Re: HELP!!! 6 year old rolling eyes A LOT

[Guest guest]

I haven't heard of these particular symptoms being related to Chiari. It sounds

to me more like a type of seizure. There are many kinds and some cause

odd/repetitive body movements and can happen quite a few times in an hour, as

opposed to the ones that come to mind of people going unconscious and jerking

around. It could also be motor tics. The eye rolling especially sounds like

either of these. Notably, my daughter had extreme motor tics (head nod and eye

blink) that were almost constant. Medication actually made it worse, not better.

After her decompression and fusion two weeks ago (which were absolutely

necessary), the biggest change we've noticed is she hasn't had a single tic!

Good luck!

Beth with Ari

Sent from my iPhone

> Hi everyone,

>

> Some of you may remember me. I'm sort of a veteran but have been gone for

quite a while - busy starting a family. I now have 2 boys.

>

> My son, Ethan, is 6. At 4 years old, he was dx with OCTS at TCI. His only

symptom for a long time was random leg/foot pain and ocassional headaches.

>

> About 8 months ago, he started doing this wierd " air intake gasp "

thing...almost like he needed to yawn but couldn't. It would even happen when

resting. It seemed to happen about once/minute or so, and would go on for an

hour or more. And he also started twisting/turning his head, bringing the back

of his head down, as if his neck hurt. And he did say his neck hurt. These

symptoms were consistent/regular and went on for about 6 months.

>

> So 2 months ago, I started him on a controversial medication to help him (I'm

not going to say here what it is). Within 2 weeks, the gasping and neck twisting

were GONE. But now, he has started rolling his eyes. A LOT. They don't " stick "

when they roll. They roll up and quickly come back down. But it's repetitive.

And he is having trouble focusing. It does seem to get worse as the day

progresses. And he says it hurts behind his eyes.

>

> Has anyone else seen this in someone with OTCS/chiari? Obviously, I think he

probably has high ICP. But does anyone have any advice? Someone recommended I

try a sublingual caffeine spray - I ordered it and am waiting. I also have an

order for an MRI - but was hesitating on doing it (why do it if I'm not ready to

go thru with surgery).

>

> On a side note, his little brother who is only 22 months (and is just learning

to talk) has been saying " butt " and " ow " several times per day while holding his

butt (for the last 3 months). Ironically, they both have the birthmark

indicators of OTCS and chiari (Ethan has one on his lower back; Josh has one on

his PCF).

>

>

>

>

[Guest guest]

Dear ,

I do not think Ethan's symptoms are related to Chiari or OTCS. The air

intake/gasp could be something called air hunger. That and the other tic type

behaviors could indicate a neurological problem such as Tourette Syndrome or

something else. You might want to take him to a pediatric neurologist.

Best wishes!

Barbara

Sent from my iPhone

> Hi everyone,

>

> Some of you may remember me. I'm sort of a veteran but have been gone for

quite a while - busy starting a family. I now have 2 boys.

>

> My son, Ethan, is 6. At 4 years old, he was dx with OCTS at TCI. His only

symptom for a long time was random leg/foot pain and ocassional headaches.

>

> About 8 months ago, he started doing this wierd " air intake gasp "

thing...almost like he needed to yawn but couldn't. It would even happen when

resting. It seemed to happen about once/minute or so, and would go on for an

hour or more. And he also started twisting/turning his head, bringing the back

of his head down, as if his neck hurt. And he did say his neck hurt. These

symptoms were consistent/regular and went on for about 6 months.

>

> So 2 months ago, I started him on a controversial medication to help him (I'm

not going to say here what it is). Within 2 weeks, the gasping and neck twisting

were GONE. But now, he has started rolling his eyes. A LOT. They don't " stick "

when they roll. They roll up and quickly come back down. But it's repetitive.

And he is having trouble focusing. It does seem to get worse as the day

progresses. And he says it hurts behind his eyes.

>

> Has anyone else seen this in someone with OTCS/chiari? Obviously, I think he

probably has high ICP. But does anyone have any advice? Someone recommended I

try a sublingual caffeine spray - I ordered it and am waiting. I also have an

order for an MRI - but was hesitating on doing it (why do it if I'm not ready to

go thru with surgery).

>

> On a side note, his little brother who is only 22 months (and is just learning

to talk) has been saying " butt " and " ow " several times per day while holding his

butt (for the last 3 months). Ironically, they both have the birthmark

indicators of OTCS and chiari (Ethan has one on his lower back; Josh has one on

his PCF).

>

>

>

>

[Guest guest]

Hi ,

Have you ever seen what Tourette's Syndrome looks like? The tics sound

exactly like what you are describing, and it makes their little eyes hurt a lot

because the muscles get tired. There are no studies finished yet but many

children with ACM/OTSC/EDS have repetitve tics.

I have many children with ACM/OCTS/EDS and all have Tourette's with several

having that eye tic.

Hope that might help~

>

> Hi everyone,

>

> Some of you may remember me. I'm sort of a veteran but have been gone for

quite a while - busy starting a family. I now have 2 boys.

>

> My son, Ethan, is 6. At 4 years old, he was dx with OCTS at TCI. His only

symptom for a long time was random leg/foot pain and ocassional headaches.

>

> About 8 months ago, he started doing this wierd " air intake gasp "

thing...almost like he needed to yawn but couldn't. It would even happen when

resting. It seemed to happen about once/minute or so, and would go on for an

hour or more. And he also started twisting/turning his head, bringing the back

of his head down, as if his neck hurt. And he did say his neck hurt. These

symptoms were consistent/regular and went on for about 6 months.

>

> So 2 months ago, I started him on a controversial medication to help him (I'm

not going to say here what it is). Within 2 weeks, the gasping and neck

twisting were GONE. But now, he has started rolling his eyes. A LOT. They

don't " stick " when they roll. They roll up and quickly come back down. But

it's repetitive. And he is having trouble focusing. It does seem to get worse

as the day progresses. And he says it hurts behind his eyes.

>

> Has anyone else seen this in someone with OTCS/chiari? Obviously, I think he

probably has high ICP. But does anyone have any advice? Someone recommended I

try a sublingual caffeine spray - I ordered it and am waiting. I also have an

order for an MRI - but was hesitating on doing it (why do it if I'm not ready to

go thru with surgery).

>

> On a side note, his little brother who is only 22 months (and is just learning

to talk) has been saying " butt " and " ow " several times per day while holding his

butt (for the last 3 months). Ironically, they both have the birthmark

indicators of OTCS and chiari (Ethan has one on his lower back; Josh has one on

his PCF).

>

>

>