I couldn't offer much more advice, but just wanted you to know we are

here Some of the ladies on her have good ideas about therapy as they have

older children so may be able to offer some better ideas.

>

>>

>

>> Good luck to you and your family.

>

>> Kat

>

>>

>

>> ________________________________

>

>>

>

>> To: " polymicrogyria " <polymicrogyria >

>

>> Sent: Thursday, 1 September 2011 2:53 PM

>

>> Subject: (unknown)

>

>>

>

>>

>

>>

>

>> My name is Deb and I live in Melbourne, Australia. My grandson was diagnosed

with unilateral polymicrogyria the day before his first birthday. My daughter

and i knew something was up at around 6 weeks of age, because he was born at

33weeks they kept telling us it was because he was premature that he was behind

in most milestones. He had his mri on 1/8/11 and we got the diagnosis 10 days

later. He cannot sit up by himself, his left arm & leg are floppy hence the

unilateral diagnosis, basically his left brain is normal and we are currently

attending physiotherapy, occupational therapy, speech therapy. He was fitted

yesterday for a handsplint to wear at night to stop his hand and fingers

contracting so that he wont need botox for a while. There are no support groups

that we can find in Australia, we have only one specialist so cannot even get

second opinion on treatment. Is anyone doing anything different?? I just want

the best for my grandson.

>

>> My daughter has been coping well, she is doing a wonderful job.

>

>>

>

>>

[Guest guest]

I heard of it and I really want to read it but cannot find it here, it gives

hope as I think. Right?

Best Regards,

Lina Kurdi

> I second, The Brain Changes Itself, such a Great book!

>

> Sent from my iPad

>

>

>

> Diane

> Very helpful email.

> Alison

>

> Sent from my iPhone

>

>

>

> >

> > Deb, It sounds like your daughter is doing a good job it is difficult to

move from grief to helping our children. I want to tell you about a book that

talks about neuroplasticy is was very helpful to me The Brain that Changes

Itself. It is a good concepts to be aware of when helping rehab and the

importance of early muscle training and awareness . The second thing that has

helped me so much is when one side has weak or tight muscles it is called

hemiparesis since the right side of the brain is damaged it is left hemiparesis

cerebral palsy. Their is an international group by CHASA Children with Hemi and

Stroke Association http://www.chasa.org/. They have an active list serve 20

emails a day of 17000 parents asking question and sharing. You can also search

the archives. This is the list serve:

> > http://www.hemikids.org/ I am sure their are several parents from Australia.

CHASA is also trying to get lists of local support of special needs kids to

share local resources. I have a local group that is very helpful too for

learning good therapy and doctors. Several of the kids on this hemi.org list

serve is PMG kids also called cerebral dysplasia or static brain lesion.

> > DianeTo: polymicrogyria

> > From: deb_hedley@...

> > Date: Wed, 31 Aug 2011 19:53:28 -0700

> > Subject: (unknown)

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

> > My name is Deb and I live in Melbourne, Australia. My grandson was diagnosed

with unilateral polymicrogyria the day before his first birthday. My daughter

and i knew something was up at around 6 weeks of age, because he was born at

33weeks they kept telling us it was because he was premature that he was behind

in most milestones. He had his mri on 1/8/11 and we got the diagnosis 10 days

later. He cannot sit up by himself, his left arm & leg are floppy hence the

unilateral diagnosis, basically his left brain is normal and we are currently

attending physiotherapy, occupational therapy, speech therapy. He was fitted

yesterday for a handsplint to wear at night to stop his hand and fingers

contracting so that he wont need botox for a while. There are no support groups

that we can find in Australia, we have only one specialist so cannot even get

second opinion on treatment. Is anyone doing anything different?? I just want

the best for my grandson.

> >

> > My daughter has been coping well, she is doing a wonderful job.

> >

> >

> >

> >

[Guest guest]

have they tried the ACTH medication for her seizures? We used this for our girl

and shes been seizure free for 3mths so far. They said they will come back but

will be different types, we are hoping we get some more time yet.

cheers

Kat

________________________________

To: " polymicrogyria " <polymicrogyria >

Cc: " polymicrogyria " <polymicrogyria >

Sent: Thursday, 1 September 2011 10:02 PM

Subject: Re: (unknown)

 

Hello everyone,

My daughter was diagnosed with right side of the brain PMG, we discovered this

when she was only 2 weeks of age. She had seizures on z first 24 hours when she

was born, she was taking two medic. And we lived happily with no seizures for 3

months after that everything changed seizures became more aggressive and for at

least 15 times per day.

Now she is taking five med. and she still having seizures, am writing this while

I am n z hospital and so frustrated and don't know what is the next step!! The

doctor is suggesting surgery to remove the affected part of the brain. Have

anyone tried such a surgery?? Kindly advice!

Best Regards,

Lina Kurdi

> Hi Deb

>

> My name is Kat and I'm from NZ so probably alot closer than most of us on

here. I was so happy to come across this website and to know there are others

out there.

>

> My girl is 1 year old next week and we found out at 11wks she has left sided

PMG, she developed seizures an at early age.. We have had the ACTH treatment for

them and have been lucky enough to be seizure free for 3mths now. During this

time we have been working on her development, she also does not hold her head up

or sit up yet either. But it sounds like you and your daughter are doing the

right things for your girl, therapy and lots exercises, stretching and

stimulation overall is the key, and getting the support from the professionals

you need.

>

> we are lucky here to have a play centre that focus's on children that need

extra help, the therapist works with our girl weekly one on one and gives us

exercises to work on at home. We also used finger splits for a few months and

now she does not need them.

>

> My advice to you is keep doing what you are doing, lots of love, time and

therapy is what gets our kids through.

>

> Sorry I couldn't offer much more advice, but just wanted you to know we are

here Some of the ladies on her have good ideas about therapy as they have

older children so may be able to offer some better ideas.

>

> Good luck to you and your family.

> Kat

>

> ________________________________

>

> To: " polymicrogyria " <polymicrogyria >

> Sent: Thursday, 1 September 2011 2:53 PM

> Subject: (unknown)

>

>

>

> My name is Deb and I live in Melbourne, Australia. My grandson was diagnosed

with unilateral polymicrogyria the day before his first birthday. My daughter

and i knew something was up at around 6 weeks of age, because he was born at

33weeks they kept telling us it was because he was premature that he was behind

in most milestones. He had his mri on 1/8/11 and we got the diagnosis 10 days

later. He cannot sit up by himself, his left arm & leg are floppy hence the

unilateral diagnosis, basically his left brain is normal and we are currently

attending physiotherapy, occupational therapy, speech therapy. He was fitted

yesterday for a handsplint to wear at night to stop his hand and fingers

contracting so that he wont need botox for a while. There are no support groups

that we can find in Australia, we have only one specialist so cannot even get

second opinion on treatment. Is anyone doing anything different?? I just want

the best for my grandson.

> My daughter has been coping well, she is doing a wonderful job.

>

>

[Guest guest]

What do u mean by ACTH med??

Best Regards,

Lina Kurdi

> have they tried the ACTH medication for her seizures? We used this for our

girl and shes been seizure free for 3mths so far. They said they will come back

but will be different types, we are hoping we get some more time yet.

>

> cheers

> Kat

>

> ________________________________

>

> To: " polymicrogyria " <polymicrogyria >

> Cc: " polymicrogyria " <polymicrogyria >

> Sent: Thursday, 1 September 2011 10:02 PM

> Subject: Re: (unknown)

>

>

> Hello everyone,

> My daughter was diagnosed with right side of the brain PMG, we discovered this

when she was only 2 weeks of age. She had seizures on z first 24 hours when she

was born, she was taking two medic. And we lived happily with no seizures for 3

months after that everything changed seizures became more aggressive and for at

least 15 times per day.

> Now she is taking five med. and she still having seizures, am writing this

while I am n z hospital and so frustrated and don't know what is the next step!!

The doctor is suggesting surgery to remove the affected part of the brain. Have

anyone tried such a surgery?? Kindly advice!

>

> Best Regards,

> Lina Kurdi

>

>

>

> > Hi Deb

> >

> > My name is Kat and I'm from NZ so probably alot closer than most of us on

here. I was so happy to come across this website and to know there are others

out there.

> >

> > My girl is 1 year old next week and we found out at 11wks she has left sided

PMG, she developed seizures an at early age.. We have had the ACTH treatment for

them and have been lucky enough to be seizure free for 3mths now. During this

time we have been working on her development, she also does not hold her head up

or sit up yet either. But it sounds like you and your daughter are doing the

right things for your girl, therapy and lots exercises, stretching and

stimulation overall is the key, and getting the support from the professionals

you need.

> >

> > we are lucky here to have a play centre that focus's on children that need

extra help, the therapist works with our girl weekly one on one and gives us

exercises to work on at home. We also used finger splits for a few months and

now she does not need them.

> >

> > My advice to you is keep doing what you are doing, lots of love, time and

therapy is what gets our kids through.

> >

> > Sorry I couldn't offer much more advice, but just wanted you to know we are

here Some of the ladies on her have good ideas about therapy as they have

older children so may be able to offer some better ideas.

> >

> > Good luck to you and your family.

> > Kat

> >

> > ________________________________

> >

> > To: " polymicrogyria " <polymicrogyria >

> > Sent: Thursday, 1 September 2011 2:53 PM

> > Subject: (unknown)

> >

> >

> >

> > My name is Deb and I live in Melbourne, Australia. My grandson was diagnosed

with unilateral polymicrogyria the day before his first birthday. My daughter

and i knew something was up at around 6 weeks of age, because he was born at

33weeks they kept telling us it was because he was premature that he was behind

in most milestones. He had his mri on 1/8/11 and we got the diagnosis 10 days

later. He cannot sit up by himself, his left arm & leg are floppy hence the

unilateral diagnosis, basically his left brain is normal and we are currently

attending physiotherapy, occupational therapy, speech therapy. He was fitted

yesterday for a handsplint to wear at night to stop his hand and fingers

contracting so that he wont need botox for a while. There are no support groups

that we can find in Australia, we have only one specialist so cannot even get

second opinion on treatment. Is anyone doing anything different?? I just want

the best for my grandson.

> > My daughter has been coping well, she is doing a wonderful job.

> >

> >

[Guest guest]

She is now taking 5 med.

Tegritol

Keppra

Lorazebam

Dopakin

Lamactel

Not sure about the spelling of the med.

Hope we can control them and as I told you that am still in the hospital

readjusting the medications for her. Pray for my baby.

Best Regards,

Lina

> have they tried the ACTH medication for her seizures? We used this for our

girl and shes been seizure free for 3mths so far. They said they will come back

but will be different types, we are hoping we get some more time yet.

>

> cheers

> Kat

>

> ________________________________

>

> To: " polymicrogyria " <polymicrogyria >

> Cc: " polymicrogyria " <polymicrogyria >

> Sent: Thursday, 1 September 2011 10:02 PM

> Subject: Re: (unknown)

>

>

> Hello everyone,

> My daughter was diagnosed with right side of the brain PMG, we discovered this

when she was only 2 weeks of age. She had seizures on z first 24 hours when she

was born, she was taking two medic. And we lived happily with no seizures for 3

months after that everything changed seizures became more aggressive and for at

least 15 times per day.

> Now she is taking five med. and she still having seizures, am writing this

while I am n z hospital and so frustrated and don't know what is the next step!!

The doctor is suggesting surgery to remove the affected part of the brain. Have

anyone tried such a surgery?? Kindly advice!

>

> Best Regards,

> Lina Kurdi

>

>

>

> > Hi Deb

> >

> > My name is Kat and I'm from NZ so probably alot closer than most of us on

here. I was so happy to come across this website and to know there are others

out there.

> >

> > My girl is 1 year old next week and we found out at 11wks she has left sided

PMG, she developed seizures an at early age.. We have had the ACTH treatment for

them and have been lucky enough to be seizure free for 3mths now. During this

time we have been working on her development, she also does not hold her head up

or sit up yet either. But it sounds like you and your daughter are doing the

right things for your girl, therapy and lots exercises, stretching and

stimulation overall is the key, and getting the support from the professionals

you need.

> >

> > we are lucky here to have a play centre that focus's on children that need

extra help, the therapist works with our girl weekly one on one and gives us

exercises to work on at home. We also used finger splits for a few months and

now she does not need them.

> >

> > My advice to you is keep doing what you are doing, lots of love, time and

therapy is what gets our kids through.

> >

> > Sorry I couldn't offer much more advice, but just wanted you to know we are

here Some of the ladies on her have good ideas about therapy as they have

older children so may be able to offer some better ideas.

> >

> > Good luck to you and your family.

> > Kat

> >

> > ________________________________

> >

> > To: " polymicrogyria " <polymicrogyria >

> > Sent: Thursday, 1 September 2011 2:53 PM

> > Subject: (unknown)

> >

> >

> >

> > My name is Deb and I live in Melbourne, Australia. My grandson was diagnosed

with unilateral polymicrogyria the day before his first birthday. My daughter

and i knew something was up at around 6 weeks of age, because he was born at

33weeks they kept telling us it was because he was premature that he was behind

in most milestones. He had his mri on 1/8/11 and we got the diagnosis 10 days

later. He cannot sit up by himself, his left arm & leg are floppy hence the

unilateral diagnosis, basically his left brain is normal and we are currently

attending physiotherapy, occupational therapy, speech therapy. He was fitted

yesterday for a handsplint to wear at night to stop his hand and fingers

contracting so that he wont need botox for a while. There are no support groups

that we can find in Australia, we have only one specialist so cannot even get

second opinion on treatment. Is anyone doing anything different?? I just want

the best for my grandson.

> > My daughter has been coping well, she is doing a wonderful job.

> >

> >

[Guest guest]

What kind of seizure are they on the EEG? How often does she have them? How long

do they last? ACTH they use for infantile spasms. I am certain Dr Dobyns would

suggest surgery. He did to us and we only had a few and one med. I think with

some PMG lesions they are more likely to cause seizures and easier to do

surgery.

Diane

[Guest guest]

Surgery is an option as one of the doctors suggested but I am so afraid of the

side effects of such surgeries!

And about the kind of sz s that Lana is having, I don't know exactly what does

they called but lately they became more often occur, like clusters 4-5 times

daily, but with the new medications hope it gets better.

Lina

> What kind of seizure are they on the EEG? How often does she have them? How

long do they last? ACTH they use for infantile spasms. I am certain Dr Dobyns

would suggest surgery. He did to us and we only had a few and one med. I think

with some PMG lesions they are more likely to cause seizures and easier to do

surgery.

> Diane

>

>

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

>

>

[Guest guest]

We are 3 weeks out of a hemisphere removal. If anyone wants to hear about it

please get in touch with me. I have pictures of my daughters progress as well.

Sent from my iPhone

> Surgery is an option as one of the doctors suggested but I am so afraid of the

side effects of such surgeries!

>

> And about the kind of sz s that Lana is having, I don't know exactly what does

they called but lately they became more often occur, like clusters 4-5 times

daily, but with the new medications hope it gets better.

>

> Lina

>

>

>

> > What kind of seizure are they on the EEG? How often does she have them? How

long do they last? ACTH they use for infantile spasms. I am certain Dr Dobyns

would suggest surgery. He did to us and we only had a few and one med. I think

with some PMG lesions they are more likely to cause seizures and easier to do

surgery.

> > Diane

> >

> >

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

> >

> >

[Guest guest]

Hi

If it's ok to jump on the the message thread i'd be interested to know what

you've been through with regard to surgery. I also really pleased to hear it's

gone well :-)

My daughter Jenna is now 11months. We started a surgery assessment in March and

have so far has another MRI and video EEG. We're going to Alder Hey for a 3T

scan in a few weeks and the possibly GOSH for a Grid scan. Although the surgery

would be done in Leeds Jenna's notes are with a consultant in Paris for a second

opinion.

When we've completed all the tests i'll be sitting down with the

neurologists/surgeons. Do you have any suggestions on what i should be asking

and prepared for.

I hope this isn't asking too much.

Thank you

Katy (and Jenna)x

> >

> > > What kind of seizure are they on the EEG? How often does she have them?

How long do they last? ACTH they use for infantile spasms. I am certain Dr

Dobyns would suggest surgery. He did to us and we only had a few and one med. I

think with some PMG lesions they are more likely to cause seizures and easier to

do surgery.

> > > Diane

> > >

> > >

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

> > >

> > >

[Guest guest]

Hi ,

How is her development milestone goes? I mean how was it before the surgery and

after? How old is she?

Best Regards,

Lina Kurdi

> We are 3 weeks out of a hemisphere removal. If anyone wants to hear about it

please get in touch with me. I have pictures of my daughters progress as well.

>

>

>

> Sent from my iPhone

>

>

>

> > Surgery is an option as one of the doctors suggested but I am so afraid of

the side effects of such surgeries!

> >

> > And about the kind of sz s that Lana is having, I don't know exactly what

does they called but lately they became more often occur, like clusters 4-5

times daily, but with the new medications hope it gets better.

> >

> > Lina

> >

> >

> >

> > > What kind of seizure are they on the EEG? How often does she have them?

How long do they last? ACTH they use for infantile spasms. I am certain Dr

Dobyns would suggest surgery. He did to us and we only had a few and one med. I

think with some PMG lesions they are more likely to cause seizures and easier to

do surgery.

> > > Diane

> > >

> > >

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

> > >

> > >

[Guest guest]

Sorry, ACTH is a hormone treatment, similar to steriods that can also be used

for seizures. We also tried Prednisone which they can only take for 3mths, but

our girl was seizure free whilst on this course of treatment, but because it can

only be taken for 3mths someone on here suggested the ACTH treatment which we

then got done via the neuro team at our hospital with success so far.... it is

only used for infantile spasms, so it will depend what type of seizures your

child is having.

Our girl was having clusters of spasms up to 12 times a day and was also on 5

meds. She is now only on 2 to maintain her. The doc has said she will probably

develop some partial complex seizures later on but at least for now she is

getting some seizure free time to develop. She is a different kid without

seizures, smiling again and her personality is really shining through. Starting

to get stronger and we hope she will learn to hold her head up soon.

I hope you have good support where you are. Stay strong.

Cheers

Kat

________________________________

To: " polymicrogyria " <polymicrogyria >

Sent: Friday, 2 September 2011 6:42 PM

Subject: Re: (unknown)

 

What do u mean by ACTH med??

Best Regards,

Lina Kurdi

> have they tried the ACTH medication for her seizures? We used this for our

girl and shes been seizure free for 3mths so far. They said they will come back

but will be different types, we are hoping we get some more time yet.

>

> cheers

> Kat

>

> ________________________________

>

> To: " polymicrogyria " <polymicrogyria >

> Cc: " polymicrogyria " <polymicrogyria >

> Sent: Thursday, 1 September 2011 10:02 PM

> Subject: Re: (unknown)

>

>

> Hello everyone,

> My daughter was diagnosed with right side of the brain PMG, we discovered this

when she was only 2 weeks of age. She had seizures on z first 24 hours when she

was born, she was taking two medic. And we lived happily with no seizures for 3

months after that everything changed seizures became more aggressive and for at

least 15 times per day.

> Now she is taking five med. and she still having seizures, am writing this

while I am n z hospital and so frustrated and don't know what is the next step!!

The doctor is suggesting surgery to remove the affected part of the brain. Have

anyone tried such a surgery?? Kindly advice!

>

> Best Regards,

> Lina Kurdi

>

>

>

> > Hi Deb

> >

> > My name is Kat and I'm from NZ so probably alot closer than most of us on

here. I was so happy to come across this website and to know there are others

out there.

> >

> > My girl is 1 year old next week and we found out at 11wks she has left sided

PMG, she developed seizures an at early age.. We have had the ACTH treatment for

them and have been lucky enough to be seizure free for 3mths now. During this

time we have been working on her development, she also does not hold her head up

or sit up yet either. But it sounds like you and your daughter are doing the

right things for your girl, therapy and lots exercises, stretching and

stimulation overall is the key, and getting the support from the professionals

you need.

> >

> > we are lucky here to have a play centre that focus's on children that need

extra help, the therapist works with our girl weekly one on one and gives us

exercises to work on at home. We also used finger splits for a few months and

now she does not need them.

> >

> > My advice to you is keep doing what you are doing, lots of love, time and

therapy is what gets our kids through.

> >

> > Sorry I couldn't offer much more advice, but just wanted you to know we are

here Some of the ladies on her have good ideas about therapy as they have

older children so may be able to offer some better ideas.

> >

> > Good luck to you and your family.

> > Kat

> >

> > ________________________________

> >

> > To: " polymicrogyria " <polymicrogyria >

> > Sent: Thursday, 1 September 2011 2:53 PM

> > Subject: (unknown)

> >

> >

> >

> > My name is Deb and I live in Melbourne, Australia. My grandson was diagnosed

with unilateral polymicrogyria the day before his first birthday. My daughter

and i knew something was up at around 6 weeks of age, because he was born at

33weeks they kept telling us it was because he was premature that he was behind

in most milestones. He had his mri on 1/8/11 and we got the diagnosis 10 days

later. He cannot sit up by himself, his left arm & leg are floppy hence the

unilateral diagnosis, basically his left brain is normal and we are currently

attending physiotherapy, occupational therapy, speech therapy. He was fitted

yesterday for a handsplint to wear at night to stop his hand and fingers

contracting so that he wont need botox for a while. There are no support groups

that we can find in Australia, we have only one specialist so cannot even get

second opinion on treatment. Is anyone doing anything different?? I just want

the best for my grandson.

> > My daughter has been coping well, she is doing a wonderful job.

> >

> >

[Guest guest]

I'll post the entire thing once we are farther along. But, here is the summary -

Mysha is 14 years old. Her PMG affected about 80% of her left hemisphere. She

had weakness on her right side, but otherwise there were no affects. Seizure

started at 18 months, then went away. She was off meds from 3-5 years. She

seized again, but was fairly stable on a single drug. At 8 she had Keppra added

(ugh!). In December of 2009 he had an EEG that revealed she was in subclinical

status. Always. No matter what they did. Then her IQ dropped 20 points in one

year. We tried drug after drug - some would work for a month, but the status

would come back and her actual convulsions got worse.

We took her to Cleveland Clinic, main campus where Dr. Wyllie (wow!!) said

surgery was an option, but it was our choice. No pressure. She presented

everything - and she talked TO my daughter. We met Dr. Bingaman (double WOW) and

my daughter said she wanted the surgery. On August 11 he performed a functional

hemisphereectomy (sp??) and removed about 65% of the left hemisphere. There was

no PMG on the right - and no seizure activity. It was the hardest thing I've

ever done (if you want to hear the entire story of the day of surgery send me a

note). Following surgery she raised her right leg and responded to commands as

soon as they brought her around. It tool an hour for her to speak. 24 hours

after surgery she spoke her first sentence. Today she came home. She's walking

slowly, but without any aid, and her arm is weaker. He also has a slight droop

on her right mouth and a blind spot in her periphreal (cant spell!) vision

(expected!) There may be some memory issues, but we are watchig and waiting (22

days.....). She spent 4 days in PICU, 6 days on a unit and 11 days in rehab

getting PT, OT and speech.

Before surgery we ha numerous MRI and CT scans. A functional MRI and a WADA

test. We, of course, had numerous video EEGs and regular EEGs. There was also a

visual field exam We did not do implants because the team felt it wasn't

necessary.

Cleveland Clinic, Dr. Wyllie and Dr. Lashwanee (sp? The other epileptologist)

and Dr. Bingaman were amazing. The child life people were great, and the care

was great.

If there are any more questions please ask. Oh, wait, the big one. No seizures.

None. And, following surgery I got worried and they did a 24 hour EEG - there

was NO seizure activity. Cleveland Clinic is NOT doing these surgeries to make a

name - they do 6-7 a MONTH. They don't do surgery if they aren't pretty

confident they can help, and there is no pressure.

Sent from my iPhone

> Hi ,

>

> How is her development milestone goes? I mean how was it before the surgery

and after? How old is she?

>

> Best Regards,

> Lina Kurdi

>

>

>

> > We are 3 weeks out of a hemisphere removal. If anyone wants to hear about it

please get in touch with me. I have pictures of my daughters progress as well.

> >

> >

> >

> > Sent from my iPhone

> >

> >

> >

> > > Surgery is an option as one of the doctors suggested but I am so afraid of

the side effects of such surgeries!

> > >

> > > And about the kind of sz s that Lana is having, I don't know exactly what

does they called but lately they became more often occur, like clusters 4-5

times daily, but with the new medications hope it gets better.

> > >

> > > Lina

> > >

> > >

> > >

> > > > What kind of seizure are they on the EEG? How often does she have them?

How long do they last? ACTH they use for infantile spasms. I am certain Dr

Dobyns would suggest surgery. He did to us and we only had a few and one med. I

think with some PMG lesions they are more likely to cause seizures and easier to

do surgery.

> > > > Diane

> > > >

> > > >

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

> > > >

> > > >

[Guest guest]

My girl is also having clusters 6-7 times daily and she stopped development two

months ago although she was developing well when she wad seizures free for three

months. But now she is deferent kid, only concentrating on controlling seizures

that she keeps having every day.

Hope everything will be fine soon.

Take care,

Lina

> Sorry, ACTH is a hormone treatment, similar to steriods that can also be used

for seizures. We also tried Prednisone which they can only take for 3mths, but

our girl was seizure free whilst on this course of treatment, but because it can

only be taken for 3mths someone on here suggested the ACTH treatment which we

then got done via the neuro team at our hospital with success so far.... it is

only used for infantile spasms, so it will depend what type of seizures your

child is having.

>

> Our girl was having clusters of spasms up to 12 times a day and was also on 5

meds. She is now only on 2 to maintain her. The doc has said she will probably

develop some partial complex seizures later on but at least for now she is

getting some seizure free time to develop. She is a different kid without

seizures, smiling again and her personality is really shining through. Starting

to get stronger and we hope she will learn to hold her head up soon.

>

> I hope you have good support where you are. Stay strong.

>

> Cheers

> Kat

>

> ________________________________

>

> To: " polymicrogyria " <polymicrogyria >

> Sent: Friday, 2 September 2011 6:42 PM

> Subject: Re: (unknown)

>

>

> What do u mean by ACTH med??

>

> Best Regards,

> Lina Kurdi

>

>

>

> > have they tried the ACTH medication for her seizures? We used this for our

girl and shes been seizure free for 3mths so far. They said they will come back

but will be different types, we are hoping we get some more time yet.

> >

> > cheers

> > Kat

> >

> > ________________________________

> >

> > To: " polymicrogyria " <polymicrogyria >

> > Cc: " polymicrogyria " <polymicrogyria >

> > Sent: Thursday, 1 September 2011 10:02 PM

> > Subject: Re: (unknown)

> >

> >

> > Hello everyone,

> > My daughter was diagnosed with right side of the brain PMG, we discovered

this when she was only 2 weeks of age. She had seizures on z first 24 hours when

she was born, she was taking two medic. And we lived happily with no seizures

for 3 months after that everything changed seizures became more aggressive and

for at least 15 times per day.

> > Now she is taking five med. and she still having seizures, am writing this

while I am n z hospital and so frustrated and don't know what is the next step!!

The doctor is suggesting surgery to remove the affected part of the brain. Have

anyone tried such a surgery?? Kindly advice!

> >

> > Best Regards,

> > Lina Kurdi

> >

> >

> >

> > > Hi Deb

> > >

> > > My name is Kat and I'm from NZ so probably alot closer than most of us on

here. I was so happy to come across this website and to know there are others

out there.

> > >

> > > My girl is 1 year old next week and we found out at 11wks she has left

sided PMG, she developed seizures an at early age.. We have had the ACTH

treatment for them and have been lucky enough to be seizure free for 3mths now.

During this time we have been working on her development, she also does not hold

her head up or sit up yet either. But it sounds like you and your daughter are

doing the right things for your girl, therapy and lots exercises, stretching and

stimulation overall is the key, and getting the support from the professionals

you need.

> > >

> > > we are lucky here to have a play centre that focus's on children that need

extra help, the therapist works with our girl weekly one on one and gives us

exercises to work on at home. We also used finger splits for a few months and

now she does not need them.

> > >

> > > My advice to you is keep doing what you are doing, lots of love, time and

therapy is what gets our kids through.

> > >

> > > Sorry I couldn't offer much more advice, but just wanted you to know we

are here Some of the ladies on her have good ideas about therapy as they have

older children so may be able to offer some better ideas.

> > >

> > > Good luck to you and your family.

> > > Kat

> > >

> > > ________________________________

> > >

> > > To: " polymicrogyria " <polymicrogyria >

> > > Sent: Thursday, 1 September 2011 2:53 PM

> > > Subject: (unknown)

> > >

> > >

> > >

> > > My name is Deb and I live in Melbourne, Australia. My grandson was

diagnosed with unilateral polymicrogyria the day before his first birthday. My

daughter and i knew something was up at around 6 weeks of age, because he was

born at 33weeks they kept telling us it was because he was premature that he was

behind in most milestones. He had his mri on 1/8/11 and we got the diagnosis 10

days later. He cannot sit up by himself, his left arm & leg are floppy hence the

unilateral diagnosis, basically his left brain is normal and we are currently

attending physiotherapy, occupational therapy, speech therapy. He was fitted

yesterday for a handsplint to wear at night to stop his hand and fingers

contracting so that he wont need botox for a while. There are no support groups

that we can find in Australia, we have only one specialist so cannot even get

second opinion on treatment. Is anyone doing anything different?? I just want

the best for my grandson.

> > > My daughter has been coping well, she is doing a wonderful job.

> > >

> > >