Re: Vestibular System Question

June 15, 2007

Beth,

Welcome to the listserv! Our daughter Kennedy walked holding our hand only

for a LONG time - probably about 7-8 months. She gradually went from

needing to hold both hands, to one hand, before taking off on her own. She

was three when she walked independently. She has no semi-circular canals

either. She used a pony walker to help with her confidence as well. I know

some of the other kids have also used a K-walker with some success. The one

good thing about Kennedy is that she has a healthy fear so she is very

cautious and looks for handrails, etc when she needed them. She still looks

for rails on stairs; it's been an evolving awareness for her about slowing

down when she switches terrains or is on a new surface. I'm sure is a

smart cookie and will learn how to compensate for his lack of balance, these

guys seem really adept at coping successfully in spite of seemingly

impossible odds at times!

Cheers,

Mom to Kennedy (9)

www.chargesyndrome.info

>

> Hi, I'm new to the site and had a question about how your children

> have done in terms of learning to walk safely. Our son, , was born

> with CHARGE in January 2005 and started taking steps just before

> Christmas last year (right before he was two). His vestibular system

> is all but gone, but he must have some in order to be able to balance

> at all. He is getting steadier, but still falls often indoors and

> outdoors he can't walk alone (which is pretty frustrating to a two

> year old who wants to be independent). A weighted backpack or weighted

> t-shirt helps him some, but I am just curious what you all have

> experienced in terms of your children with CHARGE learning to walk

> SAFELY. I've learned there's a big difference between walking and

> walking safely! I understand most children with CHARGE have problems

> with their vestibular system, but have not been able to find anyone

> who can really tell us what to expect. Our doctors and therapists are

> optimistic that he'll improve, but I'm sure you all have better

> experience. Thanks for any info you have to share!

>

> Beth

>

--

" It is far better to grasp the universe as it really is than to persist in

delusion, however satisfying and reassuring. " --Carl Sagan

June 15, 2007

My son walked independently a few weeks after he got some intensive

cranio-sacral therapy. You can find a practitioner through the Upledger

Institute's web-site @ http://www.upledger.com Can't guarantee it will work for

your son but it is worth a try.

a mom to 9yr CHARGEr and Quintin 6yr seizure prone

prichardbeth bethprichard@...> wrote:

Hi, I'm new to the site and had a question about how your children

have done in terms of learning to walk safely. Our son, , was born

with CHARGE in January 2005 and started taking steps just before

Christmas last year (right before he was two). His vestibular system

is all but gone, but he must have some in order to be able to balance

at all. He is getting steadier, but still falls often indoors and

outdoors he can't walk alone (which is pretty frustrating to a two

year old who wants to be independent). A weighted backpack or weighted

t-shirt helps him some, but I am just curious what you all have

experienced in terms of your children with CHARGE learning to walk

SAFELY. I've learned there's a big difference between walking and

walking safely! I understand most children with CHARGE have problems

with their vestibular system, but have not been able to find anyone

who can really tell us what to expect. Our doctors and therapists are

optimistic that he'll improve, but I'm sure you all have better

experience. Thanks for any info you have to share!

Beth

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

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June 15, 2007

Beth,

Your son sounds like my daughter, MacKenzie, at the same age. I'm not sure there

is a really fool proof way to encourage his walking. MacKenzie walked

independantly by the time she was 2, but she experienced many black eyes,

stitches, hematomas and even several broken noses. She simply wouldn't tolerate

a helmet and it kind of got in the way of her glasses, hearing aids and later

cochlear implant.

We modified the environment as much as possible. such as making sure there was

no sharp corners or things for her to trip on. This wasn't easy considering she

was hooked up to an IV pole 20 hours a day. She would hold on the pole with one

hand and I think it actually helped her balance. Exercises to improve their

protective reflex is also important and your PT should be able to suggest some.

MacKenzie wasn't really able to manuver independantly outside until she was

around 6. In unfamiliar places she will still take my hand. Her accidents have

become less frequent, but last summer she was running, simply fell on her face

with no saving reflex and broke her nose. One more thing to consider is a mouth

guard. While riding her bike, with a standard helmet, she fell and knocked her

front teeth out. I guess I was only thinking about protecting her head and not

her face.

Good luck.

Jeanie

mom to MacKenzie 9 CHARGE

June 15, 2007

hello everybody,

you all sound like almost similar what I had when I was little like swallowing

problem, balance problem, breathing problem and etc. I thought I would share

with you to add at conference if you are be there.

share a thought,

Michele s.

Re: Vestibular System Question

Beth,

Your son sounds like my daughter, MacKenzie, at the same age. I'm not sure

there is a really fool proof way to encourage his walking. MacKenzie walked