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,

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]

Jody,

My daughter MacKenzie, who's 6, has no semicircular canals either. This

didn't seem to stop her independent walking though, she was walking at 18

months. She now rides her bike, with training wheels, rollerblades and began

to iceskate last year.

With that said, I must comment that she has had many accidents. Stitches,

hematomas, broken nose and black eyes are fairly common here. It's a really

tough balance to let them go and try to protect them. MacKenzie's balance

seems to flucuate along with her vision, so we never know how she'll get

along from one day to the next.

She also refuses to stop, give up or even be cautious about what she's

doing so it's usually quite an adventure.

I suggest investing in a good helmet and safety/sport glasses when your

little one decides to go.

Jeanie

mom to MacKenzie 6 CHARGE, Tyler 12, & Zachary10

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[Guest guest]

Jody,

My daughter MacKenzie, who's 6, has no semicircular canals either. This

didn't seem to stop her independent walking though, she was walking at 18

months. She now rides her bike, with training wheels, rollerblades and began

to iceskate last year.

With that said, I must comment that she has had many accidents. Stitches,

hematomas, broken nose and black eyes are fairly common here. It's a really

tough balance to let them go and try to protect them. MacKenzie's balance

seems to flucuate along with her vision, so we never know how she'll get

along from one day to the next.

She also refuses to stop, give up or even be cautious about what she's

doing so it's usually quite an adventure.

I suggest investing in a good helmet and safety/sport glasses when your

little one decides to go.

Jeanie

mom to MacKenzie 6 CHARGE, Tyler 12, & Zachary10

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[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]

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

>

>

>

[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

>

>

>