Re: Children Not Eating & Weird Eye Blinking/Squinting

[Guest guest]

Sharon,

Thanks for the reply. What is a telemetry? Sorry to be so ignorant.

And, does you daughter have any kind of autistic symptoms. I am concerned that

Avery may be autistic.

Thank you.

Becky

At 10:28 AM 2/28/2000 -0800, you wrote:

>

>

>ON the squinting and blinking.... has actually been hooked up to a 24

hour telemetry, so that we could show the staff how visual triggers will cause

seizure activity. We can use the introduction of a toy with stripes, or hole

patterns... but the same effect can be manifested by JESS by squinting and

looking out at light or up at church lights

>(depending on how desperate she is for that stim release). We have had to

remove all mini-blinds, screens, striped clothing and especially patterns with

white and black... they are really triggers. She will stare at something for 10

- 20 seconds and if you don't cover her eyes, she will have a grand mal seizure.

This took us a while to discover,

>longer to prove... and once proven, the whole resident team at UCLA was amazed

but absolutely no help in making sense of it. This may be very isolated to my

little partner, but if it sounds familiar... I'll be glad to share any history

we have. Sharon C.

>

>Steve Fitzgerald wrote:

>

>>

>>

>> YES, YES, YES!! does the exact same thing! He used to sort of squint

and cross his eyes. I thought he was doing it because it was fun to see how the

world looked cross-eyed. Now he blinks a lot, particularly when he's walking or

having fun...kind of looks like a nervous tick, not a seizure.

>>

>> Becky Goodell wrote:

>>

>> >

>> >

>> > ,

>> > I guess it was me asking about Avery. He sometimes stares off into space

and I cannot get his attention and he is doing this weird blinking and squinting

thing. He seems to do it when he is happy or excited. He just closes his eyes

and they squint really bad like if you try to both close and open your eyes at

the same time. Does that make sense?

>> > Anyhow, that is what we were talking about.

>> > No EEG has ever been done and he has had no other seizure history.

>> > That was about it.

>> >

>> > Becky

>

>

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[Guest guest]

Becky Goodell wrote:

>

>

> Sharon,

> Thanks for the reply. What is a telemetry? Sorry to be so ignorant.

> And, does you daughter have any kind of autistic symptoms. I am concerned that

Avery may be autistic.

> Thank you.

> Becky

Becky,

Telemetry was just Jess' 24hour EEG being hooked up to a video-camera to connect

physical images with the EEG readings. This is a great way to correlate seizure

triggers, seizure characteristics etc. It's sometimes tough on the little ones

(Jess was six) because they are confined to bed where the camera is fixed on

them... but we played puzzles,

playdough, Sega and musical toys and made it through. Yes, Jess does have lots

of autistic tendencies... but it took a lot to have professionals look at them

because she is such an overtly affectionate child that you have to understand

the spectrum to watch for the tendencies in a child with her personality. She

does perseverate A LOT!!! It can be

language where she repeats a phrase over and over again (echolalia) or an

action... kicking a ball or 26 tennis balls from one room to another (we

actually inked the alphabet on the balls to give some sense of learning to the

perseveration)... now we say what's the letter... she says it then kicks... " oh

the tricks:-) " Jess also occasionally spins or

tries to stim (visually on patterns) which will in her case cause a seizure...

I did have the opportunity to go to the DAN! conference on Autism at Cherry

Hill, NJ in 99 and I was VERY impressed by the paradigm shift they presented on

autism... IT IS a molecular biological disease.... and therefore, for me... it

makes real sense that kids with metabolic problems will exhibit autistic

symptoms and as we strengthen the health of

these children through supplements and Nutrition... we will see improvement. I

really believe there is a lot of strong research with autism that now impacts

how we view and treat this disorder. If you haven't seen the DAN! protocol, just

use that search term and I think you'll be impressed with some of the info...

Again, I think it's part and parcel of

little bodies that have metabolic problems... nothing independent, just part of

the underlying disorder. (but that's just my very own little theory :-)

Sharon C.

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