Re: Andy/absence seizures?during chelation: Re: Lack of progress,

[Guest guest]

I have seen ours intermittently, just during " just " Ala rounds do this brief

staring. Saw it yesterday in a restaurant staring at a light on our table at a

dark restaurant. There are no automations that I have heard about during absence

seizures. When you get eye contact with her or call her name she will respond

immediately, is this anything to be concerned aka panic about?

She did have 3 vagus vasal reactions to severe pain and 1 pass out episode after

a long hot shower over a year ago, no reoccurrence of either for almost a year

now despite pain or long periods of time in a hot tub/steam shower.

[ ] Andy: Re: Lack of progress,

> The idea of using anti-seizure meds scares me enormously.

Then you need counseling so you can care for your child responsibly.

FEAR leads to bad decisions.

Concern leads to good decisions.

I have found fear, especially if combined with anxiety, to be devastating in

terms of the

chances of people to get better in casese I consult on. It leads to paralysis,

until pressure

builds and panic sets in, at which time random decisions are made, damage

happens and

increases the level of fear up to where paralysis recurs.

If they work they will be wonderfully helpful, if they don't work you can stop

them, and

they are not as dangerous as, say, chelating agents.

> I know being scared doesn't help anything, but nonetheless.

Correct. Calm down. Turn it into concern.

> I have found a new doctor who will likely be amenable to ordering

> pretty much anything I want. Should I push for a 24 hour EEG (the

> standard here will be 20 minutes). If a 24 hour EEG shows completely

> normal would you still recommend the anti-seizure meds? I suspect it

> will be difficult to get these meds if the EEG shows nothing.

Actually most antiseizure meds are prescribed without EEG evidence of

seizures. They can

be used for mood staiblization or for " behavior control " in impaired children,

and even

epileptics often have clean eeg's when they check.

The issue with the EEG is if you catch something you know a lot more about

what meds to

try than if you don't.

> Can seizures be virus related or would the timing of my son's visible

> seizures (during antiviral measures) be simply coincidental?

Hard to tell.

If he had " visible seizures " and they have recurred, the doc would actually be

remiss NOT

to prescribe.

This statement in the original post

> > > We have seen great progress. But, sadly, we have lost almost all

> > > of the gains we've made.

is consistent with the effects of ongoing undiagnosed seizures. This is why I

think you

need to talk to his doctor promptly about a trial of antiseizure medications

and an EEG.

24 hour best, 20 minute one actually of some value if you get the written

neurology report

on it rather than just let your doctor say it is " fine " if he sees it says " no

seizure activity

was observed. "

>The

> visible seizures have stopped each time I've discontinued the

> antiviral measures.

You describe these as ABSENCE seizures. Read up on those on the web, talk to

the doctor

about it, make sure you have a clear picture of what an absence seizure is.

There are different kinds of medications for the different seizures, and part

of what the

EEG is for is to make sure you know exactly what kind it is.

For absence the usual choices are (trendy new expensive) Lamictal, Depakote

(valporoic

acid, divalproex) which has been around for a long time, and the very old but

really good

for absence drug Zarontin (ethosuximide). Klonopin can also be used but it is

more

appropriate if there is anxiety or panic attacks along with the seizures. It

is very seldom

used as sole therapy.

Carbamazepine, oxazepine and I think one or two others make absence worse,

many

others like phenobarbital or primidone don't do anything for it.

There are very few nutritional interventions that are helpful, this is an area

where I

strongly suggest people do try the Rx drugs and do so first.

I have had several cases where absence seizures were ignored (often by doctors

who

should have known better!) for years with profoundly negative results for the

child.

It has been known since ancient greek times that seizures beget seizures. The

longer

someone has them the harder it is to control them and the less likely the

seizures are to

go away. Thus it really is a good idea to talk to the doctor about a trial of

medication, an

EEG, and make sure that the problem is clearly identified and well controlled.

Remember, if you have fear over this you are likely to avoid it until it is

overwhelming and

then desparately do something that may not be a good idea. Calm down, see the

doctor,

find out what the choices are. Until you actually put the pills in his mouth

there is no risk

and nothing to be afraid of.

Andy