Walking and Absent Semicircular Canals

[Guest guest]

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]

Jody,

Kennedy does not have semi circular canals as well and she walks, runs and goes

to tap and jazz class. She did not walk independently until her third birthday

(literally - at the party)... It was a LOOOOOOOOOOOONG time coming and her

balance is still shot somedays, especially when she is tired but she did/does

it!!!

Weir

Jody Wolfe wrote:

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]

Jody,

Kennedy does not have semi circular canals as well and she walks, runs and goes

to tap and jazz class. She did not walk independently until her third birthday

(literally - at the party)... It was a LOOOOOOOOOOOONG time coming and her

balance is still shot somedays, especially when she is tired but she did/does

it!!!

Weir

Jody Wolfe wrote:

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]

Jody,

Kennedy does not have semi circular canals as well and she walks, runs and goes

to tap and jazz class. She did not walk independently until her third birthday

(literally - at the party)... It was a LOOOOOOOOOOOONG time coming and her

balance is still shot somedays, especially when she is tired but she did/does

it!!!

Weir

Jody Wolfe wrote:

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]

Jody,

I have a 2 year old CHarGEr also named Ethan(cool huh!!) He has the same issues

as your Ethan has. I have never heard of the semicircular canal problem. Ethan

has never had a ct scan to determine that. So I will be making arrangements to

have this done. I have been trying to get to the bottom of his balance issues.

Even his physical thearapist, who works with him twice a week can not figure it

out either. Now I know what his problem might be thanks to you.

Ethan crawls,pulls to stand, and cruises furniture. He has a gait trainer which

has helped him tremendously,He loves to use it outside but not in the house for

some reason. I guess he has more room to run outside.Please! let me know if

there is anything else that I need to know on this issue.

cwalton80@...

Jody Wolfe wrote:

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]

In 2 studies that I am aware of, all the children with CHARGE studied

had either mishapen, malformed, tipped, or absent semi-circular

canals. There are two other organs of balance in the inner ear: the

utricle and sacuale. In a European study on CHARGE, these organs were

shown to be able to take over the function of the semi-circular

canals! Isn't the human body amazing!!

Ann Gloyn

Education Specialist

Canada

> 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]

i hda a lot of trouble with balance when iw as younger but i could walk

pretty early, i ahave always had problems with balance, i still do sorta, i

do dancing and if i didnt go to the gym to keep muscles strong i know id

have bad balance straigh awa..

Re: Walking and Absent Semicircular Canals

> 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

>

>

>