Walking

[Guest guest]

my daughter did not start walking until she was around 28 months old. She

is still pretty unsteady and falls alot even at her current age of 3 1/2 years

old. She does not talk very well, just aproximations of words. She does

say about ten words very well.

Christy Cormier

[Guest guest]

My son was twenty-two months when he started to walk. He started cruising

around 9 months.

Patty, mom to Wesley who is now fifteen yrs old.

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[Guest guest]

,

Sam has BPP also. He never crawled at that age due to the weakness of his

left arm; that's great that Evan is crawling. Sam started walking at 2

yrs old.

Best wishes,

Christie, mom to Sam (15 yrs old)

> Hi,

>

> My son evan is 2yrs and has bilateral perisylvan polymicrogyria and he

> is progressing well. He crawls and has been doing so for about 1 year,

> he pulls to stand and has used a walker at his PT appts. I am a member

> of a list for children with hemiplegia but most of the kids on their

> had a stroke which caused the hemiplegia CP whereas Evan's BPP is what

> caused his cerebral palsy. My question is that I was wondering how old

> your children were when they walked(if they have started walking yet)

> and did they use a walker and for how long? Don't get me wrong I am

> very grateful that Evan is making the progress that he is and if he

> uses a walker and never walks independently then that will be just

> fine, but I am just curious as to what other children with BPP have

> done.

>

> Thanks

>

> mom 2 Evan 2yrs BPP, spastic hemiplegia CP

>

>

[Guest guest]

walked at 2 1/2. He didn't use a walker at home but used one as part of

PT.

Pat and ,BPP

gabeandevansmom wrote:

Hi,

My son evan is 2yrs and has bilateral perisylvan polymicrogyria and he

is progressing well. He crawls and has been doing so for about 1 year,

he pulls to stand and has used a walker at his PT appts. I am a member

of a list for children with hemiplegia but most of the kids on their

had a stroke which caused the hemiplegia CP whereas Evan's BPP is what

caused his cerebral palsy. My question is that I was wondering how old

your children were when they walked(if they have started walking yet)

and did they use a walker and for how long? Don't get me wrong I am

very grateful that Evan is making the progress that he is and if he

uses a walker and never walks independently then that will be just

fine, but I am just curious as to what other children with BPP have

done.

Thanks

mom 2 Evan 2yrs BPP, spastic hemiplegia CP

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

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[Guest guest]

a,

has bilateral perisylvian pmg. He started walking at 18 months.

Hope this helps,

Krista

>

[Guest guest]

Hi, My name is Nadine, mum to Melody who has bilateral frontal PMG. I

am from N.Z, my husband is Romanian and we live in Romania and work

with streetchildren. Melody is 2 1/2, and was diagnosed about 6

months ago when we went back to N.Z for the birth of our second

daughter. I noticed from the photos posted that most of the kids are

in wheelchairs.Although Melody can't stand up on the spot, she can

walk around and is very ambitious to do things by herself. What have

been other peoples experience with their kids walking? Does the

floppiness get worse over time or better?

[Guest guest]

Hi, Nadine. My name is Kate. My son, Ethan. is 3 1/2 now and also has

bilateral PMG. He started walking just before he turned 3, and is getting

stronger and stronger. He uses his increased tone to toe-walk on his right

side. He never really stood still for long periods of time at first, but now he

has his balance and stands and walks very easily. He is scheduled for surgery

to have his tendon lengthened on June 6th. We are hoping that this will help

him walk with a more even gait with both feet on the floor. We found the more

he walked, the more he improved. He is very self-sufficient. I would say his

greatest delay is his speech. He is very communicative, but mostly with vowel

sounds and sign. As he gets stronger, his speech continues to change and

improve, so we have great hope!!

Does Nadine receive physical therapy? Our therapists have really helped Ethan

improve. I can't believe the change in him since he was diagnosed at 15 months.

The one thing all the doctors we have met agree on is that no one can predict

what a child with PMG will do. So we just continue to believe that Ethan will

do everything a typical child can do...he'll just do it in his own time and in

his own way.

Hope this was helpful,

Kate, Mom to Ethan (3) and (5)

cerbunadine wrote:

Hi, My name is Nadine, mum to Melody who has bilateral frontal PMG. I

am from N.Z, my husband is Romanian and we live in Romania and work

with streetchildren. Melody is 2 1/2, and was diagnosed about 6

months ago when we went back to N.Z for the birth of our second

daughter. I noticed from the photos posted that most of the kids are

in wheelchairs.Although Melody can't stand up on the spot, she can

walk around and is very ambitious to do things by herself. What have

been other peoples experience with their kids walking? Does the

floppiness get worse over time or better?

[Guest guest]

Lily, now 9, was adopted at 7 months from Vietnam has BPP and

arthrogryposis, an orthopaedic condition. And amazingly, she walked at age 2.

She runs,

skips, jumps rope, swims....her balance is not great and she tends to trip

quite a bit. She has AFOs which she hates to wear but they do give her more

stability. We did do PT and OT for years. Best wishes, Kandy

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[Guest guest]

Hi Nadine,

First of all, welcome to the group!

I am sure you are starting to see that our kids all have a wide range

of amazing abilities.

Our experience with walking is that , who has BPP, started to walk

at 18 months. He now runs and climbs anything and everything in sight.

He is still technically considered hypotonic (low tone) and has what

therapists would consider an " awkward gait " , but those are just medical

opinions/diagnosis and don't impact , or his quality of life ;-)

Again, welcome to the list!

Krista

mom to , 5 (almost 6!!), BPP

[Guest guest]

Hi Nadine, welcome and God love you for working with children who are in

desparate need of help. I hate to just give you the same pat answer that we all

too well have come to understand, which is " no two children with PMG are the

same " . So it's hard to say if the floppiness Melody is experiencing will get

worse or better. At the risk of sounding trite; we're not really all in the

same boat here. We're in the same waters though, navigating through the seas

of Neurology, Orthopedics, disorders of speech, swallowing, feeding, mobility,

epilepsy, etc. While we may not all hit these waters at the same time, or may

avoid them all together you will still find someone here that has been " there "

none the less.

We've come to learn that while polymicrogyria is a single malformation, it

affects each child uniquely and sometimes there are additional malformation that

come with it, just as unique. You will very likely find people here who are

dealing with the same issues you are as a parent. Still, we are at a loss for

predicting how polymicrogyria has or will affect your child (or ours). But

please know that whatever you encounter, you will find understanding here and

usually someone who had dealt with whatever you may be trying to deal with too,

Penny - Step Mom to nela (15 yo with unilateral PMG-PNH and Lennox

Gastaut Syndrome)

cerbunadine wrote:

Hi, My name is Nadine, mum to Melody who has bilateral frontal PMG. I

am from N.Z, my husband is Romanian and we live in Romania and work

with streetchildren. Melody is 2 1/2, and was diagnosed about 6

months ago when we went back to N.Z for the birth of our second

daughter. I noticed from the photos posted that most of the kids are

in wheelchairs.Although Melody can't stand up on the spot, she can

walk around and is very ambitious to do things by herself. What have

been other peoples experience with their kids walking? Does the

floppiness get worse over time or better?

[Guest guest]

Hi Nadine,

We have the opposite problem with Torin, he has never been floppy but stiff

with back arching etc, when he was small. He has taken a while to gain

balance but can now crawl and pull himself to stand but walking isalong way

off, The professionals are sure he will walk in his own time. He is

hemiplagic and I think he has very little consciousness of his right side,

he forgets it. His crawling means he throws his arm forward. He is getting

some little use in his right hand. He will possibly never use it as anything

more than a helper hand, which we will be pleased with, He is profoundly

deaf and has now had a ochlear Implant which is working well and he can

heaqr and is trying to communicate. We do not know how well he will speak

but we are hopefull. He seems a bright little man and has the memory of an

elephant, so we are all hopeful for his future. As you can see all of the

kids are so different, forgot to mention he does not sleep much, funnly this

is the hardest of all the problems to deal with. My daughter only gets a

night sleep when I take him and I dont get the sleep, but boy do I love him,

he is so funny.

Grandma Carol Torin 2 PMG hemiplagia deaf, my little redhaired darling (if

he is asleep).

_____

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[Guest guest]

My son Nik started walking at 3 yrs of age and he has the same diagnosis as

Melody. He is now 11 and runs and plays baseball just fine. He is not floppy

and does not fall a lot either. I will send you pics if you would like.

Kim

> Hi, My name is Nadine, mum to Melody who has bilateral frontal PMG. I

> am from N.Z, my husband is Romanian and we live in Romania and work

> with streetchildren. Melody is 2 1/2, and was diagnosed about 6

> months ago when we went back to N.Z for the birth of our second

> daughter. I noticed from the photos posted that most of the kids are

> in wheelchairs.Although Melody can't stand up on the spot, she can

> walk around and is very ambitious to do things by herself. What have

> been other peoples experience with their kids walking? Does the

> floppiness get worse over time or better?

>

>

>