Andy: Re: Lack of progress,

[Guest guest]

> 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

[Guest guest]

I felt the same way (panicked) about using natural thyroid hormone on a 4 year

old, not anywhere near where I wanted to go. But I started piecing together the

parts of my dd's life that were affected by low thyroid hormone and it was not

pretty.

She became successful and learned to overcome her learning disabilities caused

by the deficit with lots of remedial help along the way but she worked harder

than any 4 people I ever saw and it was painful to watch. Sometimes the risk of

doing nothing is worse than the risk of doing something to prevent further

damage.

I did as much research as I could and found a dr to work with and we still ended

up doing it wrong, and I beat myself up pretty severely, but we eventually got

it right and the results have been very good. I am soooo comfortable when I work

with someone else's kid, can calmly assess the situation and have all kinds of

confidence and the results are more often than not good. I often reflect on the

contrast in me when working with our kid. I can so empathize with the panic, it

only takes one bad decision on my part for it to show it's ugly face again,

still fight it daily.

[ ] 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

[Guest guest]

it's never the same when it's your own child. I remember a conversation

with a dear friend who is a ped neurologist, and we often laughed about our own

ADHD children. My oldest was surely the poster child! and here his mom's

specialty is ADHD.

That's the reason most docs/therapists don't treat their own children.....

the windshield is just too cloudy to see it clearly!

Amy

Cochran <Ladyshrink111@...> wrote:

I felt the same way (panicked) about using natural thyroid hormone on

a 4 year old, not anywhere near where I wanted to go. But I started piecing

together the parts of my dd's life that were affected by low thyroid hormone and

it was not pretty.

She became successful and learned to overcome her learning disabilities caused

by the deficit with lots of remedial help along the way but she worked harder

than any 4 people I ever saw and it was painful to watch. Sometimes the risk of

doing nothing is worse than the risk of doing something to prevent further

damage.

I did as much research as I could and found a dr to work with and we still ended

up doing it wrong, and I beat myself up pretty severely, but we eventually got

it right and the results have been very good. I am soooo comfortable when I work

with someone else's kid, can calmly assess the situation and have all kinds of

confidence and the results are more often than not good. I often reflect on the

contrast in me when working with our kid. I can so empathize with the panic, it

only takes one bad decision on my part for it to show it's ugly face again,

still fight it daily.

[ ] 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

[Guest guest]

Thanks, Amy, same here, did my internship in a pediatric outpatient clinice and

spent my first five years in practice seeing " just kids " . I find it helpful to

pretend she is someone else's kid, hard, but works and is the only way sometimes

I can get through this. Maybe we could trade kids as I'm great with anyone

else's :-) Truth be told I do okay with her also but the process is a killer!

[ ] 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