Re: Valtrex question/seizure question

October 17, 2008

Hey ,

Sounds like you're having a die-off-two weeks is the right time for that.

That's why you start out at the lower dose & then bump it up - to lessen the

severity of the symptoms. Giving tylenol or ibuprofen (some are concerned about

tylenol - I've used it w/benefits but my kids don't usually have die-off) will

help some.

Many kids with intractible seizures have been able to stop their meds a year or

more into the protocol. I don't know if very many don't experience a dramatic

improvement in seizures, if not a complete resolution. I think I've only heard

of one child who continued to have seizures past a couple of years... but they

were on much lower doses of antiseizure meds than before, so there was still

improvement.

A lot of times, die-off is a pretty good sign that the meds are hitting a

virus. You don't have to have die off to have benefit.

Are you washing off the blue dye on the pill? That will whack some kids out.

I'd also rule out any new diet additions, and cut back on the sugar.

HTH-

Valtrex question/seizure question

My duaghter is on her second week of Valrex and I have a few concerns

and I'm wondering if her reaction is typical. She is VERY loopy,

uncordinated, she is very sensory seeking, and she keeps moving her

head from side to side. Overall she looks more autistic. It's a little

scary and now she need to increase the valrex. Did your kids have the

same problem?

She also has absence seizures and I was wondering if your kids have

had improvement and what medication that Dr. G uses other than the

seizure meds that helped. I hate having my daughter on seizure

medication and would love for her to go off of them. It's been a hard

week

Thanks,

__________________________________________________

October 18, 2008

Hi, .

I agree with . It's probably die off. I have three kids on the protocol

and my middle son is the one who experiences the die off symptoms. He is the

most severely affected of the three. In addition to what you described, he's an

emotional wreck and temperamental during this time as well.

Regarding the seizures, we'd successfully weaned Noah off of seizure meds for

absence seizures about 6 months into the protocol. Then his HHV6 levels went up

and he had more a grand mal type seizure, which scared the heck out of us. Dr. G

put him back on Zarontin until his HHV6 levels lower and then we'll try again.

With , my oldest, we've successfully lowered his daily dose of Zarontin

but not completely eliminated it. Dr. G is supportive of getting our kids off

seizure meds, but only when it's safe to do so. The seizure meds dampen all

electrical activity in the brain--not just the abnormal electrical activity, so

it's definitely beneficial to have them off when safe to do so. I am nearly

positive the increase in HHV6 triggered Noah's seizure. He'd been completely off

the seizure med for 6 weeks and had shown no signs of seizure activity.

It will take time, but hopefully your daughter can be free of seizure meds and

seizures soon.

Take care,

Robyn

From: <thecolemans4@...>

Subject: Re: Valtrex question/seizure question

Date: Friday, October 17, 2008, 7:05 PM