Re: vocal noises and jerky movements

[Guest guest]

Jayne, this sounds like a seizure. Also, risperdal has the side affect of

ticks. Isn't on that med as well?

Holly

vocal noises and jerky movements

Ever look at your child and wonder, is it Tourette's? What is it?

has been so jerky for a while now, odd noises coming out of his mouth,

jerky movements all over the place, waking up in the middle of the night. He's

10, entering puberty, getting thick in the middle and thighs, and now...now it

is summer - big 'ol change in routine time - yeah me.

Recently had a night that broke my heart. I was trying to tuck him

into bed and his body just wouldn't stop - it was jerking everywhere, his head

moving back and forth, his face contorting in odd expressions, lots of noises

coming out of his mouth and during all of this he's yawning. Clearly so tired

but his body wouldn't stop, his brain wouldn't stop. He thrashed for so long. I

couldn't reach him, he was gone - oblivious to anything I did. When it finally

ended, he was asleep in the blink of an eye. It was like his brain and body

finally shut down and he passed out. Snoring within seconds. So odd.

I am trying to catch it on video so I can take it to the doctor with me.

Anyone else go through this?

Also, does anyone else's child HATE having the hiccups as much as mine? I

think they hurt him, he looks like he's in so much pain, clutches his chest,

says ow, and gets mad.

So much to take care of with his health..........more on that later.

Jayne

[Guest guest]

Jayne!!! No wonder we haven't heard from you. This is breaking my heart

hearing what Mr J is going through. Are these seizures? OMG! As our kids

age, I am not liking what I am hearing...

Liz

[Guest guest]

Dear God, im so sorry you are having to deal with this, poor baby. Praying for

you and hope that you can somehow get to the bottom of things. Leilani

________________________________

To:

Sent: Saturday, June 27, 2009 6:17:39 PM

Subject: vocal noises and jerky movements

Ever look at your child and wonder, is it Tourette's? What is it?

has been so jerky for a while now, odd noises coming out of his mouth,

jerky movements all over the place, waking up in the middle of the night. He's

10, entering puberty, getting thick in the middle and thighs, and now...now it

is summer - big 'ol change in routine time - yeah me.

Recently had a night that broke my heart. I was trying to tuck him into

bed and his body just wouldn't stop - it was jerking everywhere, his head moving

back and forth, his face contorting in odd expressions, lots of noises coming

out of his mouth and during all of this he's yawning. Clearly so tired but his

body wouldn't stop, his brain wouldn't stop. He thrashed for so long. I couldn't

reach him, he was gone - oblivious to anything I did. When it finally ended, he

was asleep in the blink of an eye. It was like his brain and body finally shut

down and he passed out. Snoring within seconds. So odd.

I am trying to catch it on video so I can take it to the doctor with me. Anyone

else go through this?

Also, does anyone else's child HATE having the hiccups as much as mine? I think

they hurt him, he looks like he's in so much pain, clutches his chest, says ow,

and gets mad.

So much to take care of with his health...... ....more on that later.

Jayne

[Guest guest]

Hey Holly and all,

As I re-read my post, I thought it sounded like seizures too. I don't think it

is though, it's like he's just really out of it, lost in his own world. Hard to

put to words, need to get a video of it and post it so you can SEE what I'm

describing.

We had a stay in children's hospital in March and he had an EEG and an MRI then

- but I dropped the ball once we ruled out all the really scary stuff like

Moyamoya, stroke, TIA's, - wanted to get through 's b-day, coming

home, school ending. Now I need to pick the ball back up and follow up with

Neurology. GI wants to scope him and I am terrified to put him under again as

he had a horrible time coming out of his anesthesia this last time after the

MRI, I really thought he had a stroke, it was the scariest thing I've ever been

through, the most helpless feeling a mom could have - not being able to fix it.

Ugh,it makes my stomach hurt just thinking about it. I know I have to do it - I

need to get to the bottom of all his medical stuff. It just sucks sometimes

clearly as we all battle these awful medical issues with our kids.

Of course this rain we are back at again today isn't helping..................

I shall capture the situation on video and post it for you all to decipher!

LOL!

Thanks guys,

Jayne

>

> Jayne, this sounds like a seizure. Also, risperdal has the side affect of

ticks. Isn't on that med as well?

> Holly

[Guest guest]

Ladies,

When our kids get to a healthy point, which clearly has to occur soon or we'll

all go crazy, we must find a way to get together. WE need a picnic. Clearly

life is not a picnic in any way shape or form right now for many of us so we

have to make a picnic of it and get together.

Show of hands, who's having fun right now?

Jayne

>

> Jayne!!! No wonder we haven't heard from you. This is breaking my heart

> hearing what Mr J is going through. Are these seizures? OMG! As our kids

> age, I am not liking what I am hearing...

>

> Liz

>

>

>

[Guest guest]

I am! My kids are still SLEEPING!!! LOL!

Desi

Subject: Re: vocal noises and jerky movements

To:

Date: Sunday, June 28, 2009, 7:48 AM

Ladies,

When our kids get to a healthy point, which clearly has to occur soon or we'll

all go crazy, we must find a way to get together. WE need a picnic. Clearly life

is not a picnic in any way shape or form right now for many of us so we have to

make a picnic of it and get together.

Show of hands, who's having fun right now?

Jayne

>

> Jayne!!! No wonder we haven't heard from you. This is breaking my heart

> hearing what Mr J is going through. Are these seizures? OMG! As our kids

> age, I am not liking what I am hearing...

>

> Liz

>

>

>

[Guest guest]

ahhhh, the BEST feeling - enjoy it Desi!

>

>

> I am! My kids are still SLEEPING!!! LOL!

> Desi

[Guest guest]

Hi, Jayne. has tics and has some of what you describe. But since it's so

major you probably should follow up with neuro. I know how exhausting multiple

medical appts are; has so many, too. And here I am starting a fulltime job

tomorrow! I also wanted to tell you that had a scope (upper endoscopy) last

week, and the anesthesia was very mild, just by mask, and did fine. He

often has trouble with anesthesia, so I thought I'd mention it. We did find some

stuff in it that I think will be helpful. My husband and I even got to watch the

whole thing! I sure pray that you get to the bottom of all that has had

to deal with.

Beth

Re: vocal noises and jerky movements

Hey Holly and all,

As I re-read my post, I thought it sounded like seizures too. I don't think it

is though, it's like he's just really out of it, lost in his own world. Hard to

put to words, need to get a video of it and post it so you can SEE what I'm

describing.

We had a stay in children's hospital in March and he had an EEG and an MRI

then - but I dropped the ball once we ruled out all the really scary stuff like

Moyamoya, stroke, TIA's, - wanted to get through 's b-day, coming

home, school ending. Now I need to pick the ball back up and follow up with

Neurology. GI wants to scope him and I am terrified to put him under again as he

had a horrible time coming out of his anesthesia this last time after the MRI, I

really thought he had a stroke, it was the scariest thing I've ever been

through, the most helpless feeling a mom could have - not being able to fix it.

Ugh,it makes my stomach hurt just thinking about it. I know I have to do it - I

need to get to the bottom of all his medical stuff. It just sucks sometimes

clearly as we all battle these awful medical issues with our kids.

Of course this rain we are back at again today isn't helping..................

I shall capture the situation on video and post it for you all to decipher!

LOL!

Thanks guys,

Jayne

>

> Jayne, this sounds like a seizure. Also, risperdal has the side affect of

ticks. Isn't on that med as well?

> Holly

[Guest guest]

Just my own experience with hiccups....I have a hiatal hernia with awful chronic

reflux and find hiccups to be very painful at times. It is almost as if each one

causes a little volcano of acid to come up. Does have a history of

reflux? Asher has had reflux since birth and gets agitated when he has hiccups

too.

>

> Ever look at your child and wonder, is it Tourette's? What is it?

>

> has been so jerky for a while now, odd noises coming out of his mouth,

jerky movements all over the place, waking up in the middle of the night. He's

10, entering puberty, getting thick in the middle and thighs, and now...now it

is summer - big 'ol change in routine time - yeah me.

>

> Recently had a night that broke my heart. I was trying to tuck him

into bed and his body just wouldn't stop - it was jerking everywhere, his head

moving back and forth, his face contorting in odd expressions, lots of noises

coming out of his mouth and during all of this he's yawning. Clearly so tired

but his body wouldn't stop, his brain wouldn't stop. He thrashed for so long.

I couldn't reach him, he was gone - oblivious to anything I did. When it

finally ended, he was asleep in the blink of an eye. It was like his brain and

body finally shut down and he passed out. Snoring within seconds. So odd.

>

> I am trying to catch it on video so I can take it to the doctor with me.

Anyone else go through this?

>

>

> Also, does anyone else's child HATE having the hiccups as much as mine? I

think they hurt him, he looks like he's in so much pain, clutches his chest,

says ow, and gets mad.

>

> So much to take care of with his health..........more on that later.

>

> Jayne

>