Re: Bilateral Perisylvian Polymicrogyria

[Guest guest]

I was wondering how old your son is?

My son Evan is 3yrs and was diagnosed with BPP in August 2005 at 9 months old.

He sat at around 9 1/2 months then a few months later army crawled, he crawled

on all fours at 15 months and then took his first independent steps at age 2

1/2. He has high tone called spasticity mainly on his left side with weakness in

his trunk. He has a lot of oral motor issues and all of his liquids have to be

thickened, he does not really chew just mainly softens food up with his saliva

and then swallows it. He does not talk but does a lot of babbling and says

syllables of words but not the actual word. Evan is a miracle because his MRI

shows a brain of a severely mentally retarded child. Evan is in preschool 4 days

a week and socially and cognitively is about the level of an 2yr old.

Only time will tell how your son will do. There are so many different kids on

the list but all with a PMG diagnosis. You can only do what you are already

doing getting him in therapy and into any specialists that he needs to see. Some

advice that I think will help is to always go with your gut, keep pushing drs

for tests etc. Find a support group for special needs parents in your area other

parents are a huge resource no matter the disability.

a99diva wrote: My son was

diagnosed with BPP in Novemeber 2007. We noticed that he

had " low tone " at around 4-5 months and were referred to Early

Intervention. We began working with them on a weekly basis to

strengthen his muscles and build his motor skills. When he wasn't

sitting on his own at 7 months, he was referred for a Neuro consult.

All his labs came back " normal " until we received the results of the

MRI. We were told that he would be developmentally delayed and most

likely have speech issues, but all the information was very vague

and some did not apply to our son.

We arranged for a second opinion at the Walsh Lab at Children's

Hospital in Boston. We were told that although the PMG is there, it

is atypical, mild and doesn't look like " classic textbook " PMG.

Encouraging, but didn't change much.

As with most kids with this syndrome, everyone presents

differently. He babbles and is very vocal. He doesn't have problems

with swallowing, but is just getting used to chewing crunchy, thick

foods. His low tone and delayed motor skills continue to be the

biggest challenge right now.

I joined this group because my husband and I feel like we have just

been sent out into open sea in a canoe. We cannot get any answers

that we haven't already heard/know. We do everything we possibly can

for the little guy, medically, physically, etc., but I guess it has

come down to faith and acceptance...we seem to be finding ourselves

a little short these days.

Mom 2 Evan Left Spastic Hemiplegia 3yrs old, 6.5yrs nda and SM to

15.5yrs

www.justinichfamily.blogspot.com

---------------------------------

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[Guest guest]

My son, who is 2 ½ also has BPP.

We found out at around 4/5 months old when he started having seizures.

I am sure you will find most of the your answers (if there are answers)

here. This group is wonderful at helping and guiding in the right

directions. Although like you said, each child is different. has PMG

on 80% of his brain, but is doing great comparatively speaking. He is

awesome.

HYPERLINK " http://www.danielspranger.com " www.danielspranger.com

_____

From: polymicrogyria [mailto:polymicrogyria ]

On Behalf Of a99diva

Sent: Tuesday, January 15, 2008 4:14 PM

To: polymicrogyria

Subject: Bilateral Perisylvian Polymicrogyria

My son was diagnosed with BPP in Novemeber 2007. We noticed that he

had " low tone " at around 4-5 months and were referred to Early

Intervention. We began working with them on a weekly basis to

strengthen his muscles and build his motor skills. When he wasn't

sitting on his own at 7 months, he was referred for a Neuro consult.

All his labs came back " normal " until we received the results of the

MRI. We were told that he would be developmentally delayed and most

likely have speech issues, but all the information was very vague

and some did not apply to our son.

We arranged for a second opinion at the Walsh Lab at Children's

Hospital in Boston. We were told that although the PMG is there, it

is atypical, mild and doesn't look like " classic textbook " PMG.

Encouraging, but didn't change much.

As with most kids with this syndrome, everyone presents

differently. He babbles and is very vocal. He doesn't have problems

with swallowing, but is just getting used to chewing crunchy, thick

foods. His low tone and delayed motor skills continue to be the

biggest challenge right now.

I joined this group because my husband and I feel like we have just

been sent out into open sea in a canoe. We cannot get any answers

that we haven't already heard/know. We do everything we possibly can

for the little guy, medically, physically, etc., but I guess it has

come down to faith and acceptance..-.we seem to be finding ourselves

a little short these days.

No virus found in this incoming message.

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2:04 PM

No virus found in this outgoing message.

Checked by AVG Free Edition.

Version: 7.5.503 / Virus Database: 269.19.2/1221 - Release Date: 1/12/2008

2:04 PM

[Guest guest]

My daughter Riley, age 7, was diagnosed with BPP in 2003 at age 2 1/2 years.

She has a " mild " form as well but severely affected in the oral motor phase.

She is in 2nd grade. Right now, she is on grade level with her academics and

has never had a seizure. She walks and runs normally. Her major issue is her

speech which is severely delayed. We can understand about 50% if she speaks

slow. She has a device to communicate with but would rather write. She drools,

and this summer we had her sub mandibular glands removed and parotid glands

which has helped tremendously but not alleviated the issue.

Early intervention has been the key for us. Riley has had speech therapy

privately twice a week and in addition, 90 minutes a week in school since she

was diagnosed. It is a long road. You really don't know how your child will

present which for me is one of the most difficult things. So hopefully, all

will turn out well. Good luck

christina

________________________________

> To: polymicrogyria

> From: langelo@...

> Date: Tue, 15 Jan 2008 21:13:45 +0000

> Subject: Bilateral Perisylvian Polymicrogyria

>

>

> My son was diagnosed with BPP in Novemeber 2007. We noticed that he

> had " low tone " at around 4-5 months and were referred to Early

> Intervention. We began working with them on a weekly basis to

> strengthen his muscles and build his motor skills. When he wasn't

> sitting on his own at 7 months, he was referred for a Neuro consult.

> All his labs came back " normal " until we received the results of the

> MRI. We were told that he would be developmentally delayed and most

> likely have speech issues, but all the information was very vague

> and some did not apply to our son.

>

> We arranged for a second opinion at the Walsh Lab at Children's

> Hospital in Boston. We were told that although the PMG is there, it

> is atypical, mild and doesn't look like " classic textbook " PMG.

> Encouraging, but didn't change much.

>

> As with most kids with this syndrome, everyone presents

> differently. He babbles and is very vocal. He doesn't have problems

> with swallowing, but is just getting used to chewing crunchy, thick

> foods. His low tone and delayed motor skills continue to be the

> biggest challenge right now.

>

> I joined this group because my husband and I feel like we have just

> been sent out into open sea in a canoe. We cannot get any answers

> that we haven't already heard/know. We do everything we possibly can

> for the little guy, medically, physically, etc., but I guess it has

> come down to faith and acceptance...we seem to be finding ourselves

> a little short these days.

>

>

>

> Messages in this topic

_________________________________________________________________

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[Guest guest]

Your son sounds alot like my son Dakota he is now 4 years old he was drooling

since birth and the doctors went through all these things like its teething its

stomach problems finally i said there is something wrong and they reffered him

to ot and pt because then she noticed he was doing toe walking this was when he

was about 2 years old and he was a bit delayed on sitting crawling walking then

when he went for evaluations to pt and ot they sent us to a special rehab

theripist and she said he wasnt using his arm properly and she thought maybe he

had mild cerebral palsy and sent him to get an mri done and it showed BPP,

hypoplasia of the optic nerves and absents of the septum pelucidum. from there

he saw a genetic doctor a neurologist had an ear test done eye doctors had eye

surgery but out of all those doctors i still feel like i dont no alot they all

say you have to wait and see and they all said it is mild he eats but alot comes

out of his mouth he can walk but he falls

alot due to the spasticity in his legs he can use his hand but its spastic to

so its hard for him he has a little bit of an issue with trunk control but its

mild they dont understand that yes its mild and yes im thankful for that but

with all those things going on it makes it really hard for him to have a normal

day he works everyday to do normal things he got into a first steps program out

here (in missouri) and now he goes to the early childhood center that has been

more helpfull than any of those doctors have and at 4 years old now he can talk

its still hard to understand but he is saying 3 word sentences he wears leg

braces and the toe walking isnt as bad though he still does it and still falls

alot he is finaly starting to color he still has alot of oral motor problems but

they arent half as bad as they were when we started out if you can go through a

school board and get your son into an early childhood program thats the best

advise i can give and dont let people

think you dont deserve answers and help because its mild its your child and you

have the right to worry about whats going on and look stuff up on the internet

thats how i found most of my answers there are people out there that no alot

more about these brain malformations than at least i was led to believe good

luck to you its a hard road to go down and you really have to fight i hope that

i was helpful and if you ever want to talk im here. -evie

a99diva wrote: My son was diagnosed with BPP in

Novemeber 2007. We noticed that he

had " low tone " at around 4-5 months and were referred to Early

Intervention. We began working with them on a weekly basis to

strengthen his muscles and build his motor skills. When he wasn't

sitting on his own at 7 months, he was referred for a Neuro consult.

All his labs came back " normal " until we received the results of the

MRI. We were told that he would be developmentally delayed and most

likely have speech issues, but all the information was very vague

and some did not apply to our son.

We arranged for a second opinion at the Walsh Lab at Children's

Hospital in Boston. We were told that although the PMG is there, it

is atypical, mild and doesn't look like " classic textbook " PMG.

Encouraging, but didn't change much.

As with most kids with this syndrome, everyone presents

differently. He babbles and is very vocal. He doesn't have problems

with swallowing, but is just getting used to chewing crunchy, thick

foods. His low tone and delayed motor skills continue to be the

biggest challenge right now.

I joined this group because my husband and I feel like we have just

been sent out into open sea in a canoe. We cannot get any answers

that we haven't already heard/know. We do everything we possibly can

for the little guy, medically, physically, etc., but I guess it has

come down to faith and acceptance...we seem to be finding ourselves

a little short these days.

[Guest guest]

is 15 months old as of January 5th. He currently is able to

sit on his own for anywhere from 5-10 minutes before he just gets

tired and falls over. He likes to play " stand up/sit down " , but

cannot yet walk or crawl. He babbles like crazy and loves to make

noise, but doesn't have any specific words that he uses

consistently. When we practice consanant sounds with him, he watches

us intently, but can't seem to figure out how to get his mouth to

make that sound, so he just smiles and laughs. His big sister makes

him belly laugh all the time. He now loves sitting at the dinner

table with us (in his high chair) and taking small bites of bread or

pasta. He seems to really like doing what we are doing, and focuses

on watching us chew. My heart skipped a beat at the restaurant we

were at the other night when leaned forward on my lap to take a

bite from the piece of bread I was holding. He doesn't really have

much in the way of fine motor skills yet, but seeing him purposely

lean forward and open his mouth for a bite seemed monumental to me.

This week has been particularly hard as we had our first appointment

with the experts at Children's on the 14th, which also happened to

be our daughter Sophia's ninth birthday. So striking a balance of

emotions was difficult. The 18th marks the 3rd anniversary of our

daughter 's death. She was stillborn at 38.5 weeks. So this is

the week of highs and lows and emotional overload.

>

> My son, who is 2 ½ also has BPP.

>

> We found out at around 4/5 months old when he started having

seizures.

>

> I am sure you will find most of the your answers (if there are

answers)

> here. This group is wonderful at helping and guiding in the right

> directions. Although like you said, each child is different.

has PMG

> on 80% of his brain, but is doing great comparatively speaking.

He is

> awesome.

>

>

>

>

>

>

>

> HYPERLINK " http://www.danielspranger.com " www.danielspranger.com

>

>

>

> _____

>

> From: polymicrogyria

[mailto:polymicrogyria ]

> On Behalf Of a99diva

> Sent: Tuesday, January 15, 2008 4:14 PM

> To: polymicrogyria

> Subject: Bilateral Perisylvian Polymicrogyria

>

>

>

> My son was diagnosed with BPP in Novemeber 2007. We noticed that

he

> had " low tone " at around 4-5 months and were referred to Early

> Intervention. We began working with them on a weekly basis to

> strengthen his muscles and build his motor skills. When he wasn't

> sitting on his own at 7 months, he was referred for a Neuro

consult.

> All his labs came back " normal " until we received the results of

the

> MRI. We were told that he would be developmentally delayed and

most

> likely have speech issues, but all the information was very vague

> and some did not apply to our son.

>

> We arranged for a second opinion at the Walsh Lab at Children's

> Hospital in Boston. We were told that although the PMG is there,

it

> is atypical, mild and doesn't look like " classic textbook " PMG.

> Encouraging, but didn't change much.

>

> As with most kids with this syndrome, everyone presents

> differently. He babbles and is very vocal. He doesn't have

problems

> with swallowing, but is just getting used to chewing crunchy,

thick

> foods. His low tone and delayed motor skills continue to be the

> biggest challenge right now.

>

> I joined this group because my husband and I feel like we have

just

> been sent out into open sea in a canoe. We cannot get any answers

> that we haven't already heard/know. We do everything we possibly

can

> for the little guy, medically, physically, etc., but I guess it

has

> come down to faith and acceptance..-.we seem to be finding

ourselves

> a little short these days.

>

>

>

>

> No virus found in this incoming message.

> Checked by AVG Free Edition.

> Version: 7.5.503 / Virus Database: 269.19.2/1221 - Release Date:

1/12/2008

> 2:04 PM

>

>

>

> No virus found in this outgoing message.

> Checked by AVG Free Edition.

> Version: 7.5.503 / Virus Database: 269.19.2/1221 - Release Date:

1/12/2008

> 2:04 PM

>

>

>

>

[Guest guest]

Go, !! :oD

I'm right there with you about the mixture of emotions. Sometimes I

think the only emotion I get to have is the one where ya dance under

the rainbow as the storm rages on. It's good, in it's own way, but

exhausting, no?

Blessings to you and your striving little guy.