Re: Seizure Meds

[Guest guest]

Greetings,

What are they attributing her Kidney and liver problem to?

With Much Respect,

Marlena Orndorff

> Thanks to all of you who responded to my email regarding seizure

meds

> and their side effects. In reply to some of those emails, I want

to

> clarify the following:

>

> 1) My husband and I want our daughter off Phenobarbital even though

> it is the oldest seizure med used because it is impairing her

> breathing thus causing her to have sleep apnea. In addition it is

> slowing down her cognitive skills.

>

> 2) We talked to the neurologist about the Ketogenic diet. However,

> since my daughter has a kidney and liver problem it was decided

> that this diet may be too harsh for her at this time. Her kidney

> doc mentioned that the start of this diet will have to cause her

> boldy to go into acidosis thus altering all her blood chemistry.

> We have been working hard for five years to get her more balanced

> and are afraid to change that at this time.

>

> 3) She does not have the seizures daily. However due to a problem in

> her broca area that showed on the SPECT scan, the neuro feels

> that she must be put on some seizure med as a preventative since

> any brain problem will likely cause seizures and if she is not

> on any meds then the seizure may be more intense when it happens.

> We do carry diastat all the time for seizures so I am not sure

> why that will not be enough to control a seizure.

>

> 4) My daughter has skin eckzema and is highly allergic to all foods

> and the environment (she is on a medical formula fed through a

> G tube). For that reason we are afraid to try the Lamictal even

> though it is supposed to be the best incase she develops the rash

> that the neuro talked about and that I read on the internet.

>

> Would appreciate any additional comments.

>

> Thanks..

>

> Najwa Hirn

> (mom to andra Hirn - 26 weeks - 12 oz. at birth - currently 5)

[Guest guest]

---

I have a son that is now 9yrs old. Huge yeast issue and takes

Depakote. We thought the seizures were improving but still were

noticed. This week the Neurologist up'd his amt to 375mg 2x per day up

from 250mg 2x per day. The seizures are now increasing. Weight was

already an issue. I have a hypothesis that if the yeast is worked on

these other issues will resolve too. any ideas out there! We NOW

have period of 20-30 min where he has so many absence seizures that we

aren't sure if he comes out of them or not. I'm terrified. These are

professionals! I am no longer willing to do this to him. I am going

back to the 250mg regimen. It was improving. The main issue we have is

at school and his reading comprehension problems. Otherwise he is a

pretty good student. I suspect OCD with books and numbers. Its strange

the obsession with books and numbers. I wonder sometimes, " Is Einstein

in there? " . Any thoughts on the yeast/seizures would be great. Dana

is there a connection? Doesn't yeast effect cognitive functions? Help

me.

In , " Robyn " <rngcoggs@...> wrote:

>

> My son had been on Depakote since June and we've noticed a huge

weight

> gain - about 8 pounds. He was also on OraPred in June as well, which

> I'm sure accounts for some of the weight gain.

>

> I'm taking him to our regular doc for advice, but thought I'd ask if

> anyone out there has their ASD kid on seizure meds and what worked

> well. My son has absence seizures. We've already tried Zarontin but

he

> couldn't tolerate the red dye.

>

> TIA,

>

> Robyn

>

[Guest guest]

I am new to this group and just beginning enzyme therapy with our 5 yr

old son, who also has Epilepsy. He has been diagnosed not quite a year

and has had tonic clonic (grand mal), absence, and drop seizures-- too

numerous to count. Medications number six and seven were what finally

did it for our son, a combination of Zonegran and Clonazepam. He is

currently on 300 mg 1x daily (PM) of Zonegran and .75 mg of Clonazepam

(.25 mg AM and .50 mg PM). Zonegran is not indicated for absence

seizures, however, Clonazepam is. April, are you still doing a drug

trial with the Depakote? If so, it may be time to talk with your

neurologist about doing a drug trial with something else, you're already

tweaking the new dosage because of big problems. Hope this helps.

-

> >

> > My son had been on Depakote since June and we've noticed a huge

> weight

> > gain - about 8 pounds. He was also on OraPred in June as well, which

> > I'm sure accounts for some of the weight gain.

> >

> > I'm taking him to our regular doc for advice, but thought I'd ask if

> > anyone out there has their ASD kid on seizure meds and what worked

> > well. My son has absence seizures. We've already tried Zarontin but

> he

> > couldn't tolerate the red dye.

> >

> > TIA,

> >

> > Robyn

> >

>

[Guest guest]

I am new to the group and have recently started my 5 yr old, who also

has epilepsy, on enzyme therapy. He has been diagnosed not quite a year

and has had tonic clonic (grand mal), absence, and drop seizures -- too

numerous to count. Medications number six and seven were what finally

stopped all seizures, Zonegran and Clonazepam. He is currently taking

300 mg 1x daily (PM) of Zonegran and .75 mg of Clonazepam (.25 mg AM,

..50 mg PM). Zonegran is not indicated for absence seizures, however,

clonazepam is. April, are you still doing a drug trial with the

Depakote? If so, you may want to talk with your neurologist about doing

a drug trial with something else, you're already tweaking your dosage

due to big problems.

> >

> > My son had been on Depakote since June and we've noticed a huge

> weight

> > gain - about 8 pounds. He was also on OraPred in June as well, which

> > I'm sure accounts for some of the weight gain.

> >

> > I'm taking him to our regular doc for advice, but thought I'd ask if

> > anyone out there has their ASD kid on seizure meds and what worked

> > well. My son has absence seizures. We've already tried Zarontin but

> he

> > couldn't tolerate the red dye.

> >

> > TIA,

> >

> > Robyn

> >

>

[Guest guest]

Seizures are common in these kids. Klinghardt and others say to treat

seizures, use

IMPORTANT: When using this Vitamin B6 approach, you must also use:

ï² Magnesium Citrate: 400mg/day or at least 25% of the B6mg, or

10mg/kg of body weight.

ï² Zinc: Low dose supplementation.

ï² PLEASE READ: Vitamin B6 overdoses is rare. Symptoms include:

shaking of hands as if to gain circulation, difficulty picking up

objects, difficulty walking due to numbness of bottom of feet.

This is from this website.

_http://www.collegepharmacy.com/AMTrx/Images/Klinghardt%20Protocol.pdf_

(http://www.collegepharmacy.com/AMTrx/Images/Klinghardt%20Protocol.pdf)

Basically pros in this area say seizures are from pathogens and toxins.

Which ones may vary from person to person. Most autistics appear to have

yeast,

viruses and bacteria as well as mercury and other toxins.

Getting them well is multi-approach thing. Starting off with digestive

enzymes, vitamins and minerals is good. Then add other things to fight

pathogens

and toxins.

Heidi N

************************************** See what's new at http://www.aol.com

[Guest guest]

Or, you can buy a round-trip ticket to Paris, have a nice vacation, pay out of

pocket full price for six months worth of meds (yes the same brand name that you

are now using) and still come out ahead ( they would be free if you were part of

France's universal healthcare) Of course, your american prescription probably

won't work so you could go to the world's leading authority on childhood

epilepsy (this was confirmed to me by 3 different american neurologists) and

again since you don't have French insurance you'll pay around $120.00 (because

he's a specialist) or you can pay $30 to a regular physician.

What is it that people don't get about universal healthcare?!? Why do americans

agree to these outlandishly and unnecessarily expensive meds that our kids need

(ie. not a luxury)

Ok, to be fair, why don't the french get the IDEA of individual education plans

but this is one of my pet peeves.

Thais

[Guest guest]

There is a program called Partnership for Prescription Assistance where

patients can find programs to help pay for many medications if they qualify.

Here is a link to their website: _http://www.pparx.org/_

(http://www.pparx.org/)