Re: Walking and Absent Semicircular Canals

[Guest guest]

Jack does have semi-circular canals but he still had/has balance issues.He

did not walk independently until 4yrs4mths and still cannot run. He walks with

the classic wide legged, flat footed CHARGE walk.

Elaine, mum to Elise (12yrs) & Jack (7yrs) CHaRGE

Scotland

[Guest guest]

Wow, awesome information. We just found out recently that 's

semicircular canals are missing, too. He just started standing w/o holding

on to anything and is beginning to pick up the pace while walking at just

over 2 years old. Hills are tough on him. He has to concentrate so hard on

flat surfaces that he doesn't like to walk long distance outside. He walks

the house fine, though, due to visual cues and places to grab.

A bike!!! Oh, that makes my day.

Thanks!

Bo

_____

From: Ludwig

Sent: Saturday, August 28, 2004 9:16 PM

To: CHARGE

Subject: Re: Walking and Absent Semicircular Canals

Hi Jody,

I didn't find out that Karlee's semicircular canals were missing until she

was 14. She didn't walk independently until she was 2 and 1/2. It think it

was more the constant surgery thing that kept her walking more than by the

semicircular canals. She fell a lot and also when we walked, she would hold

on to my hand pretty securely. She was much less dependant on me for

balance after she did the HANDLE exercises. (age 10)

When she was in grade school she could not run in a straight line (or walk).

When she ran in the 50 yd. dash she started in the far right lane and

finished in the far left lane. In 8th grade she ran the 100 m dash (on the

track team) and finished last - however the real victory was that she

finished in her lane!

Karlee does ride a bike. She rides without falling, but is a little

" weavy " . We usually use the FM hearing aid system so that I can warn her of

traffic (we try to ride where there is as little as possible).

Our first biking was done with the trailer. That was a great way to get

started.

I really think she is walking pretty straight now compared even to a couple

of years ago.

Because of the balance problems at a younger age we used to do these things:

- used small wooden boxes at school for her to put her feet on - so there

was no dangling ... gave her more upper body stability for writing etc.

- when studying at home I would have her lie in the bean bag - again taking

out the factor of her brain having to hold up her body - so she could

concentrate better.

Hope this helps

from IL (Karlee 16 years)

Walking and Absent Semicircular Canals

>

>Ethan had a CT scan of his ears in June and found out that his semicircular

canals were absent. I understand that this is common with some CHARGE kids.

Ethan is 26 mos old. He crawls, pulls to stand, stands supported and

cruises. We have a walker which he uses minimally indoors and prefers to

use it outside and has recently gotten orthotics. What can I expect for

Ethan's walking given his missing semicircular canals? Will he be able to

stand independently and take a few steps independently or will the walker be

essential for many years? I know Ethan is still very young to be walking

independently, but I'm just wondering what to expect.

>

>Thanks for your input.

>

>Jody- mom to Ethan (2 years - ChARGE) and (5)

>

>__________________________________________________

>

[Guest guest]

Hi Jody,

I didn't find out that Karlee's semicircular canals were missing until she

was 14. She didn't walk independently until she was 2 and 1/2. It think it

was more the constant surgery thing that kept her walking more than by the

semicircular canals. She fell a lot and also when we walked, she would hold

on to my hand pretty securely. She was much less dependant on me for

balance after she did the HANDLE exercises. (age 10)

When she was in grade school she could not run in a straight line (or walk).

When she ran in the 50 yd. dash she started in the far right lane and

finished in the far left lane. In 8th grade she ran the 100 m dash (on the

track team) and finished last - however the real victory was that she

finished in her lane!

Karlee does ride a bike. She rides without falling, but is a little

" weavy " . We usually use the FM hearing aid system so that I can warn her of

traffic (we try to ride where there is as little as possible).

Our first biking was done with the trailer. That was a great way to get

started.

I really think she is walking pretty straight now compared even to a couple

of years ago.

Because of the balance problems at a younger age we used to do these things:

- used small wooden boxes at school for her to put her feet on - so there

was no dangling ... gave her more upper body stability for writing etc.

- when studying at home I would have her lie in the bean bag - again taking

out the factor of her brain having to hold up her body - so she could

concentrate better.

Hope this helps

from IL (Karlee 16 years)

Walking and Absent Semicircular Canals

>

>Ethan had a CT scan of his ears in June and found out that his semicircular

canals were absent. I understand that this is common with some CHARGE kids.

Ethan is 26 mos old. He crawls, pulls to stand, stands supported and

cruises. We have a walker which he uses minimally indoors and prefers to

use it outside and has recently gotten orthotics. What can I expect for

Ethan's walking given his missing semicircular canals? Will he be able to

stand independently and take a few steps independently or will the walker be

essential for many years? I know Ethan is still very young to be walking

independently, but I'm just wondering what to expect.

>

>Thanks for your input.

>

>Jody- mom to Ethan (2 years - ChARGE) and (5)

>

>__________________________________________________

>

[Guest guest]

We never looked at Patty's semicircular canals but I have a feeling they are

different from normal. She has horrible balance. She walked at 2 1/2 with a

walker but quickly grew out of that. She seldom walked outside on grass until

she was about 3. She wouldn't crawl either because of sensory issues.

Patty seldom fell though. As a walker she was slow and deliberate. She took

little chances. At the age of 19 she still takes little physical chances. By

that I mean her balance and safety. Otherwise she takes tons and tons of

chances. We joke sometimes that she is disabled to keep her safe. Otherwise I

am

sure she would be bungee jumping, riding motorcycles, and jumping out of

airplanes.

But the point is Patty tries everything and learned tons. It just took more

learning time. Just the other day we went for a hike in the woods on an

unknown but well traveled path. The uneven ground messes her up but she did

tremendous and was totally independant. We went about a mile!

Bonnie, mom to Kris 21, Patty 19 CHARGE, and wife to