Re: absent semi-circular canals

[Guest guest]

Oh I wish you luck. Patty didn't walk till she was 2 1/2 and when she did

it was on a floor. I forget when she walked on grass or even up a slight with

nothing she could bump into. She used a child walker but learned quickly.

Her balance had always been bad but not as bad as some.

Funny thing is last year at the age of 21 when she had an MRI for an

upcoming surgery they found she was missing, or they couldn't find!, her

semicircular canals. Glad I didn't know that when she was little. It would

have

terrified me.

Try not to worry about things too much and try not look to far down that

road.

Bonnie, Mom to Kris 24, Patty CHARGE 22 and wife to

************************************** See what's free at http://www.aol.com.

[Guest guest]

. They all learn to walk. and I wrote an article

about vestibular problems for DeafBlind Perspectives. You can find it

at

http://www.tr.wou.edu/tr/dbp/jan2005.htm#charge

Tim Hartshorne, father of .

________________________________

From: CHARGE [mailto:CHARGE ] On Behalf

Of

Sent: Monday, April 30, 2007 12:08 PM

To: CHARGE

Subject: absent semi-circular canals

Hi. It's been a few months since I've posted due to lack of having

enough time. My son Luke is 2 1/2 with CHARGE. We just found out the

results of the CT scan he had done on his inner ear last week. It

showed that he has little or no semi-circular canals. I thought I was

prepared for this result, since he obviously has balance issues, but I

was really hoping he would have at least some part of the semi-circular

canals present. Now, I'm really worried about how much more difficult

things will be for him since he has almost no sense of balance. I'm

hoping someone can give me some feedback on the potential for kids in

this situation. What can I expect? Walking, I hope? Thanks.

Snyder, mom to Luke (2 1/2 yrs., CHARGE)

www.caringbridge.org/mn/lukejoseph

[Guest guest]

Thanks Tim. The article is very imformative. Do you remember Jon

and I from the conference in MN a couple of weeks ago? I just want

to tell you how much we got out of those two days and everything you

had to offer on the topic of behavior. It was excellent information

for us and it was nice to finally meet you and put a face to your

name.

Snyder (Luke's mom, age 2 1/2, CHARGE)

www.caringbridge.org/mn/lukejoseph

>

> . They all learn to walk. and I wrote an

article

> about vestibular problems for DeafBlind Perspectives. You can find

it

> at

>

> http://www.tr.wou.edu/tr/dbp/jan2005.htm#charge

>

>

>

> Tim Hartshorne, father of .

>

>

>

> ________________________________

>

> From: CHARGE [mailto:CHARGE ] On

Behalf

> Of

> Sent: Monday, April 30, 2007 12:08 PM

> To: CHARGE

> Subject: absent semi-circular canals

>

>

>

> Hi. It's been a few months since I've posted due to lack of having

> enough time. My son Luke is 2 1/2 with CHARGE. We just found out

the

> results of the CT scan he had done on his inner ear last week. It

> showed that he has little or no semi-circular canals. I thought I

was

> prepared for this result, since he obviously has balance issues,

but I

> was really hoping he would have at least some part of the semi-

circular

> canals present. Now, I'm really worried about how much more

difficult

> things will be for him since he has almost no sense of balance. I'm

> hoping someone can give me some feedback on the potential for kids

in

> this situation. What can I expect? Walking, I hope? Thanks.

>

> Snyder, mom to Luke (2 1/2 yrs., CHARGE)

> www.caringbridge.org/mn/lukejoseph

>

>

>

>

>

>

[Guest guest]

my son cole has the same problem and he is starting it walk at 2.5 years old,

We just started hippo theaphy and we hope this will increase his balance.

proudmary730@...> wrote:

Hi. It's been a few months since I've posted due to lack of having

enough time. My son Luke is 2 1/2 with CHARGE. We just found out the

results of the CT scan he had done on his inner ear last week. It

showed that he has little or no semi-circular canals. I thought I was

prepared for this result, since he obviously has balance issues, but I

was really hoping he would have at least some part of the semi-circular

canals present. Now, I'm really worried about how much more difficult

things will be for him since he has almost no sense of balance. I'm

hoping someone can give me some feedback on the potential for kids in

this situation. What can I expect? Walking, I hope? Thanks.

Snyder, mom to Luke (2 1/2 yrs., CHARGE)

www.caringbridge.org/mn/lukejoseph

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

Ahhh...imagining that irresistible " new car " smell?

Check outnew cars at Yahoo! Autos.

[Guest guest]

And our daughter is nearly 7 and has no semicircular canals. She walked

with a frame for a while and gave it up at age 3-1/2. Now she walks (though

for safety we still hold her hand in the streets), jumps (in that funny

CHARGE sort of way and by the way loves trampolining though of course we

have a safety net), climbs (no comment on that one but let's just say my

heart attack is well and truely overdue) etc. Her balance is still

relatively poor and she does fall more than the average child her age but

she still manages to skip around the house, go up and down stairs (with

stair rail), carry out little errands for us etc.

Keep working at the mobility and he hopefully will surprise you when you

least expect it. Of course all the kids are different so equally keep an

open mind and deal with things as they arise, and the very best of luck.

Flo

>

> my son cole has the same problem and he is starting it walk at 2.5 years

> old,

> We just started hippo theaphy and we hope this will increase his balance.

>

>

> proudmary730@... > wrote:

> Hi. It's been a few months since I've posted due to lack of having

> enough time. My son Luke is 2 1/2 with CHARGE. We just found out the

> results of the CT scan he had done on his inner ear last week. It

> showed that he has little or no semi-circular canals. I thought I was

> prepared for this result, since he obviously has balance issues, but I

> was really hoping he would have at least some part of the semi-circular

> canals present. Now, I'm really worried about how much more difficult

> things will be for him since he has almost no sense of balance. I'm

> hoping someone can give me some feedback on the potential for kids in

> this situation. What can I expect? Walking, I hope? Thanks.

>

> Snyder, mom to Luke (2 1/2 yrs., CHARGE)

> www.caringbridge.org/mn/lukejoseph

>

> ---------------------------------

>

>

Flo (UK)

Mum to - CHARGE - (6) and Elly (4)

[Guest guest]

Amelie has absent semi circular canals, she is aged 2 years and 4 months,

and has just started to weight bear

on her legs, she appears to have trouble supporting her upper trunk region.

I believe she will walk but I think we are a long

way off...it doesnt stop her having fun though...good luck Lesley

>

> my son cole has the same problem and he is starting it walk at 2.5 years

> old,

> We just started hippo theaphy and we hope this will increase his balance.

>

>

> proudmary730@... > wrote:

> Hi. It's been a few months since I've posted due to lack of having

> enough time. My son Luke is 2 1/2 with CHARGE. We just found out the

> results of the CT scan he had done on his inner ear last week. It

> showed that he has little or no semi-circular canals. I thought I was

> prepared for this result, since he obviously has balance issues, but I

> was really hoping he would have at least some part of the semi-circular

> canals present. Now, I'm really worried about how much more difficult

> things will be for him since he has almost no sense of balance. I'm

> hoping someone can give me some feedback on the potential for kids in

> this situation. What can I expect? Walking, I hope? Thanks.

>

> Snyder, mom to Luke (2 1/2 yrs., CHARGE)

> www.caringbridge.org/mn/lukejoseph

>

> ---------------------------------

> Ahhh...imagining that irresistible " new car " smell?

> Check outnew cars at Yahoo! Autos.

>

>

[Guest guest]

great news on the trach just looked at his siter i didnt walk till three i

dotn think no semicirucula canals

>

> Oh I wish you luck. Patty didn't walk till she was 2 1/2 and when she

> did

> it was on a floor. I forget when she walked on grass or even up a slight

> with

> nothing she could bump into. She used a child walker but learned quickly.

> Her balance had always been bad but not as bad as some.

>

> Funny thing is last year at the age of 21 when she had an MRI for an

> upcoming surgery they found she was missing, or they couldn't find!, her

> semicircular canals. Glad I didn't know that when she was little. It would

> have

> terrified me.

>

> Try not to worry about things too much and try not look to far down that

> road.

>

>

>

> Bonnie, Mom to Kris 24, Patty CHARGE 22 and wife to

>

> ************************************** See what's free at

> http://www.aol.com.

>

>

[Guest guest]

Hi ,

My daughter, Karlee is 19. We did not know that she did not have semi-circular

canals until she was 14. She did walk late. (however like the other children

she had several surgieries by then) She walked at 2 1/2. She did fall alot.

She did learn to ride a bike. I would not put her on a bike in traffic, but she

does pretty well.

She also was on the dance team in our high school. She did pretty well with the

turns and fast moves. You could tell she was just a little off - but in our

small community everyone pulled for her.

Karlee does have a problem with fatigue. We have done a lot of investigation

with the medical professionals as to why?

I have decided that the fatigue is because her body works overtime to keep her

balance. Don't know if I am right - but we have looked at a lot of things.

At school she has had a respite room. When she tires she can go there and rest.

There are many days that she takes a nap at school. - even in high school. The

h.s teachers call it Karlee's apartment. She also has a microwave and

refrigerator - as we have always encouraged more eating!

She has a special gait when she walks. She will be going to prom next Saturday.

We bought her flat shoes to help her with her balance. She does wear heels

sometimes but we can tell her balance is affected.

Hope that helps.

from IL (Karlee 19)

absent semi-circular canals

Hi. It's been a few months since I've posted due to lack of having

enough time. My son Luke is 2 1/2 with CHARGE. We just found out the

results of the CT scan he had done on his inner ear last week. It

showed that he has little or no semi-circular canals. I thought I was

prepared for this result, since he obviously has balance issues, but I

was really hoping he would have at least some part of the semi-circular

canals present. Now, I'm really worried about how much more difficult

things will be for him since he has almost no sense of balance. I'm

hoping someone can give me some feedback on the potential for kids in

this situation. What can I expect? Walking, I hope? Thanks.

Snyder, mom to Luke (2 1/2 yrs., CHARGE)

www.caringbridge.org/mn/lukejoseph

[Guest guest]

Hi ,

My daughter, Karlee is 19. We did not know that she did not have semi-circular

canals until she was 14. She did walk late. (however like the other children

she had several surgieries by then) She walked at 2 1/2. She did fall alot.

She did learn to ride a bike. I would not put her on a bike in traffic, but she

does pretty well.

She also was on the dance team in our high school. She did pretty well with the

turns and fast moves. You could tell she was just a little off - but in our

small community everyone pulled for her.

Karlee does have a problem with fatigue. We have done a lot of investigation

with the medical professionals as to why?

I have decided that the fatigue is because her body works overtime to keep her

balance. Don't know if I am right - but we have looked at a lot of things.

At school she has had a respite room. When she tires she can go there and rest.

There are many days that she takes a nap at school. - even in high school. The

h.s teachers call it Karlee's apartment. She also has a microwave and

refrigerator - as we have always encouraged more eating!

She has a special gait when she walks. She will be going to prom next Saturday.

We bought her flat shoes to help her with her balance. She does wear heels

sometimes but we can tell her balance is affected.

Hope that helps.

from IL (Karlee 19)

absent semi-circular canals

Hi. It's been a few months since I've posted due to lack of having

enough time. My son Luke is 2 1/2 with CHARGE. We just found out the

results of the CT scan he had done on his inner ear last week. It

showed that he has little or no semi-circular canals. I thought I was

prepared for this result, since he obviously has balance issues, but I

was really hoping he would have at least some part of the semi-circular

canals present. Now, I'm really worried about how much more difficult

things will be for him since he has almost no sense of balance. I'm

hoping someone can give me some feedback on the potential for kids in

this situation. What can I expect? Walking, I hope? Thanks.

Snyder, mom to Luke (2 1/2 yrs., CHARGE)

www.caringbridge.org/mn/lukejoseph

[Guest guest]

sounds like she does great!! tim didn't walk until 3 1/2--and dancing is a

sight to behold!!

maria

absent semi-circular canals

Hi. It's been a few months since I've posted due to lack of having

enough time. My son Luke is 2 1/2 with CHARGE. We just found out the

results of the CT scan he had done on his inner ear last week. It

showed that he has little or no semi-circular canals. I thought I was

prepared for this result, since he obviously has balance issues, but I

was really hoping he would have at least some part of the semi-circular

canals present. Now, I'm really worried about how much more difficult

things will be for him since he has almost no sense of balance. I'm

hoping someone can give me some feedback on the potential for kids in

this situation. What can I expect? Walking, I hope? Thanks.

Snyder, mom to Luke (2 1/2 yrs., CHARGE)

www.caringbridge.org/mn/lukejoseph

[Guest guest]

sounds like she does great!! tim didn't walk until 3 1/2--and dancing is a

sight to behold!!

maria

absent semi-circular canals

Hi. It's been a few months since I've posted due to lack of having

enough time. My son Luke is 2 1/2 with CHARGE. We just found out the

results of the CT scan he had done on his inner ear last week. It

showed that he has little or no semi-circular canals. I thought I was

prepared for this result, since he obviously has balance issues, but I

was really hoping he would have at least some part of the semi-circular

canals present. Now, I'm really worried about how much more difficult

things will be for him since he has almost no sense of balance. I'm

hoping someone can give me some feedback on the potential for kids in

this situation. What can I expect? Walking, I hope? Thanks.

Snyder, mom to Luke (2 1/2 yrs., CHARGE)

www.caringbridge.org/mn/lukejoseph

[Guest guest]

,

will we get Karlee's prom picture from this year, too????

pam

Re: absent semi-circular canals

Hi ,

My daughter, Karlee is 19. We did not know that she did not have semi-circular

canals until she was 14. She did walk late. (however like the other children

she had several surgieries by then) She walked at 2 1/2. She did fall alot.

She did learn to ride a bike. I would not put her on a bike in traffic, but she

does pretty well.

She also was on the dance team in our high school. She did pretty well with the

turns and fast moves. You could tell she was just a little off - but in our

small community everyone pulled for her.

Karlee does have a problem with fatigue. We have done a lot of investigation

with the medical professionals as to why?

I have decided that the fatigue is because her body works overtime to keep her

balance. Don't know if I am right - but we have looked at a lot of things.

At school she has had a respite room. When she tires she can go there and rest.

There are many days that she takes a nap at school. - even in high school. The

h.s teachers call it Karlee's apartment. She also has a microwave and

refrigerator - as we have always encouraged more eating!

She has a special gait when she walks. She will be going to prom next Saturday.

We bought her flat shoes to help her with her balance. She does wear heels

sometimes but we can tell her balance is affected.

Hope that helps.

from IL (Karlee 19)

absent semi-circular canals

Hi. It's been a few months since I've posted due to lack of having

enough time. My son Luke is 2 1/2 with CHARGE. We just found out the

results of the CT scan he had done on his inner ear last week. It

showed that he has little or no semi-circular canals. I thought I was

prepared for this result, since he obviously has balance issues, but I

was really hoping he would have at least some part of the semi-circular

canals present. Now, I'm really worried about how much more difficult

things will be for him since he has almost no sense of balance. I'm

hoping someone can give me some feedback on the potential for kids in

this situation. What can I expect? Walking, I hope? Thanks.

Snyder, mom to Luke (2 1/2 yrs., CHARGE)

www.caringbridge.org/mn/lukejoseph

[Guest guest]

-

Aubrie is also very fatigued. We don't know for sure about her semicircular

canals. But I do know her balance is off, her muscle tone is weak, etc. We

think those motor issues contribute to her fatigue, but so do her hearing

and vision. It takes a lot of effort to attend to everything when your

senses are compromised.

I'm sort of encouraged to know that Karlee still has a respite room. Aubrie

does - and I am comforted to know that it is possible to continue it on

indefinitely. We also encourage lots of eating - never mind any school

rules about snacks!

How early does Karlee have to go to bed? Aubrie still goes to bed at 7:30

or 8 in order to get up at 6am.

Michele W

Aubrie's mom

[Guest guest]

I just want to thank all those who responded to my concerns about

Luke not having semi-circular canals. Your comments are very

reassuring and helpful. I will try to stay positive and take it day

by day.

Snyder, Luke's mom (age 2/12, CHARGE)

www.caringbridge.org/mm/lukejoseph)

>

> Hi ,

>

> My daughter, Karlee is 19. We did not know that she did not have

semi-circular canals until she was 14. She did walk late. (however

like the other children she had several surgieries by then) She

walked at 2 1/2. She did fall alot.

>

> She did learn to ride a bike. I would not put her on a bike in

traffic, but she does pretty well.

>

> She also was on the dance team in our high school. She did pretty

well with the turns and fast moves. You could tell she was just a

little off - but in our small community everyone pulled for her.

>

> Karlee does have a problem with fatigue. We have done a lot of

investigation with the medical professionals as to why?

>

> I have decided that the fatigue is because her body works overtime

to keep her balance. Don't know if I am right - but we have looked

at a lot of things.

>

> At school she has had a respite room. When she tires she can go

there and rest. There are many days that she takes a nap at

school. - even in high school. The h.s teachers call it Karlee's

apartment. She also has a microwave and refrigerator - as we have

always encouraged more eating!

>

> She has a special gait when she walks. She will be going to prom

next Saturday. We bought her flat shoes to help her with her

balance. She does wear heels sometimes but we can tell her balance

is affected.

>

> Hope that helps.

>

> from IL (Karlee 19)

> absent semi-circular canals

>

>

> Hi. It's been a few months since I've posted due to lack of

having

> enough time. My son Luke is 2 1/2 with CHARGE. We just found out

the

> results of the CT scan he had done on his inner ear last week. It

> showed that he has little or no semi-circular canals. I thought I

was

> prepared for this result, since he obviously has balance issues,

but I

> was really hoping he would have at least some part of the semi-

circular

> canals present. Now, I'm really worried about how much more

difficult

> things will be for him since he has almost no sense of balance.

I'm

> hoping someone can give me some feedback on the potential for

kids in

> this situation. What can I expect? Walking, I hope? Thanks.

>

> Snyder, mom to Luke (2 1/2 yrs., CHARGE)

> www.caringbridge.org/mn/lukejoseph

>

>

>

>

>

>

[Guest guest]

,

Kennedy does not have semi-circular canals either, she is very careful

because she understands that her balance is not the same as others (esp on

stairs, etc) but she has done 3 years of dance, walks, runs, and

participates in intramurals at school and also in Brownies. We weren't sure

at Luke's age what it'd be like though as she still wasn't walking but she

started at 3 years old and hasn't stopped since!

Hope this helps,

www.chargesyndrome.info

>

> I just want to thank all those who responded to my concerns about

> Luke not having semi-circular canals. Your comments are very

> reassuring and helpful. I will try to stay positive and take it day

> by day.

>

> Snyder, Luke's mom (age 2/12, CHARGE)

> www.caringbridge.org/mm/lukejoseph)

>

> >

> > Hi ,

> >

> > My daughter, Karlee is 19. We did not know that she did not have

> semi-circular canals until she was 14. She did walk late. (however

> like the other children she had several surgieries by then) She

> walked at 2 1/2. She did fall alot.

> >

> > She did learn to ride a bike. I would not put her on a bike in

> traffic, but she does pretty well.

> >

> > She also was on the dance team in our high school. She did pretty

> well with the turns and fast moves. You could tell she was just a

> little off - but in our small community everyone pulled for her.

> >

> > Karlee does have a problem with fatigue. We have done a lot of

> investigation with the medical professionals as to why?

> >

> > I have decided that the fatigue is because her body works overtime

> to keep her balance. Don't know if I am right - but we have looked

> at a lot of things.

> >

> > At school she has had a respite room. When she tires she can go

> there and rest. There are many days that she takes a nap at

> school. - even in high school. The h.s teachers call it Karlee's

> apartment. She also has a microwave and refrigerator - as we have

> always encouraged more eating!

> >

> > She has a special gait when she walks. She will be going to prom

> next Saturday. We bought her flat shoes to help her with her

> balance. She does wear heels sometimes but we can tell her balance

> is affected.

> >

> > Hope that helps.

> >

> > from IL (Karlee 19)

> > absent semi-circular canals

> >

> >

> > Hi. It's been a few months since I've posted due to lack of

> having

> > enough time. My son Luke is 2 1/2 with CHARGE. We just found out

> the

> > results of the CT scan he had done on his inner ear last week. It

> > showed that he has little or no semi-circular canals. I thought I

> was

> > prepared for this result, since he obviously has balance issues,

> but I

> > was really hoping he would have at least some part of the semi-

> circular

> > canals present. Now, I'm really worried about how much more

> difficult

> > things will be for him since he has almost no sense of balance.

> I'm

> > hoping someone can give me some feedback on the potential for

> kids in

> > this situation. What can I expect? Walking, I hope? Thanks.

> >

> > Snyder, mom to Luke (2 1/2 yrs., CHARGE)

> > www.caringbridge.org/mn/lukejoseph

> >

> >

> >

> >

> >

> >

[Guest guest]

,

I was glad to see your post. I haven't read about

Luke in some time and was wondering how you have been.

Vinny's first MRI suggested absent or very small

semi-circular canals. His second one clearly showed

that his semi-circular canals are there, but

" diminutive in appearance. " His neurologist said that

they are there, but incredibly small. We were worried

about walking and other balance issues, too.

The good news is that Vinny's physical therapy seems

to be working. I am sure that his persistence,

nutrition (about 1100 calories a day), and health (no

recent hospitalizations or anesthesia) have all teamed

up for once which has allowed him to make great

strides these last 3 months. He can now cruise around

furniture on his own and walk with someone holding one

of his hands. This is all very new. So despite

diminutive semi-circular canals, along with a handful

of other MRI abnormalities, he has managed to overcome

the odds.

ina, mom to Luca (nearly 4) & Vinny (nearly 2

years old!! w/ cHARgE)

--- proudmary730@...> wrote:

> Hi. It's been a few months since I've posted due to

> lack of having

> enough time. My son Luke is 2 1/2 with CHARGE. We

> just found out the

> results of the CT scan he had done on his inner ear

> last week. It

> showed that he has little or no semi-circular

> canals. I thought I was

> prepared for this result, since he obviously has

> balance issues, but I

> was really hoping he would have at least some part

> of the semi-circular

> canals present. Now, I'm really worried about how

> much more difficult

> things will be for him since he has almost no sense

> of balance. I'm

> hoping someone can give me some feedback on the

> potential for kids in

> this situation. What can I expect? Walking, I

> hope? Thanks.

>

> Snyder, mom to Luke (2 1/2 yrs., CHARGE)

> www.caringbridge.org/mn/lukejoseph

>

>

>

________________________________________________________________________________\

____

Never miss an email again!

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[Guest guest]

Hi ina,

It's nice that you remember Luke and I. Sounds like Vinny's doing

awesome! Luke's been doing pretty well. Luke is also cruising, and

sitting now too, but he seems to have no fear of falling. He's

starting to learn how to get down from standing and out of sitting,

but sometimes he just goes straight back, so I have to put pillows

behind him or catch him. With his balance being off, I'm not sure

how to instill that fear of falling without letting him fall and get

hurt.

Snyder, Luke's mom, 2 1/2, CHARGE

www.caringbridge.org/mn/lukejoseph

>

> > Hi. It's been a few months since I've posted due to

> > lack of having

> > enough time. My son Luke is 2 1/2 with CHARGE. We

> > just found out the

> > results of the CT scan he had done on his inner ear

> > last week. It

> > showed that he has little or no semi-circular

> > canals. I thought I was

> > prepared for this result, since he obviously has

> > balance issues, but I

> > was really hoping he would have at least some part

> > of the semi-circular

> > canals present. Now, I'm really worried about how

> > much more difficult

> > things will be for him since he has almost no sense

> > of balance. I'm

> > hoping someone can give me some feedback on the

> > potential for kids in

> > this situation. What can I expect? Walking, I

> > hope? Thanks.

> >

> > Snyder, mom to Luke (2 1/2 yrs., CHARGE)

> > www.caringbridge.org/mn/lukejoseph

> >

> >

> >

>

>

>

>

>

______________________________________________________________________

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> Never miss an email again!

> Yahoo! Toolbar alerts you the instant new Mail arrives.

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>

[Guest guest]

ina,

Your boy will walk. My son has the same problem and they compensate. He

walked at 4 years old and it was really wonderful. Wait and see...it will

happen. ck

>

>Reply-To: CHARGE

>To: CHARGE

>Subject: Re: absent semi-circular canals

>Date: Tue, 08 May 2007 22:52:41 -0000

>

>Hi ina,

>

>It's nice that you remember Luke and I. Sounds like Vinny's doing

>awesome! Luke's been doing pretty well. Luke is also cruising, and

>sitting now too, but he seems to have no fear of falling. He's

>starting to learn how to get down from standing and out of sitting,

>but sometimes he just goes straight back, so I have to put pillows

>behind him or catch him. With his balance being off, I'm not sure

>how to instill that fear of falling without letting him fall and get

>hurt.

>

> Snyder, Luke's mom, 2 1/2, CHARGE

>www.caringbridge.org/mn/lukejoseph

>

>

>

> >

> > > Hi. It's been a few months since I've posted due to

> > > lack of having

> > > enough time. My son Luke is 2 1/2 with CHARGE. We

> > > just found out the

> > > results of the CT scan he had done on his inner ear

> > > last week. It

> > > showed that he has little or no semi-circular

> > > canals. I thought I was

> > > prepared for this result, since he obviously has

> > > balance issues, but I

> > > was really hoping he would have at least some part

> > > of the semi-circular

> > > canals present. Now, I'm really worried about how

> > > much more difficult

> > > things will be for him since he has almost no sense

> > > of balance. I'm

> > > hoping someone can give me some feedback on the

> > > potential for kids in

> > > this situation. What can I expect? Walking, I

> > > hope? Thanks.

> > >

> > > Snyder, mom to Luke (2 1/2 yrs., CHARGE)

> > > www.caringbridge.org/mn/lukejoseph

> > >

> > >

> > >

> >

> >

> >

> >

> >

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>

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[Guest guest]

Saw this article in April issue of Wired magazine where they discuss

sensory prosthetics including one that helped people with inner ear

damage restore their balance. This stuff is way in the future but

thought some might find it interesting.

http://www.wired.com/wired/archive/15.04/esp.html

Jeff

>

> Hi. It's been a few months since I've posted due to lack of having

> enough time. My son Luke is 2 1/2 with CHARGE. We just found out the

> results of the CT scan he had done on his inner ear last week. It

> showed that he has little or no semi-circular canals. I thought I was

> prepared for this result, since he obviously has balance issues, but I

> was really hoping he would have at least some part of the semi-circular

> canals present. Now, I'm really worried about how much more difficult

> things will be for him since he has almost no sense of balance. I'm

> hoping someone can give me some feedback on the potential for kids in

> this situation. What can I expect? Walking, I hope? Thanks.

>

> Snyder, mom to Luke (2 1/2 yrs., CHARGE)

> www.caringbridge.org/mn/lukejoseph

>

[Guest guest]

,

We found out that Ethan had no semi circular canals when he was about 2 years

old. He was crawling by then. And from asking the other CHARGE parents (just

like you are doing), we hoped and assumed Ethan would eventually walk

independently. When it seemed like he would only walk with assistance, about 6

months ago, he started taking independent steps. He is still very cautious and

does still rely upon either his walker or holding a hand, but I know he will

eventually be fully independent with walking. I also understand that in the

future he will probably have a cane for use outside the home to help him with

balance and vision. Give it time and when you least expect it, it will happen.

Oh and Ethan was about 4 1/2 when he took his first steps by himself.

Jody - mom to Ethan (ChARGE) and

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

Get your own web address.

Have a HUGE year through Yahoo! Small Business.

[Guest guest]

Very interesting. Thanks. I'll save that one.

> >

> > Hi. It's been a few months since I've posted due to lack of

having

> > enough time. My son Luke is 2 1/2 with CHARGE. We just found

out the

> > results of the CT scan he had done on his inner ear last week.

It

> > showed that he has little or no semi-circular canals. I thought

I was

> > prepared for this result, since he obviously has balance issues,

but I

> > was really hoping he would have at least some part of the semi-

circular

> > canals present. Now, I'm really worried about how much more

difficult

> > things will be for him since he has almost no sense of balance.

I'm

> > hoping someone can give me some feedback on the potential for

kids in

> > this situation. What can I expect? Walking, I hope? Thanks.

> >

> > Snyder, mom to Luke (2 1/2 yrs., CHARGE)

> > www.caringbridge.org/mn/lukejoseph

> >

>

[Guest guest]

Seems like four is a common age for walking for the kids that are

missing their semi-circular canals. Sounds fine to me. Three would

be awesome, but four is OK too. Thanks.

> > >

> > > Hi. It's been a few months since I've posted due to lack of

having

> > > enough time. My son Luke is 2 1/2 with CHARGE. We just found

out the

> > > results of the CT scan he had done on his inner ear last week.

It

> > > showed that he has little or no semi-circular canals. I

thought I was

> > > prepared for this result, since he obviously has balance

issues, but I

> > > was really hoping he would have at least some part of the semi-

circular

> > > canals present. Now, I'm really worried about how much more

difficult

> > > things will be for him since he has almost no sense of

balance. I'm

> > > hoping someone can give me some feedback on the potential for

kids in

> > > this situation. What can I expect? Walking, I hope? Thanks.

> > >

> > > Snyder, mom to Luke (2 1/2 yrs., CHARGE)

> > > www.caringbridge.org/mn/lukejoseph

> > >

> >

> >

>

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