seizures

March 1, 1999

Hi Sally,

This is a response for the woman you wrote in for:

I would say to this mother that I am always very wary of *professionals* who

state things like they are indisputable fact. I have not heard of large

numbers of Charge kids having seizures. Some have them, some don't. I had a

nurse case manager tell me once she thought Austin was having petit mal

seizures because he was staring and blinking a few times while she was there.

Not only did this upset me (I didn't know what types of seizures were

possible), I also thought is was inappropriate to state it as a fact. His

behaviors have always been due to the deafblindness issues. He was finding

ways to stimulate his vision. He still does stuff like this in school and

home.

I don't think that the constant movement statement is true either. It reminds

me of something one of our not-so-great therapists once told me. She said

that if we only had Austin walk around our house in one direction (going from

living room, kitchen, dining room and back in a circle) then his brain would

get *programmed* somehow to always go in that direction. I thought that

sounded ridiculous and asked her to provide studies that indicated that was

true. None were produced.

Anyhow, last year Austin did have one seizure. It was a febrile seizure and

scared the heck out of us. His temp. spiked high and he had a grand mal that

was very serious. But he was sicker than a dog, too, with the flu. I had it

first and it was awful. Tests after the seizure showed normal brain activity.

If this mother is concerned she would be better off seeing a neurologist and

even getting a second opinion so that the school isn't telling her what her

child *has*. You'd think Perkins would have more sense and more knowledge

then other places would. Even if this child is not deafblind, blind children

still do a lot of self-stimulation to and with their vision.

Hope this helps her some.

Jacque Clifton

Austin's mom (CHaRgE)

KS

March 1, 1999

Hi Everyone, Happy March!

I just got off the telephone with a mom who is not (yet) on this list. She

asked me a couple of questions and I suggested we ask you experts on the

list to give her a broad range of experience. She thought that was a great

idea.

#1. Do any of your kids have seizures? If so, what kind do they have?

What types of testing have your kids undergone, what types of medications

are they on, etc. etc? The school tells her they see small seizures at

school so she has seen a neurologist and he did testing that came out

negative. This mom is a nurse so knows what to look for, but also admits

she may be in denial about seizures. She is curious to know your

perspectives. She has spoken to Bernstein (sp) at Perkins who

said almost half of their CHARGE kids have seizures. So, what do you all

suggest? What have you experienced? She doesn't know where to turn. H E

L P

#2. About balance! Someone told her that because balance was poor, our

CHARGERS like to be in constant motion, because it is difficult to be

still. Has anyone heard of this before?

Thanks in advance for your input. I tole her I would hold replies and when

she gets her connection back on line, I would forward replies to her.

Sally Prouty

MN (17)

Sally Prouty

mndb@...

March 1, 1999

My son n is 9 yrs. It was suspected when he was about 4 that he suffered

from Petitmal Seizures, because he teachers said that he just kind of space out

and have to be brought back to attention or the task in which he was doing. We

had tests run and a MRI done (both of which he had to be sedated for) they both

yielded negative results. Later the conclusion drawn was that he just had a

small attention span which has gotten considerably better with age.

As for balance. Because of his bilaterial hearing loss, he has poor balance. He

also had no protective skills where he could instinctively put his hand out to

protect his face and break his fall. At one point, he had to wear a helmet

because he fell a lot and/or loss his balance when walking and would hit a

table, the wall, etc. resulting in many, many trips to the emergency room for

stitches, and/or staples. He is much, much better now and we are thankful.

There was no excessive need for motion. Now however, I do notice that he walks

around in circles sometimes, seemingly in his own world for a span of about 5

miuntes. Then he will sit and watch T.V.

>>> Sally Prouty 03/01 9:56 AM >>>