Re: Abnormal EEG with spikes?? Anyone??

[Guest guest]

Hello Kristie! My son has been a patient of Dr. Goldberg's for 10 years and he

is now 19! We have had him on zoloft for a few years now and he has also taken

various anti fungals and is now on acyclovir(anti viral). He had his first

epileptic seizure in February, 2005. We took him to a neurologist who ordered an

EEG, CAT scan, and MRI. The tests showed no brain damage(thank God), but he has

the type of seizures that affect the entire brain. He was put on Lamictal last

year, but recently his teacher told us that each time the med was increased he

became violent, uncooperative, and more compulsive. The neurologist has just

switched him to another seizure medication called Keppra. So far he has been

back to his old mild mannered self on this one. He needs the medication in

order to protect him from further seizures, but we need to make sure his

behavior is not negatively affected. There are many seizure meds and the

neurologist needs to monitor all the side affects. We have had a very rough

road and are hoping for the best on this new med. Hope this helps you!

Gayle

Abnormal EEG with spikes?? Anyone??

Hi there. My son was diagnosed with autism in December of 2005. He is

age 2.9. We had an eeg done in June of 2005 and then in February of

2006. Both have shown some spikes in several regions of the brain, and

slowing mild to moderate on the right. Our ped neurologist isn't

pushing for anti convulsants but has suggested this. I was just

wondering if anyone has been in my situation and if you opted to go

the route of SSRI's anti virals and anti fungals rather than anti

convulsants. Any guidance is much appreciated on or off list.

Thanks!

Kristie

mommy to Aidan 2.9

Responsibility for the content of this message lies strictly with

the original author(s), and is not necessarily endorsed by or the

opinion of the Research Institute and/or the Parent Coalition.

[Guest guest]

Kristie,

We have gone the route of anticonvulsants due to the fact that one of my

boys has a horrific seizure disorder (but thanks to several great

doctors, he has been seizure-free since August). We started him with Dr.

Goldberg after realizing that he had like his brother (after the

seizures started). We hope that the combination of anticonvulsants and

meds will help him get healthy enough to get off of the anticonvulsants in a

couple of years.

Using anticonvulsants is a huge decision... in my child, some

anticonvulsants seemed to trigger new kinds of seizures. His is not the

first case I have heard of where this appeared to happen. If I had a child

who was not having outright seizures I would be very hesitant to try

anticonvulsants . Some of the anticonvulsants have intense cognitive

effects, as well.

We were told at the " big " childrens hospital in Indiana that my son's EEG

presented as the pattern for Lennox-Gastaut Epilepsy, which is a form where

the child continually deteriorates mentally.

At one point my son had lost his ability to speak and walk. His speech

began to come back VERY slowly (I was told by the speech therapist that he

presented like a stroke victim). Then we started him on Valtrex. In the

week following starting Valtrex, he made a HUGE leap in progress... it was

amazing.

Now, my son's seizures are under control one one seizure med, he has

improved to the point where he started regular kindergarten this year and is

the best reader in his class. He is catching up on everything.

If I were in your situation, knowing what I do now, I would try to get going

on the SSRI's, anti virals and anti fungals and then have that Dr. help me

figure out what to do about the anticonvulsants.

The anticonvulsants are treating a symptom, the treatments are treating

the underlying cause.

There is a great website called epilepsy.com that has up-to-date info on

seizure medications. It is an excellent resource. You might ask the

neurologist what meds he is considering, then research them on your own for

a while.

Roughly 1/4 of kids with autism diagnoses have seizures.

I guess one question I would have for the neurologist if to ask what the

odds are of the EEG spikes progressing into full fledged seizures. He may

not be able to answer that, but it's worth asking.

I've gone on long enough now! Good luck to you. It's so hard trying to

figure out what to do. One of my greatest reliefs in starting with Dr.

Goldberg was that I felt he knew what to do as well as than anyone could and

it took a lot of the pressure off of me.

Caroline

> From: aaron2kristie <aaron2kristie@...>

> Reply-< >

> Date: Thu, 16 Mar 2006 09:48:13 +0000

> < >

> Subject: Abnormal EEG with spikes?? Anyone??

>

> Hi there. My son was diagnosed with autism in December of 2005. He is

> age 2.9. We had an eeg done in June of 2005 and then in February of

> 2006. Both have shown some spikes in several regions of the brain, and

> slowing mild to moderate on the right. Our ped neurologist isn't

> pushing for anti convulsants but has suggested this. I was just

> wondering if anyone has been in my situation and if you opted to go

> the route of SSRI's anti virals and anti fungals rather than anti

> convulsants. Any guidance is much appreciated on or off list.

>

> Thanks!

> Kristie

> mommy to Aidan 2.9

[Guest guest]

I agree with Caroline. My son began having seizures around 6yo and confirmed on

EEG " abnormal spike wave " activity in temporal areas. Depakote was a God-send

at the time, but knowing what I know now, I would start with Dr. G immediately

and get your son on an anti-viral. We have been with Dr. G for 5 years. It

took 2 years of an anti-viral to be able to wean my son off depakote (which was

a band-aid until we got his HHV6 titer down)

My son is 15. Oh what I would give to have known about Dr. G when my son was

3yo. I read some things he wrote, but was just sure that I could get local Docs

to do what he was doing. WRONG! I wasted sooo much time and energy doing that.

There is so much hope for your son since he is so young. We didn't get to Dr. G

until my son was 10, but he is a healthier child, no longer on seizure medicine

and making steady progress.

Best of luck to you,

Ellie

Abnormal EEG with spikes?? Anyone??

>

> Hi there. My son was diagnosed with autism in December of 2005. He is

> age 2.9. We had an eeg done in June of 2005 and then in February of

> 2006. Both have shown some spikes in several regions of the brain, and

> slowing mild to moderate on the right. Our ped neurologist isn't

> pushing for anti convulsants but has suggested this. I was just

> wondering if anyone has been in my situation and if you opted to go

> the route of SSRI's anti virals and anti fungals rather than anti

> convulsants. Any guidance is much appreciated on or off list.

>

> Thanks!

> Kristie

> mommy to Aidan 2.9

Responsibility for the content of this message lies strictly with

the original author(s), and is not necessarily endorsed by or the

opinion of the Research Institute and/or the Parent Coalition.

[Guest guest]

Kristie-

suggestion: is your son showing any signs of needing the anticonvulsants?

you might seriously look at using the SSRI's and others> after using them

then ask for a repeat EEG to see if that had made a difference in using the

medications; realize though it will take a month or so to even out on the

medications and that would include the anticonvulsants.

Good luck; let me know how things go and what you decide.

Bekki

aaron2kristie <aaron2kristie@...> wrote:

Hi there. My son was diagnosed with autism in December of 2005. He is

age 2.9. We had an eeg done in June of 2005 and then in February of

2006. Both have shown some spikes in several regions of the brain, and

slowing mild to moderate on the right. Our ped neurologist isn't

pushing for anti convulsants but has suggested this. I was just

wondering if anyone has been in my situation and if you opted to go

the route of SSRI's anti virals and anti fungals rather than anti

convulsants. Any guidance is much appreciated on or off list.

Thanks!

Kristie

mommy to Aidan 2.9

Responsibility for the content of this message lies strictly with

the original author(s), and is not necessarily endorsed by or the

opinion of the Research Institute and/or the Parent Coalition.

[Guest guest]

You have all given wonderful advice. However I failed to mention that

my son's main area of concern are: lack of language, lack of gestures,

receptive language is low (he does babble though), and also imitation

is low.

Just wanted you to be aware of that. I just got the paperwork for Dr

Goldberg today and I will be putting the packet together to submit

back to the office.

Kristie

mommy to Aidan 2.9

[Guest guest]

" The anticonvulsants are treating a symptom, the treatments are

treating the underlying cause. "

I don't understand what that means and have never heard this before.

Can someone elaborate? We go for a follow up with our ped neurologist

this Thursday and I would like to be clear on how we should proceed.

Our ped neurologist is out of UCLA (Dr Spence) and she will be leaving

soon to go work for the CDC. I currently am gathering documents to

send in in order to see Dr Goldberg.

Thank you all. You have been very helpful and I am just trying to be

clear on what is in the best interest of my son.

Kristie

mommy to Aidan 2.9

[Guest guest]

Dr Mena may explain this in the article he wrote with Drs Goldberg

and .

Seizures are happening for a reason - I believe spect scans have

shown scalloping / thinning of the myelin in the brain.

This scalloping / thinning is occuring for a reason.

Anticonvulsants bandaid the cause.

Much like dietary supplements - they are filling

a void, not treating the underlying cause

doris

land

>

> " The anticonvulsants are treating a symptom, the treatments are

> treating the underlying cause. "

>

> I don't understand what that means and have never heard this before.

> Can someone elaborate? We go for a follow up with our ped neurologist

> this Thursday and I would like to be clear on how we should proceed.

> Our ped neurologist is out of UCLA (Dr Spence) and she will be leaving

> soon to go work for the CDC. I currently am gathering documents to

> send in in order to see Dr Goldberg.

>

> Thank you all. You have been very helpful and I am just trying to be

> clear on what is in the best interest of my son.

>

> Kristie

> mommy to Aidan 2.9

>

[Guest guest]

In the case of , the immune system can be

responsible for seizures, and especially chronic

underlying viruses, especially some of the

herpes-class viruses that 'love' the central nervous

system. While there can be other causes for seizures,

and these need to be ruled out, seizures associated

with " ASD " are more often going to be

neuroinflammation or viral in nature.

There are reports and case studies that have been

posted here in the past of children with intractable

seizures (not responding to treatment) resolving or at

least significantly improving after the introduction

of antivirals. Also, even special diets have had a

great deal of success with some types of seizures.

I don't know if your child's abnormal EEG with spikes

are necessarily seizures, but still is likely related

to . Of course, I cannot give medical advice or

diagnose it, but we've heard Dr G's response to this

on a few occasions and that should be the general gist

of what he said - I hope!

HTH-

--- aaron2kristie <aaron2kristie@...> wrote:

> " The anticonvulsants are treating a symptom, the

> treatments are

> treating the underlying cause. "

>

> I don't understand what that means and have never

> heard this before.

> Can someone elaborate? We go for a follow up with

> our ped neurologist

> this Thursday and I would like to be clear on how we

> should proceed.

> Our ped neurologist is out of UCLA (Dr Spence) and

> she will be leaving

> soon to go work for the CDC. I currently am

> gathering documents to

> send in in order to see Dr Goldberg.

>

> Thank you all. You have been very helpful and I am

> just trying to be

> clear on what is in the best interest of my son.

>

> Kristie

> mommy to Aidan 2.9

>

>

>

>

>

__________________________________________________

[Guest guest]

Kristie,

> " The anticonvulsants are treating a symptom, the treatments are

> treating the underlying cause. "

I think maybe I said that. Let me elaborate.

I have a little guy with a seizure disorder as well as . It is known

that kids with have dysfunctional immune systems. It is also known

that some people with epilepsy have dysfunctional immune systems. It is

unknown how or why some anticonvulsants even work. In my own humble

words... the general idea of anticonvulsant use is to stop the seizures for

long enough (average rule of thumb is two years) that the patient can be

weaned off of the meds and hope for no more seizures. It works some of the

time. Seizure control is sort of a hit-or-miss thing. You try one drug and

if it doesn't work you try another... and another. The closest most

neurologists come to finding a cause for the seizures is doing an EEG. That

may tell them where the seizures start and how they spread but it does not

tell them why the seizures are happening (unless they see some sort of brain

damage or abnormality on an MRI).

Dr. Goldberg is looking at children's immune systems and trying to reduce

the stress on them and get them working more normally. This is the course

we have taken with our little guy (as well as using anticonvulsants). He

has ended up defying the predictions of the neurologists at the big

pediatric hospital (they said he would just continue to deteriorate...

instead he has made continuous improvement), and I thank Dr. G for that.

There's a book I just located on the net that would probably be a great

read... the bad news is that it costs $149.50. It's called " Recent Advances

in Epilepsy Research " . Here's the link to the bibliography page...

http://www.eurekah.com/isbn.php?isbn=0-306-47860-9 & bookid=102 & catid=77 & PHPSE

SSID=6720e3a6053d7c15f5f3e5dfebe68721

The good news is that the bibliography page lists the chapters and a

bibliography of the clinical studies, etc., that support the material in the

book (one problem... you won't know which studies go with which chapter of

the book).

There is a chapter that I would love to get my hands on called " Using the

Immune System to Target Epilepsy " by Deborah Young and J. During.

Using the book's bibliography link you can read the names of the clinical

studies and then just pull them up on Google and read them... here are a

couple and their links...

" Role of the GABA transporter in epilepsy. "

http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve & db=PubMed & list_ui

ds=15250587 & dopt=Abstract

" Inflammation and Epilepsy "

http://www.pubmedcentral.nih.gov/articlerender.fcgi?artid=1176317

" Functional Role of Proinflammatory and Anti-Inflammatory Cytokines in

Seizures "

http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve & db=PubMed & list_ui

ds=15250591 & dopt=Abstract

Anyway, my point is that there is research going on in the area of immune

dysfunction and seizures.

One more interesting tidbit... there is a study that examined the idea of a

VACCINE against seizures. I don't know if it was published in a reputable

journal or really anything more about it, but it actually seemed to work in

rats... I don't know what I think of that idea because I don't understand

the immune system well enough, but anyway I posted the abstract below so you

could see it.

An Oral Vaccine Against NMDAR1 with Efficacy in Experimental Stroke and

Epilepsy

J. During, 13* W. Symes, 1 A. Lawlor, 1 Lin, 2

Jane Dunning, 1 Helen L. Fitzsimons, 1 Poulsen, 3 Paola Leone, 3 Ruian

Xu, 1 Bridget L. Dicker, 1 Janusz Lipski, 2 Deborah Young 1

The brain is generally considered immunoprivileged, although increasing

examples of immunological responses to brain antigens, neuronal expression

of major histocompatibility class I genes, and neurological autoimmunity

have been recognized. An adeno-associated virus (AAV) vaccine generated

autoantibodies that targeted a specific brain protein, the NR1 subunit of

the N-methyl-D-aspartate (NMDA) receptor. After peroral administration of

the AAV vaccine, transgene expression persisted for at least 5 months and

was associated with a robust humoral response in the absence of a

significant cell-mediated response. This single-dose vaccine was associated

with strong anti-epileptic and neuroprotective activity in rats for both a

kainate-induced seizure model and also a middle cerebral artery occlusion

stroke model at 1 to 5 months following vaccination. Thus, a vaccination

strategy targeting brain proteins is feasible and may have therapeutic

potential for neurological disorders.

1 Department of Molecular Medicine and

2 Department of Physiology, University of Auckland School of Medicine,

Auckland, New Zealand.

3 Department of Neurosurgery, Jefferson Medical College and Jefferson

University, Philadelphia, PA 19107, USA.

Here's the link to the above article...

http://www.sciencemag.org/cgi/content/abstract/287/5457/1453

I'm beginning to ramble, so I'll stop here. I hope what I said made some

sense.

Caroline

> From: aaron2kristie <aaron2kristie@...>

> Reply-< >

> Date: Wed, 05 Apr 2006 03:14:06 +0000

> < >

> Subject: Re: Abnormal EEG with spikes?? Anyone??

>

> " The anticonvulsants are treating a symptom, the treatments are

> treating the underlying cause. "

>

> I don't understand what that means and have never heard this before.

> Can someone elaborate? We go for a follow up with our ped neurologist

> this Thursday and I would like to be clear on how we should proceed.

> Our ped neurologist is out of UCLA (Dr Spence) and she will be leaving

> soon to go work for the CDC. I currently am gathering documents to

> send in in order to see Dr Goldberg.

>

> Thank you all. You have been very helpful and I am just trying to be

> clear on what is in the best interest of my son.

>

> Kristie

> mommy to Aidan 2.9