Carnosine

[Guest guest]

Rosemary what do you do before I reply to this message so I know how to

explaine it ie what language (biochem or public style)

as the answer to you questions may get a bit technical

cheers Mark

>>> " Rosemary Wedderburn " <CookieMagic@...> 12/14 4:44 am >>>

Mark -- thanks for all the info on carnosine; very helpful and

insightful and very much appreciated. Since you mentioned it had

benefit as an antioxidant and that it might help in the gym, I got

interested until I read the bit about the displacement of taurine

and heart regulation. This doesn't sound particularly good. At

what levels might it possibly be useful in the gym and at what

levels does it become dangerous due to the things you mentioned?

LEF recommends a doses of 1 to 1.5 grams/day in order to overpower

the carsonase enzyme. Your thoughts on this, please? Also, do you

know anyone that has been using carnosine for any length of time in

large doses, and if so, what are they saying about it?

Rosemary

[Guest guest]

> Is Carnosine the same thing as L-Carnitine? I know someone on this

list is

> on Carnoisine(Is it a prescription?). I just looked in the archives

but only

> found one thing about and it did not answer these questions.

,

No, these substances are different from each other. L-carnitine is

the substance that serves as an " usher " to bring fatty acids into the

mitochondria so they can be burned as fuel. It is very helpful

together with coenzyme Q-10 for treating congestive heart failure,

because the heart muscle operates primarily on fatty acids. There

have been a couple of reports in the literature indicating that

PWCs are low in carnitine, one by a Japanese group, and one by

Plioplys et al, I think. Some PWCs find that L-carnitine is

beneficial, but some don't. In my hypothesis for CFS, I have

postulated partial blockades in the Krebs cycles. If this is actually

what is going on, then I wouldn't expect L-carnitine to be very

helpful in PWCs who match this hypothesis, because it requires a

complete Krebs cycle to burn fats, as Jerry pointed out to me

a while back. It wouldn't do much good to bring more fatty acids into

the mitochondria if the Krebs cycles aren't able to burn them very

rapidly. PWCs may be low in carnitine because they really can't

use it, since their Krebs cycles are blocked. I'd be interested to

hear whether L-carnitine has helped people on this list.

Carnosine is a substance whose function has only become understood

recently. It is now believed to repair proteins that have been

damaged by oxidizing free radicals. The Life Extension Foundation

sells it as a product now, and had a big article on it in their

magazine about a month ago. Their claim is that if you take it in

large enough amounts (the amounts in their pills) you can overwhelm

the enzyme carnosinase that normally breaks it down, and thus get it

into your cells where it can repair damage and counter the effects of

aging. If this is all true, it seems to me that it would probably be

helpful in CFS, because there is evidence of oxidative stress,

glutathione depletion, and damage to proteins and lipids in CFS. I'm

not financially connected with carnosine.

I think the similarity in the names came about because both these

substances are found to be abundant in muscle tissue, hence in meat.

Rich

[Guest guest]

Hey guys.

Does anyone have any first-hand experience re: NAET? We had Shelby tested

with BioSET, and I'm not comfortable with all of this. Particularly with

the doctor's book that her NAET protocol " cures " autism. Anyone else with

thoughts on it?

Missy

Carnosine

Just for your consideration.

Hi All:

While I've been busy preparing my half of the new DAN! Consensus Report

(2002

Edition), lots of Internet talk about the peptide carnosine has evidently

occurred. While I have no desire or intention to engage those who are

enamored with this latest magic bullet for autism, I do find it

appropriate

to point out some of the concerns and pitfalls of carnosine use in autism.

Carnosine is a dipeptide composed of the amino acids histidine and

beta-alanine. It seems that it gets dragged out of the closet every decade

for some use or other. In the 1970s it was muscular dystrophy. In the

diet,

it comes from incomplete digestive proteolysis of beef, pork, tuna and

salmon

- as you can see in the amino acid analyses on the urine of autistics and

other patients with maldigestion. Carnosine is elevated in the urine of 20

to

40% of autistics. In the 1980s, Bernie Rimland and I discussed this

finding

and considered it to be another facet of the maldigestion and peptide

excess

per the findings of Karl Reichelt, et al.

In body tissues, carnosine is split into histidine and beta-alanine.

Beta-alanine can be a real troublemaker, and I'll get to that shortly.

Histidine is the Dr. Jekyll and Mr. Hyde part. Histidine becomes FIGlu and

FIGlu pushes the formation of 5-formiminotetrahydrofolate. This is good,

even

though it often raises FIGlu levels in the urine and blood of autistics.

It's

good because: (a) it helps remove a potential folate trap, and ( it

leads

to two forms of folate that are required for purine and purine nucleotide

synthesis. One of these forms, 10-formyltetrahydrofolate, comes in just

after

the adenylosuccinase step and helps " pull " the process along at a

documented

sticking point for some forms of autism.

However, histidine and carnosine are powerful carriers of copper. They

transport copper from the intestinal milieu into the portal blood and from

there to organs and tissues in the body. And don't think you can displace

copper with zinc once the copper is on histidine - you cannot. The

equilibrium constant for copper II chelated to histidine is 18.3; for zinc

it

is 6.7 to 12.9, depending on chelate structure (Ref. Chaberek and Martell,

Organic Sequestering Agents, Wiley & Sons, p.549). Because these are

exponential relationships, the real difference in the constants is 10 to

the

5th up to 10 to the 11th. Only glutathione, cysteine and thionein can

intercept this carnosine-copper transport, but that's one of the big

problems

in autism, isn't it? These sulfur players have gone AWOL, and copper is

excessive at the expense of zinc. Dr. Bill Walsh has made excellent

presentations on this. You might think that carnosine plus zinc will act

to

put zinc in and take copper out. With these equilibrium constants and with

the natural copper content of food, that's very unlikely. You need a

million

or more zinc atoms for each copper atom to be competitive in this game!

Histidine/carnosine-copper wisdom has graduated into medical textbooks.

We're

not talking about research papers; we're talking what you should and

shouldn't do per medical texts. Copper homeostasis with histidine and

histidine-albumin complexes are well discussed by Danks, Chapter 58

of

Stanbury et al, The Metabolic Basis of Inherited Disease, 5th Ed,

p.1252-1254. For carnosine, the publicity is a bit worse. Carnosine is a

threat to worsened 's disease because it and its sister anserine are

such good importers of copper to body tissues. Ref: Scriver CR and TL

,

Chapt 26 in Scriver et al eds, The Metabolic Basis of Inherited Disease

6th

ed McGraw-Hill (1989) 765.

Now, let's go to the really bad guy here, beta-alanine. To be concise:

beta-alanine blocks renal conservation of taurine and causes

hypertaurinuria

- loss of taurine in the urine. This, in turn, causes urinary loss of

magnesium, which worsens sulfotransferase activity as well as lots of

other

necessary enzymatic processes. If you give carnosine, you lose taurine and

magnesium. There are lots of references, but you can start with Dr.

Scriver's work referenced above, because all of this biochemistry

(carnosine,

beta-alanine, taurine, etc.) is closely related.

Did you know that, years ago, Monsanto had a R & D project to replace

Aspartame

with a beta-alanine dipeptide, because of patent expiration? Chemical and

Engineering News published a notice, and the project was canned shortly

thereafter. I'd like to think that it was because chemists, including me,

wrote them letters about beta-alanine. The public can be grateful that

product never made it into circulation.

Oh, I forgot to tell you why FIGlu sometimes goes up in autism. A bunch of

credit on this goes to Dr. Sid Baker who observed it. Give folate and

FIGlu

goes up, not down, in some autistics. After some quick library work I

found

that the FIGlu -to-formiminoTHF enzyme requires pyridoxal 5-phosphate.

This

needs more study, a lot more, but with Dr. Tapan Audhya's finding of very

slow P5P formation in autistics, it fits.

In summary, giving carnosine to the average autistic will at first cause

perceived improvement - probably due to the FIGlu-push effect. After some

weeks, taurine loss, copper accumulation, magnesium loss, etc. can,

unfortunately, reverse the trend and may leave you with a worsened

condition

to deal with.

Jon B. Pangborn, Ph.D.

Fellow, American Institute of Chemists

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[Guest guest]

Hello-

Most of the time I am a lurker on this site, but I did post this question once

in the past. Has anyone tried carnosine as a supplement? Did you have any

success or failure with it? My almost three year old has been on it for a

little over two months and we are currently 23 days without a grand mal-the

longest ever! (Usually they come every eight days to two weeks) We have also

seen a decrease in his daily absence seizures. I would love any input that

anyone may have.

Thanks,

Anne

[Guest guest]

Hi Anne

My son takes Carnosine and I will say that I really haven't seen any great

change in him nor his seizures. The only change that I have seen is that he

hasn't had mycolonic seizures while awake. What dosage are you giving? Will

takes 1 125 mg in the morning and one at night.

Take Care

Lori

[Guest guest]

Hi Anne

I would like to know what Dr. Chez has to say also, please keep me updated. I

think I'm going to increase Will's dosage to 250 mg at night I don't give me

any in the afternoon because he is in school until 3 pm and school won't give

them unless they have a note from his doctor. I would love to see dr. Chez

one day just to get a second opinion.

Do you use any other supplements?

Take Care

Lori

[Guest guest]

Dear Lori,

Elliot is on 125 mg morning and evening and 250 mg in the afternoon. I know

that that is considered a low dose-some kids take up to 1800 mg a day. A

friend of mine is giving it to her daughter for apraxia due to heavy metal

poisioning, but hasn't seen any changes in speech. She has her on the same dose

as your son. Her daughter does not have seizures. She is going to see Dr.

Chez on Jan. 13th and I am curious to see what dose he suggests for her size.

Anne

[Guest guest]

The dose of the medication will be different with every person for we are all

individuals. It is based on the weight of the child as well as the type of

seizures that is being experienced. Some may need more or less than others

for good control. It make take months to years to find the perfect dose.

That is why blood levels are taken regulary to check and see where you are

and the progress made to see if a little more or a little less is need for

perfection. Please give the new medication about 6 weeks to fully get in the

blood system before you judge the progress of it.

I wish your child the best. Take care and please feel free to ask people in

here questions for we are all here to support each other.

[Guest guest]

> Elliot is on 125 mg morning and evening

> and 250 mg in the afternoon. I know

> that that is considered a low dose - some

> kids take up to 1800 mg a day...

MARY ANNE:

I mostly lurk here, but I'm interested

in where you get your dosing information

on the carnosine?

We just started our daughter (...intractable

seizures...) on it about three months ago,

and have seen no observable changes

one way or the other. Everything I had read about

the dosing indicated that Dr. Chez uses the same

basic strategy for all the kids in his study, i.e..., 400mg per day.

Is this, in fact, just the beginning target dosing? After reading on

lists like this one that some parents are going much higher, we did

increase our dose to 600mg per day..., but you're saying that the

500mg per day for your son is considered a low dose. Anyway, I

perceived from the rest of your note that you see or at least have in

the past seen Dr. Chez yourself, so if his dosing strategy is

significantly from what I outlined above, it sure would be nice to

know.

How high should we go before giving up on it?

What is the recommended increment of increase?

How long to stay at each level before increasing?

These are some of the questions I would be most interested in hearing

about.

Thanks alot,

Tim

[Guest guest]

have you tired dmg?

[Guest guest]

Ann:

Try a medium dose of vitamin B. It helps the brain to focus

and respond.

I was given this vitamin after my brain surgery. It also helps the blood

levels to remain strong.

[Guest guest]

Dear Lori,

I will let you know what Dr. Chez tells my friend. Her daughter is

approximately 50 pounds and my son is currently 40 pounds. I have tried other

supplements in the past that I know have worked for other people with seizures

(B vitamins, carnitor (another amino), cal/mag, vitamin E, etc.) but none of

those seemed to make a difference in Elliot's seizures. I have kept trying

supplements because the doctors classified him as idiopathic and could not find

anything metabolically of physically wrong with him.

Anne

[Guest guest]

Dear Tim,

My son Elliot was diagnosed with idiopathic seizures, so I began trying

different supplements on my own along with his prescribed medication. I know

that every seizure case is different. Elliot usually experiences grand mal

every 8 days to two weeks that always have to be stopped with diastat (they

never peak on their own). He also has a couple of dozen absence seizures a day

without loss of consciousness. He is currently on depakote with poor control,

but has had increased seizures when placed on Tegretol and Keppra. That being

said, I am no expert in carnosine but we have seen a positive response from

it. I have tried other supplements such as cal/mag, B vitamins, E, and

carnitor, but none of these seemed to effect him.

My info for doses comes from a print out that we received with the carn-aware,

or you can see it at www.carn-aware.com/faq.html. From what I understand from

the mom whose daugter is taking this for apraxia, the doses for seizures are

usually higher than for apraxia. I began him at 125 mg morning and night.

After about 3 weeks, I added an afternoon dose. A week or so after that, I

noticed a decrease in his daily absence seizures (and an increase in speech-he

is also apraxic). I decided to up his afternoon dose because in the past on

prescribed meds he is usually on a higher level to get the right blood levels.

(So again, no professional medical input here.) I love my neuro, but she isn't

into natural cures. Her opinion is if you want to try them they can't hurt,

but they probably won't help either. Also, let me stress that I never took him

off his daily meds while doing this. However, he has been on depakote for 14

months with the same seizure control since day one until we added the carn-

aware.

I have not met with Dr. Chez yet, but I am considering making an appointment.

My friend who is going to see him next week had to wait over 3 months for her

appointment. We live outside Chicago and a local TV station did a story on him

with his success in using carnosine for autism and apraxia, and they were

inundated with appointment requests. If you would like to try to contact him,

I know the phone number is on the website.

If I can answer any other questions, please let me know!

Anne

[Guest guest]

> My son Elliot was diagnosed with

> idiopathic seizures, so I began trying

> different supplements on my own along

> with his prescribed medication. I know

> that every seizure case is different.

> Elliot usually experiences grand mal

> every 8 days to two weeks that always

> have to be stopped with diastat (they

> never peak on their own). He also has

> a couple of dozen absence seizures a day

> without loss of consciousness. He is

> currently on depakote with poor control,

> but has had increased seizures when placed

> on Tegretol and Keppra. That being said,

> I am no expert in carnosine but we have

> seen a positive response from it. I have

> tried other supplements such as cal/mag,

> B vitamins, E, and carnitor, but none of

> these seemed to effect him.

Our daughter Lydia's epilepsy is also considered idiopathic; although

the official diagnosis during her initial acute phase was

encephalitis, etiology unknown... Dissatisfied, we undertook our own

investigation and have been persuaded that vaccines were contributory.

She has approximately 20-50 seizures per month -- complex partial,

secondarily generalized, multifocal -- and sleeps afterward for 1-2

hours about 75% of the time. We also use diastat, but have not done

so nearly as often as you apparently do. We only use it when a

single seizure shows no sign of stopping on its own within 5-8

minutes, and/or when the seizures are rapid-fire/serial in nature,

i.e..., awakens from post-ictal sleep in the next one...

Lydia was discharged from an initial 15-day hospitalization

(...associated with her very first seizure...) on a triple AED

combination. She has been on three drugs throughout, except for a

couple of brief periods of time when she was on only two when we were

in transition. We went for about a year before becoming aware of

some of the nutritional and vit/min supplementation methods

available. Since then, Lydia has taken a pretty wide range of

things, in addition to dietary modifications. ly, we have seen

no real difference no matter what we have tried.

Until this past week, carnosine was the latest new thing we had added

to her regimen. I see now that we need to try ramping up her dosage,

which we will do. As of last week, we just started a trial on

Transfer Factor. We decided on the Chisolm Labs product, and are

going to give it 2-3 months. The folks there have told us that if it

proves to be effective, it should do so within that time frame. We

shall see...

> My info for doses comes from a print out that we received with the

> carn-aware, or you can see it at www.carn-aware.com/faq.html. From

> what I understand from the mom whose daugter is taking this for

> apraxia, the doses for seizures are usually higher than for

> apraxia. I began him at 125 mg morning and night. After about 3

> weeks, I added an afternoon dose. A week or so after that, I

> noticed a decrease in his daily absence seizures (and an increase

> in speech-he is also apraxic). I decided to up his afternoon dose

> because in the past on prescribed meds he is usually on a higher

> level to get the right blood levels. (So again, no professional

> medical input here.) I love my neuro, but she isn't into natural

> cures. Her opinion is if you want to try them they can't hurt, but

> they probably won't help either. Also, let me stress that I never

> took him off his daily meds while doing this. However, he has been

> on depakote for 14 months with the same seizure control since day

> one until we added the carn-aware.

Our neuro is very similar. He doesn't discourage us from trying

different things, but will not assume any kind of proactive role at

all. We asked him once to serve as our physician monitor if we tried

the IAHP (http://www.iahp.org) AED detoxification program, and he

absolutely refused; as well as heaping ridicule on the whole IAHP

enterprise.

> I have not met with Dr. Chez yet, but I am considering making an

> appointment. My friend who is going to see him next week had to

> wait over 3 months for her appointment. We live outside Chicago

> and a local TV station did a story on him with his success in using

> carnosine for autism and apraxia, and they were inundated with

> appointment requests. If you would like to try to contact him, I

> know the phone number is on the website.

>

> If I can answer any other questions, please let me know!

Thank-you, Anne.

Tim

[Guest guest]

Tim:

I am sorry about your daughter. I am 40 and my seizures also began by

having enchephalitis at age 2 . I ran a fever of over 102 for 8 days before

it broke. I am presently taking Keppra, Trileptal, and Lorazepam for fair

control. I usually go about 3 months apart before having a severe grandmal.

But when I have a seizure, I usually get hurt. Like this past friday, I had

a grandmal sitting here at the computer and got my leg hung on the desk and

hit my head on the monitor. I got a hairline cracked cheek bone, one

shoulder severly bruised as well as my right let bruised from my knee down to

my ankle.

I have had my legs broken, arms broke, head split open and one year I

crushed both ankles, broke my arm and got 36 stitches in my head on the forth

of july from falling off our front porch having a seizure.

I have also undergone the right temporal lobotomy but it did not help. I

am being tested for the VNS IMPLANT next month. I have to keep trying. I

have nothing to loose and everything to gain if it works.

I will say a prayer for your family for I know the stress of having a

family member having epilepsy because when I was 19, I had an older brother

to die having a seiure. It was the first of my 4 nervous breakdowns.

Wish you a very happy and seizure free new year.

[Guest guest]

Joanne

All those with Fragile X seem to have fragile iron metabolisms, and as well

Metallothionein promotion problems.

I would personally look into chelating iron out of the brain, Dr Cutler, in

my paper could help you.

www.childscreen.org

Go to proposal #2 and glance down at references for a phone number -

Fragile Xers are iron loaders.

Kathy

[ ] Carnosine

> Hello. I have an 11 year old boy with Fragile X Syndrome, a

> hereditary form of mental retardation/autism. 20% of people with FX

> will develop seizures....as my son did at age 6.

> After 5 years of poor seizure control on AED's...I've started

> researching and trying nutritional means. All his bloodwork comes

> back normal, including for food sensitivities/allergies. His

> neurologist and pediatrican are only good for ordering lab work (that

> I request) and writing prescriptions (they always ask me what do I

> want to do) So I've been on my own basically. Nice to find you

> folks.

> Cody's seizure 'patterns' seem to be a simple or partial complex

> about once a month and a generalized status about once a year.

> He's on Tegretol and Neurontin currently, but I've also started him

> on supplements. He has been on 1000mg of carnosine for about a

> month...but he had a small seizure the other day, so I've increased

> his Carnosine to 1500mg (he's 165 pounds...overweight) I remember

> reading that Dr.Chez had used up to 3000mg with no bad effects.

> I also increased his Vitamin E (complex with tocotrienols and

> tocopherols) to almost 700IU a day. Taurine-2gms,

> DMG-375 mg, magnesium-772mg, zinc-40mg, selenium-280mg, DHA 240 and

> EPA 360, CoQ10 75mg and melatonin 2.5.

> Anyone care to comment of this regimen???? It's only been a couple

> days at these doses. Also, he's on a B-complex which will change as

> soon as I get my order of individual B's (don't want to go over

> 400mcg of Folic Acid, but want to increase certain B's and I can't do

> it with the complex)

> Also coming with my order will be glycine and manganese.

> I hope I'm not going to throw his body chemistry all out of whack

> with this 'shotgun' approach, but the whole AED approach is

> apparently not working.

> Most of this information came from Vitamin Research Products and

> other sites off the web. They all seemed pretty consistent regarding

> most of the supplements.

> I've also ordered Saiko-Keishi-To....a japanese herbal combination

> that has showed good results. Anyone familiar with this? I didn't

> find it in the archives here.

> Sorry to go on so long. I'm hoping to hear some feedback.

> Happy New Year to all.

> aloha, joanne

>

>

>

[Guest guest]

Joanne,

Thanks for sharing your plan. I am still trying to find something to help my son

as well. I will tell you what nuturionalist Diane Craft advised me. Only add one

supplement a week to your childs regime so that you can see what effect it is

giving (if any). Once he is taking and tolerating a supplement then you can teak

the amount, but don't add more than one supplement at a time. She also suggests

taking the supplement along with the child so you can see if you experience any

side effects in case the child is not able to communicate the side effect to you

properly. Good Luck. Keep us posted.

M

[Guest guest]

Dear ,

Thanks for recommending the B vitamins. I have tried Elliot on them and they

have not made a difference in his seizures. I was particularly hopeful when he

tried them as our family is vegetarian. I do try to watch the kids B intake,

but I was sure that it would prove to be a bigger factor in his seizure

management than it actually was.

Anne

[Guest guest]

Tim-

I did not ask you how old Lydia was. I don't know if this will make a

difference in your situation, but here is an update with Elliot. He is just

about to turn three and all along we have been told that his MRIs are normal

except for a small edema (swelling) that is most likely the point of

focalization of his seizures. The swelling is a result of the seizures and not

the cause. He just went in for another MRI yesterday because they can get a

better look at his brain development because he is over two (the others were at

8 months and 1 1/2 years). Since he has had such poor control with the AEDs

the neuro thinks it might be cortical dysplasia. That would mean that when his

brain was developing in utero, some of the cells might not have migrated

outward to form the myelin sheath. Those cells could cause " disruptions " in

the brain and result in the seizures. This is the first time this was ever

mentioned to us by either of the neuros we saw. I have tried to do a lot of

research into the various causes of seizures and I never ran across it.

Also, our neuro has told us before that she usually does not prescribe more

than two AEDs together and will try to wean new patients down to one or two.

In her experience, you usually don't get any better seizure control and usually

more side effects, sometimes even more seizures. I really don't know if this

is right or wrong, but I thought I would pass it on. What I have disliked

about the times when Elliot was on two AEDs was how it seemed to affect his

coordination. The poor kid was falling constantly and was always covered with

bruises.

I feel for your Lydia and your family. It is such an awful thing to have to

watch your child go through. I truly hope the carnosine or the Transfer Factor

work for her.

Anne

[Guest guest]

Marriane,

i'm curious if you have tried Taurine - especially since you mentioned being

vegetarian ? Has anyone on this list had any luck with Taurine ?

-----

[Guest guest]

MARY ANNE,

I READ YOUR MESSAGE AND IT RELATES TO MY CHILD ABOUT THE AEDS MAKING YOUR CHILD

LESS COORDINATED. WHEN MY LITTLE GIRL WAS ABOUT 1-2 YRS. SHE WAS ON SUCH HIGH

DOSAGE OF DRUGS THAT SHE WAS ALWAYS OUT OF IT AND SEEMED TO BE DOPED UP ALL THE

TIME. SHE WAS ALWAYS SLEEPING OR JUST LAYING AROUND. LOOKING BACK I DON'T KNOW

IF THIS ADDED TO HER DELAYS OR IF SHE WAS ALREADY DELAYED. NOW SHE IS FINALLY

CATCHING UP ON SOME THINGS BUT NOT VERY MUCH.

YOU MAY ASK THE DOCTOR IF YOU CAN HAVE HIM CHANGE THE DOSAGE TO HELP WITH THE

COORDINATION AND OTHER THINGS. THIS MAY HELP. I HOPE IT DOES.

AMY

[ ] RE: Carnosine

Tim-

I did not ask you how old Lydia was. I don't know if this will make a

difference in your situation, but here is an update with Elliot. He is just

about to turn three and all along we have been told that his MRIs are normal

except for a small edema (swelling) that is most likely the point of

focalization of his seizures. The swelling is a result of the seizures and

not

the cause. He just went in for another MRI yesterday because they can get a

better look at his brain development because he is over two (the others were

at

8 months and 1 1/2 years). Since he has had such poor control with the AEDs

the neuro thinks it might be cortical dysplasia. That would mean that when

his

brain was developing in utero, some of the cells might not have migrated

outward to form the myelin sheath. Those cells could cause " disruptions " in

the brain and result in the seizures. This is the first time this was ever

mentioned to us by either of the neuros we saw. I have tried to do a lot of

research into the various causes of seizures and I never ran across it.

Also, our neuro has told us before that she usually does not prescribe more

than two AEDs together and will try to wean new patients down to one or two.

In her experience, you usually don't get any better seizure control and

usually

more side effects, sometimes even more seizures. I really don't know if this

is right or wrong, but I thought I would pass it on. What I have disliked

about the times when Elliot was on two AEDs was how it seemed to affect his

coordination. The poor kid was falling constantly and was always covered with

bruises.

I feel for your Lydia and your family. It is such an awful thing to have to

watch your child go through. I truly hope the carnosine or the Transfer

Factor

work for her.

Anne

[Guest guest]

Dear ,

We have not yet tried taurine. I had read a little about it and I am

also curious if anyone here has tried it with a positive or negative

effect. What dosage was being used?

Thank you,

Anne

[Guest guest]

> I did not ask you how old Lydia was.

Lydia is 7 -- will turn 8 in April.

She was 5 when the seizures started.

> I don't know if this will make a

> difference in your situation, but

> here is an update with Elliot. He

> is just about to turn three and all

> along we have been told that his

> MRIs are normal except for a small

> edema (swelling) that is most likely

> the point of focalization of his

> seizures. The swelling is a result

> of the seizures and not the cause.

Lydia's MRI's (3 so far) have been

interpreted as completely normal..., no

" excepts " . I find your comment about

Elliot's MRI anomaly interesting. Maybe

my understanding is just way off here,

but how can a seizure directly cause any

kind of brain swelling?

Later on you mention cortical dysplasia,

which is certainly documented to be: (1)

detectable in imaging studies as edemous

areas, and (2) associated with seizures,

probably a causal relationship.

In other words, seizures don't cause

cortical dysplasia; but cortical dysplasia

may cause seizures. I did a quick search

and found the following posting from 1998:

http://www.medhelp.org/forums/neuro/archive/10229.html

> Also, our neuro has told us before that she usually does not

> prescribe more than two AEDs together and will try to wean new

> patients down to one or two. In her experience, you usually don't

> get any better seizure control and usually more side effects,

> sometimes even more seizures. I really don't know if this is right

> or wrong, but I thought I would pass it on. What I have disliked

> about the times when Elliot was on two AEDs was how it seemed to

> affect his coordination. The poor kid was falling constantly and

> was always covered with bruises.

This is probably right reasoning, but there can be no hard and fast

rules for it. Lydia has been on a 3 drug combo since the early

stages because thats what it seemed to require to get us out of the

PICU. I agree about the disruptive effects the meds have on

coordination. After a seizure, Lydia's coordination is negatively

effected too. Usually these transient effects disappear within a few

minutes, but on rare occasions it has taken a couple of hours for her

to overcome the stroke-like effects, i.e..., one-sided weakness,

slurred speech, drooling, etc... Other factors also come into play.

Obviously, auras are preferred. Some of the aura phenomenon is bound

to be cultivated. Of course, when dealing with youngsters, this is

quite pronounced. Lydia, over time, has grown to recognize aura. In

the beginning she never showed any indication of such. It seems

certain meds mask aura or even prevent it. Obviously, we try and

identify those as quickly as possible and stay away from them. But

that is hard too, because another thing we've noticed is that it

usually takes several months for any drug change to stabilize; and

even then, when dealing with children, the " stabilization " may be

short-lived due to growth and maturation processes. The dynamics are

simply exasperating!

> I feel for your Lydia and your family. It is such an awful thing

> to have to watch your child go through. I truly hope the carnosine

> or the Transfer Factor work for her.

Thank-you, Anne. We hope so too, of course. And we also wish

you the very best with Elliot. It sounds like surgery could be a

consideration at some point. Although I would have a very hard time

considering such an invasive procedure, just knowing that the

potential option is out there, even if only as a last resort were

things to digress, would be comforting in a sense.

To be honest, our attitudes have begun to shift away from finding

a " cure " -- even though we still harbor a germ of that hope deep

inside -- and toward finding just the right mix of things that will

optimize manageability. The TF is engineered to function in

assisting an inept neuro-immune system to clear viral material that

has become locked in (...my lay-understanding of it...). I'm

convinced that Lydia's initial encephalitic insult was vaccine-strain-

virus-induced, but I'm not convinced that the ongoing sequela, in the

form of uncontrollable seizures, has much to do with that initial

insult. It amazes me that, in this day and time, with the advance in

research technology, more is not understood about the mechanism of

seizure at the molecular level.

Just like you and all the others on this and many other similar

lists, we will continue to search for and try new things. It has

become the defining issue in our lives.

Tim

[Guest guest]

> We have not yet tried taurine. I had read

> a little about it and I am also curious if

> anyone here has tried it with a positive

> or negative effect. What dosage was being used?

MARY ANNE:

Mark Schauss has had some success with taurine,

I believe. He could give you alot of good info

on it. Lydia has been taking 500mg per day for

about three months. We put her on taurine the

first time about a year and a half ago, but stopped

it at the docs recommendation after amino acid plasma

analysis results revealed a high level. We put

her back on it recently, but if there is some kind

of absorption problem, I'm not sure what other

changes would be needed to counter it.

Tim

[Guest guest]

:

Thank you so much for the information about Taurine. I had never

heard of the medication and I was just wondering if my epitologist would

might consider trying me on that before we agreed to go with the VNS IMPLANT.

I am real nervous about it but I really have no choice. The grandmals are

getting violent and with no warning what so ever. I am getting hurt. I

have pettie mals, grand mals, and also seizures in my sleep that awaken me to

go into a grand mal.

I am willing to try anything. I hae an appointment with my doctor on the

27th about all this. I need some help. Any advice?