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Re: BPP/CBPS & Pat

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,

Hi. Regarding Riley, when I mean mild, I mean compared to alot of the kids

I have read about on this site. We are truly blessed. I will start from

beginning. Riley met all of her gross motor skill milestones. She sat up,

crawled, walked at the right time. She has no problems running, jumping,

climbing or even riding a bike with training wheels. Fine motor wise, she

can dress herself, write and feed herself. When she was a toddler she did

get PT and OT once a week but now only receives speech. The only reason we

had early intervention was because of some of her swallowing problems. I am

a dietitian in long-term care and deal alot with people who have swallowing

problems. When Riley was just a year old I noticed that she was having

trouble advancing from pureed consistencies and choking. Her thin liquids

were coming out of the sides of her mouth when she was drinking and she

would occasionally cough after drinking thin liquids. These are all

symptoms of problems swallowing. So I persuaded my pediatrician to get me a

speech referral. This took 5 extra months and a change of doctors before it

happened. The speech therapist worked on swallow and then we got the county

program involved when she turned two. For six months the speech therapist

worked on her speech but did not get much progress. She referred us to a

developmental pediatrician who recommended an MRI and at that time we got

the diagnosis. She was 2 1/2. We saw Gropman at childrens hospital

in washington dc who has done research on polymicrogyria. She was the one

who advised us to do intensive speech therapy twice a week privately.

From what I have read about CBPS, it appears to really affect our children's

oral motor area. Like I said, Riley still drools alot. She had never had a

seizure, but we are aware that she is still at risk. We again are very

fortunate that her cognitive ability was not affected, so perhaps it won't

be with your son. As people have said before every child is different.

Riley goes to a regular elementary school, but is in a special program

called AAC (assistive augmentative communication). She is one of 5 kids in

a kindergarten, first, second grade class. They all have devices to aid

with communication. Riley has a dynamite. She is mainstreamed into regular

kindergarten for reading, art and music.

We live in Olney, land which is between baltimore and washington dc. I

have pictures of her and will have my husband try to scan them in a few

days. Hope this helps and hope I wasn't too long winded.

christina

>

>Reply-To: polymicrogyria

>To: <polymicrogyria >

>Subject: BPP/CBPS & Pat

>Date: Tue, 21 Mar 2006 12:21:40 -0500

>

>Ok since I am new to this..........what is brisk jaw jerk?

> is 7 months old and it doesn't seem to have affected his

>swallowing.......he seems to drink his bottle fine. He does drool a lot

>but

>not sure if its from teething or what. He does make sounds and mimics,

>but because of his age has yet to say any words.

>

>......what you say she is overall if fairly mild, what do you mean

>exactly?? is in Physical Therapy 2x a week and in Occupational

>Therapy 1x a week. They won't do anything with speech yet because of his

>age. But I am pushing everything believe me. We are currently learning

>sign language to help along if that is what is needed.

>

> does your child go to regular school or a specialty school?

>Did she hit her milestones on time?? I have sooo many questions!! :) I

>feel so alone with this......I mean I explain the the " experts " what the DX

>is and they look at me like I'm nuts and don't understand what it is.

>

>Where are you located? Do you have any photos or videos of your daughter?

>You say she never had seizures?? What came about that she got dx with

>CBPS?? Have they ever talked about surgery?

>

> 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

> > >

> > >

> > >

> > >

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We are moving to the area in August.

Would love to get together with you and find out the ups and downs of living

there.

Where do I go to apply for the Deeming Waiver( Beckett) or any other

state services?

Donna(mom to Trevor, 10 yrs old moderate PMG and BPNH along with a slew of

other diagnosis)

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-

Thank you soooo mych for the reply (and it could have been 5 pages and I

would have read every single word 800 times!) I haven't been able to find

anyone that was dx with the same thing as (didn't realize that BPP

was the same t hing!)

I know every child is different, and I know I can't base against

anyone else but it is soo good to hear that there are children out there

that have the same thing as and are not severly disabled.

does the same thing with drinking his bottle, it leaks out of the

side of his mouth but I figured it was because he had the fast flow nipple

instead of a slow flow. Then I figured I should change back to a slow flow

nipple because that would work his jaw muscles a little more if he really

had to work at it.....what do you think??

I am just soooo excited that finally there is someone .........

You can't even imagine.......i am sitting here with tears in my eyes because

I finally can hope for that things might be ok.

Thank you again.

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

> > >

> > >

> > >

> > >

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-

One more thing (I'm sure I'll say that about 50 more times!)

How is Riley doing with the swallowing and eating now???

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

> > >

> > >

> > >

> > >

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Donna,

Are you moving to maryland? I couldn't figure it out by the email.

christina

>

>Reply-To: polymicrogyria

>To: <polymicrogyria >

>Subject: Re: BPP/CBPS & Pat

>Date: Wed, 22 Mar 2006 09:28:28 -0500

>

>We are moving to the area in August.

>Would love to get together with you and find out the ups and downs of

>living

>there.

>Where do I go to apply for the Deeming Waiver( Beckett) or any other

>state services?

>

>Donna(mom to Trevor, 10 yrs old moderate PMG and BPNH along with a slew

>of

>other diagnosis)

>

_________________________________________________________________

Don’t just search. Find. Check out the new MSN Search!

http://search.msn.click-url.com/go/onm00200636ave/direct/01/

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Guest guest

,

I am glad I was able to help you. Try a slower nipple that may help. If

you notice that he is not advancing well with his solids when he gets a

little older, definitely push for speech to work on swallow and jaw

strength. Riley was started at 1 1/2 years and I am a firm believer in

early intervention.

Her swallow is fine now with only occasional choking episodes (nothing

major). Please feel free to ask me any questions you may have so I can

help.

christina

>

>Reply-To: polymicrogyria

>To: <polymicrogyria >

>Subject: RE: BPP/CBPS & Pat

>Date: Wed, 22 Mar 2006 09:31:10 -0500

>

>-

>

>Thank you soooo mych for the reply (and it could have been 5 pages and I

>would have read every single word 800 times!) I haven't been able to find

>anyone that was dx with the same thing as (didn't realize that BPP

>was the same t hing!)

>

>I know every child is different, and I know I can't base against

>anyone else but it is soo good to hear that there are children out there

>that have the same thing as and are not severly disabled.

> does the same thing with drinking his bottle, it leaks out of the

>side of his mouth but I figured it was because he had the fast flow nipple

>instead of a slow flow. Then I figured I should change back to a slow flow

>nipple because that would work his jaw muscles a little more if he really

>had to work at it.....what do you think??

>

>I am just soooo excited that finally there is someone .........

>You can't even imagine.......i am sitting here with tears in my eyes

>because

>I finally can hope for that things might be ok.

>

>Thank you again.

>

> 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

> > > >

> > > >

> > > >

> > > >

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Guest guest

,

I just spoke with my speech therapist and she had a couple of other

recommendations for you regarding the bottle feeding. She agreed that the

slower one is best, look for one that is criss-cross cut. Also, try and

keep his head up at a 90 degree angle when feeding him the bottle, that will

help with lip closure. She also suggested thickening the formula with

cereal since thick liquids may be tolerated better. Hope it helps.

christina

>

>Reply-To: polymicrogyria

>To: polymicrogyria

>Subject: RE: BPP/CBPS & Pat

>Date: Wed, 22 Mar 2006 14:46:28 -0500

>

>,

>

>I am glad I was able to help you. Try a slower nipple that may help. If

>you notice that he is not advancing well with his solids when he gets a

>little older, definitely push for speech to work on swallow and jaw

>strength. Riley was started at 1 1/2 years and I am a firm believer in

>early intervention.

>

>Her swallow is fine now with only occasional choking episodes (nothing

>major). Please feel free to ask me any questions you may have so I can

>help.

>christina

>

>

> >

> >Reply-To: polymicrogyria

> >To: <polymicrogyria >

> >Subject: RE: BPP/CBPS & Pat

> >Date: Wed, 22 Mar 2006 09:31:10 -0500

> >

> >-

> >

> >Thank you soooo mych for the reply (and it could have been 5 pages and I

> >would have read every single word 800 times!) I haven't been able to

>find

> >anyone that was dx with the same thing as (didn't realize that BPP

> >was the same t hing!)

> >

> >I know every child is different, and I know I can't base against

> >anyone else but it is soo good to hear that there are children out there

> >that have the same thing as and are not severly disabled.

> > does the same thing with drinking his bottle, it leaks out of the

> >side of his mouth but I figured it was because he had the fast flow

>nipple

> >instead of a slow flow. Then I figured I should change back to a slow

>flow

> >nipple because that would work his jaw muscles a little more if he really

> >had to work at it.....what do you think??

> >

> >I am just soooo excited that finally there is someone .........

> >You can't even imagine.......i am sitting here with tears in my eyes

> >because

> >I finally can hope for that things might be ok.

> >

> >Thank you again.

> >

> > 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

> > > > >

> > > > >

> > > > >

> > > > >

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How far from Royal Oak/Madison Heights area???

How old is your child? And what is his/her dx?? If you don't mind me

asking.

_____

From: polymicrogyria [mailto:polymicrogyria ]

On Behalf Of harriet Weber

Sent: Wednesday, March 22, 2006 7:13 PM

To: polymicrogyria

Subject: Re: BPP/CBPS & Pat

We live in lower Michigan in the thumb area.

Harriet

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Guest guest

Thanks again .........

We tried it last night putting cereal in his bottle......because the fact

that it almost stopped the drolling out of the edge of his mouth ......it

made him sleep longer throught he night!!! YES!!!!!!!!!!! :)

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

> > > > >

> > > > >

> > > > >

> > > > >

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Guest guest

GReat!

>

>Reply-To: polymicrogyria

>To: <polymicrogyria >

>Subject: RE: BPP/CBPS & Pat

>Date: Thu, 23 Mar 2006 09:15:12 -0500

>

>Thanks again .........

>

>We tried it last night putting cereal in his bottle......because the fact

>that it almost stopped the drolling out of the edge of his mouth ......it

>made him sleep longer throught he night!!! YES!!!!!!!!!!! :)

>

> 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

> > > > > >

> > > > > >

> > > > > >

> > > > > >

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Guest guest

Again I know I probably sound sappy........

But it is sooo good to have someone who has the same thing.

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

> > > > > >

> > > > > >

> > > > > >

> > > > > >

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The jaw jerk is a reflex. The doctor would place their index finger on the lower

jaw, then tap it with a reflex hammer. A contraction of muscles connected to

the lower jaw follows the downward tap. In a brisk jaw jerk the contractions and

relaxations of the muscles will occur quickly.

An exaggerated (brisk) reflex can indicate damage to nerve fibers that go from

the cortex of the brain to cells in the brainstem that control muscles involved

in speech, mastication, and swallowing. The damage is called pseudobulbar palsy

because it's located in the brain (perisylvian region in CBPS ) not in the

brainstem.

Pat

Mel wrote: Ok since I am new to this..........what is

brisk jaw jerk?

is 7 months old and it doesn't seem to have affected his

swallowing.......he seems to drink his bottle fine. He does drool a lot but

not sure if its from teething or what. He does make sounds and mimics,

but because of his age has yet to say any words.

......what you say she is overall if fairly mild, what do you mean

exactly?? is in Physical Therapy 2x a week and in Occupational

Therapy 1x a week. They won't do anything with speech yet because of his

age. But I am pushing everything believe me. We are currently learning

sign language to help along if that is what is needed.

does your child go to regular school or a specialty school?

Did she hit her milestones on time?? I have sooo many questions!! :) I

feel so alone with this......I mean I explain the the " experts " what the DX

is and they look at me like I'm nuts and don't understand what it is.

Where are you located? Do you have any photos or videos of your daughter?

You say she never had seizures?? What came about that she got dx with

CBPS?? Have they ever talked about surgery?

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

> >

> >

> >

> >

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Guest guest

Mel,

No problem. I am glad I was able to help.

christina

>

>Reply-To: polymicrogyria

>To: <polymicrogyria >

>Subject: RE: BPP/CBPS & Pat

>Date: Thu, 23 Mar 2006 12:30:32 -0500

>

>Again I know I probably sound sappy........

>

>But it is sooo good to have someone who has the same thing.

>

> 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

> > > > > > >

> > > > > > >

> > > > > > >

> > > > > > >

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