RE: funky eye thing -- seizure?/spinning?

June 13, 2001

DeEtte...

I'm sure many on the list will remember, but Sev had his very first

convulsive seizures EVER right after the first time I tried spinning with

him. Freaked me out TERRIBLY! I thought for sure I had broken him. I've

since learned that you do have to be careful spinning a child who has

seizures. There are other ways to get the vestibular input and you better

believe I use them! Rolling doesn't seem to bother him at all...have they

tried just rolling in a blanket and unrolling her? So sorry to hear

this...I know how upsetting and freaky it can be. Did you ask Dr. B for

thoughts? On a different note, I did tell him about the B6...at first he

just kept saying I had the dose wrong. I knew I didn't. Now he wants to

monitor Sev's liver function and says he can't be held accountable for this

'B6' mess. I just laughed. He says the highest dose he ever uses is

100mg/day period. I also asked about the DMG...he rolled his eyes and said

'this stuff' (meaning anything alternative) scared him. In my mind, I

thought " but the AED's don't? " OH well...at least he knows! Nan

----Original Message Follows----

Reply-To: ketogenic

To: " 'ketogenic ' " <ketogenic >

Subject: funky eye thing -- seizure?/spinning?

Date: Wed, 13 Jun 2001 19:37:56 -0700

Okay. . .so I'm freaked out again. . .

Last week, went back to her old OT and did very well both of two

sessions. Today was another story. The OT was doing a lot of spinning with

her and noticed that one of her eyes was wandering and moving independently

and that it took awhile to " come back. " She was completely alert and aware

-- it was just that her eyes were " funky. " Later, as she transitioned to

speech therapy, she just started crying uncontrollably and they couldn't get

her to calm down or tell them what was wrong. They're wondering if the eye

thing was a seizure and if the crying was an " after effect. "

Have you experienced anything like this? The OT also wants to know if she

should be spinning her. . .although in the past it had never been a problem,

nor was it last week.

I'm going to (reluctantly) call the neuro -- just afraid that he'll say go

up on meds, the diet isn't working or order more scary tests that will turn

up nothing.

Any thoughts would be appreciated. . . other than that she's doing so well.

.. .I just can't bear the thought that we're heading into a new type of

seizure pattern.

FYI, she's just getting over a virus and we're very close to the end of the

Lamictal wean (we're at one tablet and drop to 1/2 on Friday). . .so that

could be playing into this.--DeEtte

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June 13, 2001

DeEtte:

I'm not probablly the best person to give you advice since I have lost so

much faith in Neuros and Ped's that I tend to leave them out of it till I am

sure.

But..........I would stop the spinning for a bit and see if that helps. I

also have experience with that Lamictal wean and that may be your problem.

If you call (may-be you should, I hate to give advice) they may up the meds

and you will never know.

Go with your heart. We took many chances in the last year with .

Previous to this we did every-thing the Neuro told us. But now we know that

can be seizure free without the meds, and he can learn in school and

live a ((normal)) life.

Hugs

Diane

funky eye thing -- seizure?/spinning?

> Okay. . .so I'm freaked out again. . .

>

> Last week, went back to her old OT and did very well both of two

> sessions. Today was another story. The OT was doing a lot of spinning

with

> her and noticed that one of her eyes was wandering and moving

independently

> and that it took awhile to " come back. " She was completely alert and

aware

> -- it was just that her eyes were " funky. " Later, as she transitioned to

> speech therapy, she just started crying uncontrollably and they couldn't

get

> her to calm down or tell them what was wrong. They're wondering if the

eye

> thing was a seizure and if the crying was an " after effect. "

>

> Have you experienced anything like this? The OT also wants to know if she

> should be spinning her. . .although in the past it had never been a

problem,

> nor was it last week.

>

> I'm going to (reluctantly) call the neuro -- just afraid that he'll say go

> up on meds, the diet isn't working or order more scary tests that will

turn

> up nothing.

>

> Any thoughts would be appreciated. . . other than that she's doing so

well.

> . .I just can't bear the thought that we're heading into a new type of

> seizure pattern.

>

> FYI, she's just getting over a virus and we're very close to the end of

the

> Lamictal wean (we're at one tablet and drop to 1/2 on Friday). . .so that

> could be playing into this.--DeEtte

>

> " The Ketogenic Diet....a realistic treatment option, NOT just a last

resort! "

>

> List is for parent to parent support only.

> It is important to get medical advice from a professional

keto team!

> Subscribe: ketogenic-subscribe

> Unsubscribe: ketogenic-unsubscribe

>

June 14, 2001

D,

I'd watch the spinning & see if it happens again. I think it was Nan

that had a bad experience with the spinning (ER visit if I remember

correctly), Nan? Just my thoughts.

Kathy in Tennessee

Mom to - 6 - Keto kid since 02/00, Med free, seizures 95% reduced

Mom to 'lil sis, a - 3

" Even to your old age and gray hairs I am He, I am He who will sustain

you. I have made you and I will carry you; I will sustain you and I will

rescue you. "

Isaiah 46:4

On Wed, 13 Jun 2001 19:37:56 -0700 " Person, DeEtte "

writes:

> Okay. . .so I'm freaked out again. . .

>

> Last week, went back to her old OT and did very well both of

> two

> sessions. Today was another story. The OT was doing a lot of

> spinning with

> her and noticed that one of her eyes was wandering and moving

> independently

> and that it took awhile to " come back. " She was completely alert

> and aware

> -- it was just that her eyes were " funky. " Later, as she

> transitioned to

> speech therapy, she just started crying uncontrollably and they

> couldn't get

> her to calm down or tell them what was wrong. They're wondering if

> the eye

> thing was a seizure and if the crying was an " after effect. "

>

> Have you experienced anything like this? The OT also wants to know

> if she

> should be spinning her. . .although in the past it had never been a

> problem,

> nor was it last week.

>

> I'm going to (reluctantly) call the neuro -- just afraid that he'll

> say go

> up on meds, the diet isn't working or order more scary tests that

> will turn

> up nothing.

>

> Any thoughts would be appreciated. . . other than that she's doing

> so well.

> . .I just can't bear the thought that we're heading into a new type

> of

> seizure pattern.

>

> FYI, she's just getting over a virus and we're very close to the end

> of the

> Lamictal wean (we're at one tablet and drop to 1/2 on Friday). . .so

> that

> could be playing into this.--DeEtte

>

> " The Ketogenic Diet....a realistic treatment option, NOT just a

> last resort! "

>

> List is for parent to parent support only.

> It is important to get medical advice from a

> professional keto team!

> Subscribe: ketogenic-subscribe

> Unsubscribe: ketogenic-unsubscribe

>

June 14, 2001

D,

I'd watch the spinning & see if it happens again. I think it was Nan

that had a bad experience with the spinning (ER visit if I remember

correctly), Nan? Just my thoughts.

Kathy in Tennessee

Mom to - 6 - Keto kid since 02/00, Med free, seizures 95% reduced

Mom to 'lil sis, a - 3

" Even to your old age and gray hairs I am He, I am He who will sustain

you. I have made you and I will carry you; I will sustain you and I will

rescue you. "

Isaiah 46:4

On Wed, 13 Jun 2001 19:37:56 -0700 " Person, DeEtte "

writes:

> Okay. . .so I'm freaked out again. . .

>

> Last week, went back to her old OT and did very well both of

> two

> sessions. Today was another story. The OT was doing a lot of

> spinning with

> her and noticed that one of her eyes was wandering and moving

> independently

> and that it took awhile to " come back. " She was completely alert

> and aware

> -- it was just that her eyes were " funky. " Later, as she

> transitioned to

> speech therapy, she just started crying uncontrollably and they

> couldn't get

> her to calm down or tell them what was wrong. They're wondering if

> the eye

> thing was a seizure and if the crying was an " after effect. "

>

> Have you experienced anything like this? The OT also wants to know

> if she

> should be spinning her. . .although in the past it had never been a

> problem,

> nor was it last week.

>

> I'm going to (reluctantly) call the neuro -- just afraid that he'll

> say go

> up on meds, the diet isn't working or order more scary tests that

> will turn

> up nothing.

>

> Any thoughts would be appreciated. . . other than that she's doing

> so well.

> . .I just can't bear the thought that we're heading into a new type

> of

> seizure pattern.

>

> FYI, she's just getting over a virus and we're very close to the end

> of the

> Lamictal wean (we're at one tablet and drop to 1/2 on Friday). . .so

> that

> could be playing into this.--DeEtte

>

> " The Ketogenic Diet....a realistic treatment option, NOT just a

> last resort! "

>

> List is for parent to parent support only.

> It is important to get medical advice from a

> professional keto team!

> Subscribe: ketogenic-subscribe

> Unsubscribe: ketogenic-unsubscribe

>

June 14, 2001

D,

I'd watch the spinning & see if it happens again. I think it was Nan

that had a bad experience with the spinning (ER visit if I remember

correctly), Nan? Just my thoughts.

Kathy in Tennessee

Mom to - 6 - Keto kid since 02/00, Med free, seizures 95% reduced

Mom to 'lil sis, a - 3

" Even to your old age and gray hairs I am He, I am He who will sustain

you. I have made you and I will carry you; I will sustain you and I will

rescue you. "

Isaiah 46:4

On Wed, 13 Jun 2001 19:37:56 -0700 " Person, DeEtte "

writes:

> Okay. . .so I'm freaked out again. . .

>

> Last week, went back to her old OT and did very well both of

> two

> sessions. Today was another story. The OT was doing a lot of

> spinning with

> her and noticed that one of her eyes was wandering and moving

> independently

> and that it took awhile to " come back. " She was completely alert

> and aware

> -- it was just that her eyes were " funky. " Later, as she

> transitioned to

> speech therapy, she just started crying uncontrollably and they

> couldn't get

> her to calm down or tell them what was wrong. They're wondering if

> the eye

> thing was a seizure and if the crying was an " after effect. "

>

> Have you experienced anything like this? The OT also wants to know

> if she

> should be spinning her. . .although in the past it had never been a

> problem,

> nor was it last week.

>

> I'm going to (reluctantly) call the neuro -- just afraid that he'll

> say go

> up on meds, the diet isn't working or order more scary tests that

> will turn

> up nothing.

>

> Any thoughts would be appreciated. . . other than that she's doing

> so well.

> . .I just can't bear the thought that we're heading into a new type

> of

> seizure pattern.

>

> FYI, she's just getting over a virus and we're very close to the end

> of the

> Lamictal wean (we're at one tablet and drop to 1/2 on Friday). . .so

> that

> could be playing into this.--DeEtte

>

> " The Ketogenic Diet....a realistic treatment option, NOT just a

> last resort! "

>

> List is for parent to parent support only.

> It is important to get medical advice from a

> professional keto team!

> Subscribe: ketogenic-subscribe

> Unsubscribe: ketogenic-unsubscribe

>

June 15, 2001

Hi DeEtte

Hannah's seizures that involve eye deviation always cause both eyes to

go in the same direction, so I cant comment on just one eye roving about.

The crying may have been a totally different issue for , unrelated to

the eye movement.

As for spinning her in therapy, I suppose if there is no obvious

problem, then why not? If there are seizures consistently presented after

spinning then I'd be inclined to stop this activity, and perhaps try again

at another time after some stability had been achieved, just to see if it is

a trigger. I bet you have a gut feeling as to whether or not spinnning is a

problem, and you are obviously very aware of the effects of viruses and med

weans, so sounds like you are keeping a careful eye on things. I understand

the reluctance to not tell the neuro. I did the same thing when withdrawal

sz crept in after the lamictal wean was completed, and when I did mention

them I was offered more drugs just as I expected (I refused, and it all

settled eventually)

FWIW, Hannah absolutely LOVES spinning. She smiles SO big that her face

nearly falls in half. Her favourite is to be held in someone's arms and to

spin through about 120 degrees, back and forth, over and over. Going the

full 360 degrees is just as good, and I alternate direction each spin, but I

dont do too many repeats in case she throws up. Seizures have never

been a problem after this activity for Hannah.

Try not to get too anxious. If it is a new seizure type, it will become

obvious soon enough, and you will eventually have more info to go on when

making choices about how to deal with them. If it isn't seizures then you

may have other issues to follow up with other relevant doctors. You are a

good mother and I'm sure you will get to the bottom of this eventually.

Take care now,

(Hannahs Mum, Australia)

----- Original Message -----

> Last week, went back to her old OT and did very well both of two

> sessions. Today was another story. The OT was doing a lot of spinning

with

> her and noticed that one of her eyes was wandering and moving

independently

> and that it took awhile to " come back. " She was completely alert and

aware

> -- it was just that her eyes were " funky. " Later, as she transitioned to

> speech therapy, she just started crying uncontrollably and they couldn't

get

> her to calm down or tell them what was wrong. They're wondering if the

eye

> thing was a seizure and if the crying was an " after effect. "

>

> Have you experienced anything like this? The OT also wants to know if she

> should be spinning her. . .although in the past it had never been a

problem,

> nor was it last week.

>

> I'm going to (reluctantly) call the neuro -- just afraid that he'll say go

> up on meds, the diet isn't working or order more scary tests that will

turn

> up nothing.

>

> Any thoughts would be appreciated. . . other than that she's doing so

well.

> . .I just can't bear the thought that we're heading into a new type of

> seizure pattern.

>

> FYI, she's just getting over a virus and we're very close to the end of

the

> Lamictal wean (we're at one tablet and drop to 1/2 on Friday). . .so that

> could be playing into this.--DeEtte

June 15, 2001

Thanks, . . . you've helped me feel much better about this. FYI, she went to OT yesterday and everything was just fine. So -- I'm not thinking spinning is a trigger. . .never really did. . . but perhaps something funky was going on coincidentally. I guess I was just hyper paranoid because it was this same OT who first raised the issue of seizures with me three years ago -- she noticed some minor "spaces" with her. I talked to my pediatrician and we both completely pooh-pooh'd it because she showed absolutely no signs of seizure activity. . . six months later she was on a Life Flight to Phoenix Children's Hospital. So, maybe it just reminded me of that and scared me even more than it would have normally.--D

***

As for spinning her in therapy, I suppose if there is no obviousproblem, then why not? If there are seizures consistently presented afterspinning then I'd be inclined to stop this activity, and perhaps try againat another time after some stability had been achieved, just to see if it isa trigger.

June 17, 2001

Glad to help DeEtte. It's always good to question what we think we are seeing in our kids. Keeps us on our toes so hopefully we wont miss anything small but important. If it turns out to be nothing then there's no harm done. Good to hear you are feeling more relaxed about the OT time.