Welcome to new member

[Guest guest]

We would like to talk to you also. Please tell us more about Helene. When did

you know that she had problems? Is she able to go to school and anything else

that you would like to share. Ruth

Kim Raub wrote:

> Comment from user:

> my daughter Helene 16yrs has

> microcephaly,polymicrogyria,I would be

> interested in talking to people who have children with

> this condition

[Guest guest]

My son, Trevor, saw Dr. Pincus. He did the 8 shunt surgeries on him back in

the Spring of 2004.

Very nice man but communication was difficult while he was in the hospital

for those 75 days.

He left alot of work up to his residents which I didn't find helpful.

Just my opinion.

Donna

[Guest guest]

,

Sorry to post twice but when I read your other email, I had to say my son

too has seizures coming from the temporal lobe and occipital lobe. We just

found out about the temporal lobe ones when we were sent to Miami to

consider possible surgery for the seizures. Since the seizures were coming

from both sides of the brain, surgery was not possible.

His seizures are mostly controlled but still see a few here and there

especially if he is sick.

He takes 900 Trileptal and 400 Lamictal for now.

Dr. Pincus doing here surgery?

Good luck with the surgery and let us know how it goes.

Take care,

Donna

[Guest guest]

welcome...........my son who is 7 months old has polymicrogryia...........what

has your dr. told you about it and your sons outcome? Our neuro said that he

has Polymicrogryia but his diagnosis is Congential Bilateral Perisylvian

Syndrome......

Welcome to new member

> Email address: dorothy7190

>

> Comment from user:

> My name is Dorothy. I have a 8mo old diagnosed with

> polymicrogyria

[Guest guest]

>

> welcome...........my son who is 7 months old has

polymicrogryia...........what has your dr. told you about it and

your sons outcome? Our neuro said that he has Polymicrogryia but

his diagnosis is Congential Bilateral Perisylvian Syndrome......

> Welcome to new member

>

>

> > Email address: dorothy7190

> >

> > Comment from user:

> > My name is Dorothy. I have a 8mo old diagnosed with

> > polymicrogyria

>

>

>

>

[Guest guest]

Bilateral perisylvian polymicrogyria is another name for Congenital Bitaeral

Perisylvian Syndrome. If your child has BPP or CBPS, they'll have a reflex

called a brisk jaw jerk, some problem with the bulbar functions

(speech,swallowing,mastication), some problem with muscle tone (high or low),

and polymicrogyria (many small folds) on the MRI. Not everyone has seizures or

the same degree of impairment.

Always get a second opinion and try to get into an early intervention program

for physical and occupational therapy.

Pat

Dorothy wrote:

>

> welcome...........my son who is 7 months old has

polymicrogryia...........what has your dr. told you about it and

your sons outcome? Our neuro said that he has Polymicrogryia but

his diagnosis is Congential Bilateral Perisylvian Syndrome......

> Welcome to new member

>

>

> > Email address: dorothy7190

> >

> > Comment from user:

> > My name is Dorothy. I have a 8mo old diagnosed with

> > polymicrogyria

>

>

>

>

[Guest guest]

My daughter has CBPS. She is five years old and overall is fairly mild.

Her fine and gross motor skills are okay. However she is severely affected

in her oral motor area. Her speech is very delayed although if you know her

speech pattern and the context of what she is saying you can understand her.

She has a device to help her with speech. She still drools significantly

and uses 8-10 bandanas a day. She has not had any seizures. We are very

lucky. She also has low muscle tone. I highly recommend early intervention

for speech. Riley has had speech since she was 2 years old and since she

was 2 1/2 has had private therapy twice a week and then 60-90 minutes a week

in school. I

Hope this helps.

christina

>

>Reply-To: polymicrogyria

>To: polymicrogyria

>Subject: Re: Re: Welcome to new member

>Date: Mon, 20 Mar 2006 06:25:32 -0800 (PST)

>

>Bilateral perisylvian polymicrogyria is another name for Congenital

>Bitaeral Perisylvian Syndrome. If your child has BPP or CBPS, they'll have

>a reflex called a brisk jaw jerk, some problem with the bulbar functions

>(speech,swallowing,mastication), some problem with muscle tone (high or

>low), and polymicrogyria (many small folds) on the MRI. Not everyone has

>seizures or the same degree of impairment.

>Always get a second opinion and try to get into an early intervention

>program for physical and occupational therapy.

>

>Pat

>

>Dorothy wrote:

> >

> > welcome...........my son who is 7 months old has

> polymicrogryia...........what has your dr. told you about it and

> your sons outcome? Our neuro said that he has Polymicrogryia but

> his diagnosis is Congential Bilateral Perisylvian Syndrome......

> > Welcome to new member

> >

> >

> > > Email address: dorothy7190

> > >

> > > Comment from user:

> > > My name is Dorothy. I have a 8mo old diagnosed with

> > > polymicrogyria

> >

> >

> >

> >

[Guest guest]

>

>

> > Email address: mary.m101

> >

> > Comment from user:

> > i have a 6 month old nephew diagnosed with PMG @ 4 months

> > with lots of

> > seizures, would like to hear from others with the same

>

I have a 5yr old son with pmg and has seizures. Im hear if you want

to talk. Ive got a lot of questions and concerns im new to this

diagnoses.

[Guest guest]

>

>

>

> 7 with PMG

How old was when the seizures started? Could I

also ask how speech is?

thanks so much

__________________________________________________

[Guest guest]

Dorothy,

My son takes 25mg of Topamax twice a day along with other meds. Meds

effect people differently but for Max Topamax makes him very floppy.

His Dr. and I call it " No Tone Topamax " . We have never gone up on this

dose since the first time he took it because of this.

Thats just out experience,

Joanie & Max (almost 6)

[Guest guest]

Welcome Kim and Family!

I am so glad you found the group. Ask all the questions you can think

of! Everyone is so knowledgeable that you will get a lot of

information back. All of our kids are different, so its great to hear

everyone's opinions. My daughter Alyssa, is almost 3 and we found out

about her PMG when she was 3 months old and had two seizures back to

back. I am still struggling with everything and this group is great

for support and information. Have you or are you getting in contact

with Dr. Dobyns? He is the PMG specialist out of Chicago. He'll

review MRI and/or CT scan films for free and may put you in one of the

research studies he is apart of through Walsh Labs, I think they are in

Boston. We have seen him once at a conference last summer and also are

in contact with him through our geneticist. He is the know all, go to

guy for all types of PMG. You are more than welcome, as is anyone

else, to email me directly at shell2040@... to talk or get support,

we all need as much as we can get.

Take care,

and Alyssa

DOB 8/6/03, Spastic Quad CP, Seizures, Global Delays, Feeding Problems

[Guest guest]

About Dr Dobyns, I hear so much about this guy and would really like

feedback about what help he has been to you all in the US.

I know he can include you in his study and review MRI's but in what

sense has this been helpful in the day to day care and management

plan of your child.

In Melbourne we have a PMG expert called Rick Leventer, and he was

able to go through my son's MRI with us but said he could not give a

realistic prognosis nor help with a mangement plan for him. I wonder

if I contact Dr Dobyns would the response be much the same? Or has

he specifically been able to help more so. I get the feel that he is

a great guy and everyone seems to like him but I'm unclear about how

he is able to help so if anyone could clear that up for me that

would be fantastic.

Rose, mum to the beautiful

>

> Welcome Kim and Family!

> I am so glad you found the group. Ask all the questions you can

think

> of! Everyone is so knowledgeable that you will get a lot of

> information back. All of our kids are different, so its great to

hear

> everyone's opinions. My daughter Alyssa, is almost 3 and we found

out

> about her PMG when she was 3 months old and had two seizures back

to

> back. I am still struggling with everything and this group is

great

> for support and information. Have you or are you getting in

contact

> with Dr. Dobyns? He is the PMG specialist out of Chicago. He'll

> review MRI and/or CT scan films for free and may put you in one of

the

> research studies he is apart of through Walsh Labs, I think they

are in

> Boston. We have seen him once at a conference last summer and

also are

> in contact with him through our geneticist. He is the know all,

go to

> guy for all types of PMG. You are more than welcome, as is anyone

> else, to email me directly at shell2040@... to talk or get

support,

> we all need as much as we can get.

>

> Take care,

> and Alyssa

> DOB 8/6/03, Spastic Quad CP, Seizures, Global Delays, Feeding

Problems

>

[Guest guest]

Hello Rose,

Dr. Dobyns has helped us to understand PMG and what it means in

regards to our daughter, Alyssa. A lot of issues are still up in the

air and we have to " wait and see " about them but knowing what his

research has found out has helped us a lot to know what to expect and

to be able to put our arms around and understand PMG. He also helps

by making sure that the kids are getting the right care and are on

the right medications. Many doctors that we as parents take our

children too have never seen anyone with PMG and may have not even

heard about it at all. Having a specialist that knows everything

there is to know is priceless. He can also help our specfic

specialists learn about PMG so they can better treat our children.

Another plus that comes with Dr. Dobyns is the network of other

doctors that he has. He knows who else should see your child. We

have gotten a lot of help from Alyssa's Physiatrist (sp?), Physical

Medicine and Rehabilitation doctor (Dr. Dabrowski, Metro Detroit

area). He is the one that has been most involved in the day to day

(treatment plan). Dr. Dobyns helps by knowing what has worked for

other children with PMG but he isn't the one that let's say writes

the perscriptions for things. And since every child with PMG is

different it would be hard for anyone to give a prognosis for a

child. I think it is the level of feeding problems, cerebral palsy,

scoliosis, etc. that more determines the prognosis of the children

than the PMG diagnosis. I hope that I have been able to clear this

up for you atleast a bit. Please let me know if you have anyother

questions.

Take care,

and Alyssa

DOB 8/6/03, Spastic Quad CP, Partial Seizure Disorder, Global Delays

and Feeding Problems

[Guest guest]

Nice to meet you Dorthy.. I am 25 and they just recenly digonised me

with polymicrogyria maybe you can tell me a little bit more about it

and boy i sure with they would of found out that I had this sooner i

have been suffering from head aches my whole life..

>

[Guest guest]

Hi I am and I was just recently digonised with that I am now

25 but i sure with they would of found out about it soon so I didn't

have to live with head aches and dizzy spells all the nerologist said

he can do is put me back on seziure meds

IS THIS TRUE???

[Guest guest]

I am 25 and I was just digonised with PMG and I sure wish i knew more

and what they could do. I have lived with these sympoms long enough

[Guest guest]

does anyone know if there are any other drugs out there for seziures

other than depakote and dilatin that wont make you sleepy when you

take it

I was on both depakote and dilatin for a long time and now since I was

digonosed with PMG they are putting me back on DILATIN and Im not

happy I wanna know is there any thing else that wont make me so tired

SHANNON

[Guest guest]

,

Dr. Dobyns of the University of Chicago Hospital is the foremost

authority on PMG. I would suggest asking your neuro for a copy of your MRI and

CT reports and emailing a copy of that to Dobyns. Him or someone from his

research team will undoubtedly contact you. He also has a funded research

program and you may be eligible to see him without charge. You are a unique

case, I'm sure he'd want to see you and if anyone knows the best treatment plan,

it's him.

godzevangelistgirl2004 wrote:

does anyone know if there are any other drugs out there for seziures

other than depakote and dilatin that wont make you sleepy when you

take it

I was on both depakote and dilatin for a long time and now since I was

digonosed with PMG they are putting me back on DILATIN and Im not

happy I wanna know is there any thing else that wont make me so tired

SHANNON

[Guest guest]

,

I agree, there are many new seizure meds (and different older meds than

the ones you've taken). Your neuro should be aware of them. If not,

get another neuro. Hope you get what you need.

Take Care,

Joanie & Max

[Guest guest]

Hello Kim

I am wondering, how is your baby doing now?

Thanks,

Liz

--- Kim Raub wrote:

>

> > Email address: lakeasha_w

> >

> > Comment from user:

> > My daughter, Savannah was born June 06 with Stage

> 5

> > lissencephaly and

> > polymicrogyria. Would like to learn coping

> > mechanisms,network with

> > people in

> > the same/similar situations.

>

>

__________________________________________________

[Guest guest]

>

>

> > Hi,

Can you tell about your son, how he has done since birth? how did he

get diagnosed NOW? did he not have MRI when he was born?

Thanks for sharing.

Liz

[Guest guest]

I think it is phenomenal that a teacher is going out of his/her way to

educate themselves about their student. I wish we were so lucky!

and Carver

_____

From: polymicrogyria [mailto:polymicrogyria ]

On Behalf Of Kim Raub

Sent: Thursday, September 28, 2006 8:50 PM

To: polymicrogyria

Subject: Welcome to new member

--- Yahoo! Groups Notification

<polymicrogyria-

<mailto:polymicrogyria-acceptsub-LfvGKOFLOOISjiJkpAN3oaU%40yahoogroups.com>

acceptsub-LfvGKOFLOOISjiJkpAN3oaU >

wrote:

> Date: 28 Sep 2006 18:55:06 -0000

> From: Yahoo! Groups Notification

>

<polymicrogyria-

<mailto:polymicrogyria-acceptsub-LfvGKOFLOOISjiJkpAN3oaU%40yahoogroups.com>

acceptsub-LfvGKOFLOOISjiJkpAN3oaU >

> To: polymicrogyria- <mailto:polymicrogyria-owner%40yahoogroups.com>

owner

> Subject: APPROVE -- eseteach4 <eseteach4yahoo (DOT)

<mailto:eseteach4%40yahoo.com> com> wants

> to join polymicrogyria

>

>

> Hello,

>

> The following person would like to join the

> polymicrogyria group:

> Email address: eseteach4 <eseteach4yahoo (DOT) <mailto:eseteach4%40yahoo.com>

com>

>

> Comment from user:

> I am a teacher with a student with this disorder and

> would like to share

> and learn about symtoms, behaviors etc.

>

> This membership request requires your approval because

> the

> polymicrogyria group is restricted, which means you must

> approve each new member.

>

> To approve or reject this pending membership using the

> web,

> please go here:

>

http://groups.

<http://groups.yahoo.com/group/polymicrogyria/members?group=pending>

yahoo.com/group/polymicrogyria/members?group=pending

>

> To approve this membership using email, reply to this

> message.

>

> To reject this membership using email, forward this

> message to

>

>

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<mailto:polymicrogyria-rejectsub-LfvGKOFLOOISjiJkpAN3oaU%40yahoogroups.com>

rejectsub-LfvGKOFLOOISjiJkpAN3oaU

>

>

> NOTE: This membership request will expire after 14 days.

> If you do

> not take action within that time, this membership request

> will be

> automatically rejected. Yahoo! Groups does this to

> maintain a high

> quality of service for our users.

>

> Thank you for choosing Yahoo! Groups.

>

> Regards,

>

> Yahoo! Groups Customer Care

>

>

[Guest guest]

does anyone know if there will be a conference next year it is usally in july it

should be in 2007 in july erica mum to joey who is getting his own way in school

all week went bowling for his therepy today.

Kim Raub wrote: > Email address: SweetLilB91

>

> Comment from user:

> My name is Nikki and my little brother (5yrs) was just

> diagnosed with

> pachygyria. I would like as much info as possible to

> better understand

> this disease.

[Guest guest]

>

>

> > Email address: crenshaws3

> >

> > Comment from user:

> > Our son was born a little more than 2 yrs ago diagnosed

> > w/PMG. We would

> > be appreciative of any guidance and/or suggestions we

> > obtain from

> > this group.

>

Best advice.. go to Dr. Dobyns in Chicago. Expect the unexpected

and enjoy the ride with your beloved child. Our son is 9

years old...hard to believe he is 9. In 12 days he is having stomach

surgery.. due to severe reflux.. We took to Dobyns, and he

predicted seizures, reflux, hip and bone problems, extreme learning

delay, etc. Everything Dobyns predicted, has slowly evolved... but

it is not to scare you, but to say that his clinic has studied these

kids exclusively. What he didnt predict, is the absolute gorgeous

and flirtatious, giggling little boy. can not speak, can not

walk, etc. BUT he has progressed in other non traditional ways that

we embrace as true gifts.

PMG is a mystery.. your love isnt. A VERY VERY VERY wise pastor

once told me.. we are not put on this earth to ask " WHY ME?? " we

are put here to ask " WHAT FOR " .

We have been through alot in the past nine years... at age 2..

started losing weight on us, thats when we got the g tube, and one by

one new problems were added to his list. BUT listen and read the

stories.. some of the kids have the opposite.. tons of problems at

birth that go away with age.

There is not rhyme or reason. But Dobyns is exceptional in our

book..honest, and direct with you.

Good luck...and welcome to the web site.. lots of amazing kids to

learn about.

Hasselberger (Mom to age 9)

[Guest guest]

Welcome! I am glad you found this group. It has been a lifesaver for me.

Tell us more about your son.

Take care,

and Alyssa (3 yo, BFPP, micro, spastic quad CP....)