RE: Anyone tried CLONIDINE on their child-VERY DESPERATE SITUATION

[Guest guest]

Is he sleeping on antimony-containing bedding? Does he have a new mattress or

other new bedding? Does he have mercury amalgam dental fillings? Has he

recently had any new fillings or vaccines? What else in new in his environment?

Are there fluorescent lights in his room?

S

--- On Sat 11/20, Greenspan < vic2171@... > wrote

<tt>

Listmates,<BR>

<BR>

My son (7, autistic, non-verbal) has been having horrible violents fits for the

past 2 1/2 months or so. He always has them at night or soon after waking up and

sometimes during the day as well. At first we thought it was clostridia,and

treated with flagyl, vancomycin and many probiotics and naturals-the condition

did not improve. We did a 24-hour EEG which showed no seizure activity. <BR>

<BR>

He was scoped by Dr. Krigsman several weeks ago and while the colonoscopy and

endoscopy showed inflammation in his stomach and large intestine, the medicines

that Dr. Krigsman prescribed do not seem to help at all. <BR>

<BR>

We were doing neurofeedback with a very well-regarded practitioner since late

June and I am very concerned that something in the neurofeedback triggered these

episodes. This is very unlike him. We stopped neurofeedback 2 weeks ago-I'm too

scared to go back and keep doing it. <BR>

<BR>

The way the episodes start is that he just drops to the fllor and starts hitting

himself, banging his head, and sometimes tries to go after us when we try to

restrain him. He also screams at the top of his lungs. We try to swaddle him in

a blanket to prevent him from hurting himself. My dad (his grandfather) is

covered in black and blue marks from these episodes. <BR>

<BR>

His neurologist suggested trying clonidine. He said that it has helped some kids

with these types of behaviors. I know some people use it to help their kids

sleep better at night.  Has anyone used it for these kinds of behaviors? <BR>

<BR>

Needless to say, we are very scared. We can't take him anywhere and I'm so

scared that it will never get better and as he gets bigger and these fits get

harder to control, he'll wind up in an institution-something that would probably

kill me. <BR>

<BR>

Has anyone seen anything like this before and can you suggest anything ? <BR>

<BR>

Thank you in advance,<BR>

<BR>

<BR>

<BR>

[Guest guest]

My son, age 3 takes clonidine because he did not fall asleep until 11 pm

only to wake by 1am with night terrors and tantrums that became dangerous

also.

I think the clonidine helped and I only gave 1/2 the dose the dr.

prescribed.

The clonidine has not completely 'cured' the problem but there are more

'good' nights than bad and at least he can sleep now. (and is easier to

console when he does wake up)

I did notice a huge difference when I started the feingold diet elliminating

the artificial colors, artificial flavors and artificial preservatives.

I used to give him things like fruit rollups/fruit gushers, if he has things

like that now, it seems that he gets worse.

I don't like giving him clonidine, esp at his age but the night terrors

affect us all.

The DAN! dr suggested a 'sleep profile' test but it is too hard for me to

get his saliva and urine when he is having a fit and that is the hours that

they need to test, but maybe you can try that, being that he is a little

older but I still don't know how you could if he is uncontrollable, but I

figured I'd tell you about it in case there is any way to do it.....I don't

really know what the benefits are, as far as what they're testing for but I

do have one last suggestion..

Inositol. It comes in a powder, possibly even a capsule and it has something

to do with the B's, not B12 or anything specific, sorry I am having a hard

time retaining the information overload lately.. But I used it for the past

2 nights and he has NOT had a night terror. He woke up, began to cry, more

like a little moaning, I let him know I was right there and he put his head

back down. Usually he doesn't even understand that it is ME and gets worse,

but he was fine. Maybe you can try that before the clonidine? or with it...

My heart goes out to you, I know exactly how sad it is to be so helpless in

those hours and mine is somewhat verbal even though he usually is not

comprehendable when he is having a fit but I can't imagine how hard it is

for you.

Carol

RE: [ ] Anyone tried CLONIDINE on their child-VERY

DESPERATE SITUATION

>

>

> Is he sleeping on antimony-containing bedding? Does he have a new

> mattress or other new bedding? Does he have mercury amalgam dental

> fillings? Has he recently had any new fillings or vaccines? What else in

> new in his environment? Are there fluorescent lights in his room?

> S

>

>

>

>

> --- On Sat 11/20, Greenspan < vic2171@... > wrote

> <tt>

> Listmates,<BR>

> <BR>

> My son (7, autistic, non-verbal) has been having horrible violents fits

> for the past 2 1/2 months or so. He always has them at night or soon after

> waking up and sometimes during the day as well. At first we thought it was

> clostridia,and treated with flagyl, vancomycin and many probiotics and

> naturals-the condition did not improve. We did a 24-hour EEG which showed

> no seizure activity. <BR>

> <BR>

> He was scoped by Dr. Krigsman several weeks ago and while the colonoscopy

> and endoscopy showed inflammation in his stomach and large intestine, the

> medicines that Dr. Krigsman prescribed do not seem to help at all. <BR>

> <BR>

> We were doing neurofeedback with a very well-regarded practitioner since

> late June and I am very concerned that something in the neurofeedback

> triggered these episodes. This is very unlike him. We stopped

> neurofeedback 2 weeks ago-I'm too scared to go back and keep doing it.

> <BR>

> <BR>

> The way the episodes start is that he just drops to the fllor and starts

> hitting himself, banging his head, and sometimes tries to go after us when

> we try to restrain him. He also screams at the top of his lungs. We try to

> swaddle him in a blanket to prevent him from hurting himself. My dad (his

> grandfather) is covered in black and blue marks from these episodes. <BR>

> <BR>

> His neurologist suggested trying clonidine. He said that it has helped

> some kids with these types of behaviors. I know some people use it to help

> their kids sleep better at night. Has anyone used it for these kinds of

> behaviors? <BR>

> <BR>

> Needless to say, we are very scared. We can't take him anywhere and I'm so

> scared that it will never get better and as he gets bigger and these fits

> get harder to control, he'll wind up in an institution-something that

> would probably kill me. <BR>

> <BR>

> Has anyone seen anything like this before and can you suggest anything ?

> <BR>

> <BR>

> Thank you in advance,<BR>

> <BR>

> <BR>

> <BR>

>

[Guest guest]

> > We did a 24-hour EEG which showed

> > no seizure activity. <

But was it NORMAL or spikey?

Not everything you can pick up on an eeg is a seizure.

Andy . . . . . .