Re: Advice for 12 year old who just started having seizures

[Guest guest]

Always best to do some reading and then go from there... I suggest going to gaps.me or gapsdiet.com seeing if it's worth a while to try if so then to buy the book and Try diet intervention and the protocol she has in the book.Good luckSent from my iPod

Hi all. I have a friend whose son is 12 with autism and has just started having seizures. The local children's hospital has put him on anti seizure meds and she is petrified of the side effects. She has tried the biomed approach years ago but gave up.

Does anybody have any advice on some immediate natural things she can do to reduce the likelihood of seizures occurring? Or some examples of anti seizure meds that were helpful and safer than others?

Much appreciated

Debbie

[Guest guest]

Agree strongly re diet.

GABA, we go up to 700 mg for seizures, buy a good quality brand if you can like

Pure

http://www.amazon.com/Pure-Encapsulations-GABA-120-capsules/dp/B0015X4XEU/ref=sr\

_1_4?ie=UTF8 & qid=1327752596 & sr=8-4

Also a product called Zen which is GABA and theanine works well, much less gaba

though.

>

> Hi all. I have a friend whose son is 12 with autism and has just started

having seizures. The local children's hospital has put him on anti seizure meds

and she is petrified of the side effects. She has tried the biomed approach

years ago but gave up.

> Does anybody have any advice on some immediate natural things she can do to

reduce the likelihood of seizures occurring? Or some examples of anti seizure

meds that were helpful and safer than others?

> Much appreciated

> Debbie

>

[Guest guest]

Debbie,

It took a while to figure out triggers for my son, but we finally figured it to be hormonal related. (a fever will also set him off now since he started the vicious cycle) There is a web site that she can use to help figure out triggers, it's called https://www.seizuretracker.com/ It's super easy to use once you look around on there and see the things to use.

If her son seems aggressive or more manly acting the day or before a seizure, it might be hormone related. If so then looking at foods that estrogen producing and estrogen inhibiting and thenusing one fo each at every meal, along with a small to moderate amount of protein will help. Also a supplement from Life Extension called Triple Action Cruciferous extract . It helps to balance the hormones. http://www.lef.org/Vitamins-Supplements/Item01468/Triple-Action-Cruciferous-Vegetable-Extract.html

During pubertyy, the body tends to produce more excitotory amino acids and many time, it might be glutamate or aspartate rising too high as well. The seizure will usually occur at night or after a meal high in protiens.

Here are two good links she can read as well to help her figure out wha might be the casue. It took me nearly a year to figure out my son's with trial and error. Keepin diastat on hand was our method of treatment whiel figuring it out. That way I could stop a seizure ASAP if one happened.

http://www.autismcalciumchannelopathy.com/Abnormal_biomed_findings.html

http://www.mpwhi.com/seizures-convulsions.pdf

((Hugs))

Patty - mom to

www.caringbridge.org/md/myjesse

[Guest guest]

My son has seizure activity in his brain but only has visible seizures a few times a year. He does have crazy behaviorsthat I personally believe are tied to the seizure activity.We put him on a bunch of stuff in Sept that have changed him (while he is on them LOL)

and it seems that the most effective has been B6 + magnesium.Some people have to mess around with the strength of these and have to start from a low dose and move up.It's very individual.While my son was tested and does not supposedly have " the " gene (I think there must be more)

for B6 dependent epilepsy, he has responded incredibly well and I will not discontinue the B6 therapy with him,because as soon as I do, the aggression, elopement and selective mutism start creeping back in.He has not had a seizure since May 2011 but had all the whacky behavior up to mid Sept. when we started the B6 etc.

You can look up B6 and seziures in pubmed but I have found I get the most results usingpyridoxine in the search. Also, they call P5P by the name PLP so if you are searching pubmed, you may want to lookunder that too.

Here's the article I found that convinced me to try it with him (in addition to his low B6 levels)http://www.pndassoc.org/atf/cf/%7BC3CD1AA0-3DB0-43D2-ADA5-F1509D3000DE%7D/Surtees.pdf

 

Hi all. I have a friend whose son is 12 with autism and has just started having seizures. The local children's hospital has put him on anti seizure meds and she is petrified of the side effects. She has tried the biomed approach years ago but gave up.

Does anybody have any advice on some immediate natural things she can do to reduce the likelihood of seizures occurring? Or some examples of anti seizure meds that were helpful and safer than others?

Much appreciated

Debbie

-- --------------------------------------------------------------------------------------------Click to find info about Vitamins and Minerals:

http://www.facebook.com/note.php?note_id=10150543521682565--------------------------------------------------------------------------------------------

Click to find links to info about the Low Oxalate Diet :http://www.facebook.com/note.php?note_id=10150543495292565------

Toni------Mind like a steel trap...Rusty and illegal in 37 states.

[Guest guest]

Debbie,

To add a bit to what Toni said about B6: What may be occurring is a more

functional problem that could have to do with issues of membrane transport of

the vitamin, or the ability for it to work in an environment of oxidative

stress.

Magnesium and B6 are partners, and one needs the other to function. That's why

you always see them given together.

I've studied now more than 450 organic acid tests and have assembled a huge

database I use to find patterns. One thing that is obvious in these data is

that one of the first enzymes to " break " when there is low B6 activity is called

alanine:glyoxylate transaminase, and when it doesn't work properly, then the

glyoxylate that builds up because of the enzyme not working is instead,

intracellularly, converted by one of two other enzymes into oxalate, which is a

powerful pro-oxidant that can further deplete B6.

You won't find the literature on B6-dependent seizures talking about oxalate,

but it is likely it is in the picture. Unfortunately, the way research is done,

scientists define fields so narrowly that information that should be moving from

one field into another doesn't move to where it needs to move without a

cross-displinary push. That's what I'm doing...trying to get the oxalate

scientists to study outside the kidney.

This connection between B6 deficiency and oxalate is why doing a Great Plains

Organic acid test can help reveal if B6 issues are leading to endogenous

oxalate. That increased oxalate also causes so much oxidative stress that you

lose more B6 activity.

This issue doesn't that much get reflected in an OAT in high oxalate levels,

because oxalate being made intracellularly has little reason to leave the cell

and show up instead in urine. Even so, you can see the evidence of it being

there by other enzyme inhibitions reflected on the organic acid test. The

markers for this occurring (glycolic acid and glyceric acid) are not on OATs

from other laboratories except for Nataf's lab,

Some scientists found out, though, that when you are B6 deficient, and making

excess oxalate intracellularly, the combination can lead to as much as a

four-fold increase in creatinine secreted to urine. Creatinine was thought to

be stable and not secreted, so this ruins the creatinine correction of urine

concentration.

I noticed this pattern in my database when it only had 224 tests in it, and I

presented on this issue of changed creatinine to ARI's thinktank five years ago.

What this MEANS is that everything on the test will look low when creatinine is

elevated, but it is only a problem in using an inappropriate way to correct

urine concentration in a population that has issues in this area of the

chemistry.

So you might see if your friend has done a GPL OAT, or if they would like to do

so in order to see if this problem is reflected there and if this might furnish

a reason for the seizure onset. This might be especially easy to see if her

child has had a series of OATs that could be compared.

One of the other enzymes that breaks when B6 is deficient or has low activity

will leave glutamate (an excitotoxin) high in the synapses between neurons.

This is why scientists who have studied chinese restaurant syndrome (the big

deal with MSG) have found that this sensitivity will go away on B6 supplements.

This has been shown in blinded crossover studies.

I've developed a different way of adjusting for urine concentration which works

much better than creatinine, but only works on the Great Plains OAT. I don't

have enough tests from Nataf's lab to compute this adjustment from their tests.

I would be glad to do that adjustment for your friend's child's OAT, or series

of OATS if she would like.

At this point, I can look at my database of 457 tests and see when the chemistry

starts to fail in this area at a population level. However, it is impossible to

see this issue using the test from Great Plains just looking at it how it

arrives already ratioed to creatinine. The adjustment is necessary. Also,

their reference ranges on the relevant markers are way too high for them to flag

this B6 issue because it occurs at much lower levels than their ranges.

I hope this helps.

Owens (Autism Oxalate Project at ARI)

Eur J Paediatr Neurol. 2011 Sep 10. [Epub ahead of print]

A potential pathogenic role of oxalate in autism.

Konstantynowicz J, Porowski T, Zoch-Zwierz W, Wasilewska J, Kadziela-Olech H,

Kulak W, Owens SC, Piotrowska-Jastrzebska J, Kaczmarski M.

Source

Department of Pediatrics and Developmental Disorders, Medical University of

Bialystok, Poland.

Abstract

BACKGROUND:

Although autistic spectrum disorders (ASD) are a strongly genetic condition

certain metabolic disturbances may contribute to clinical features. Metabolism

of oxalate in children with ASD has not yet been studied.

AIM:

The objective was to determine oxalate levels in plasma and urine in autistic

children in relation to other urinary parameters.

METHOD:

In this cross-sectional study, plasma oxalate (using enzymatic method with

oxalate oxidase) and spontaneous urinary calcium oxalate (CaOx) crystallization

(based on the Bonn-Risk-Index, BRI) were determined in 36 children and

adolescents with ASD (26 boys, 10 girls) aged 2-18 years and compared with 60

healthy non-autistic children matched by age, gender and anthropometric traits.

RESULTS:

Children with ASD demonstrated 3-fold greater plasma oxalate levels [5.60

(5th-95th percentile: 3.47-7.51)] compared with reference [(1.84 (5th-95th

percentile: 0.50-4.70) & #956;mol/L (p < 0.05)] and 2.5-fold greater urinary

oxalate concentrations (p < 0.05). No differences between the two groups were

found in urinary pH, citraturia, calciuria or adjusted CaOx crystallization

rates based on BRI. Despite significant hyperoxaluria no evidence of kidney

stone disease or lithogenic risk was observed in these individuals.

CONCLUSIONS:

Hyperoxalemia and hyperoxaluria may be involved in the pathogenesis of ASD in

children. Whether this is a result of impaired renal excretion or an extensive

intestinal absorption, or both, or whether Ox may cross the blood brain barrier

and disturb CNS function in the autistic children remains unclear. This appears

to be the first report of plasma and urinary oxalate in childhood autism.

Copyright © 2011 European Paediatric Neurology Society. Published by Elsevier

Ltd. All rights reserved.

PMID:

21911305

>

> Hi all. I have a friend whose son is 12 with autism and has just started

having seizures. The local children's hospital has put him on anti seizure meds

and she is petrified of the side effects. She has tried the biomed approach

years ago but gave up.

> Does anybody have any advice on some immediate natural things she can do to

reduce the likelihood of seizures occurring? Or some examples of anti seizure

meds that were helpful and safer than others?

> Much appreciated

> Debbie

>

[Guest guest]

Your post about a 12-year-old child with autism starting seizures reminded me of

a book I read. Pediatrician Dr. Buckley's daughter has autism and started

seizures when she entered puberty. Dr. Buckley wrote the book Healing Our

Autistic Children. Her website is www.juliebuckley.com. Her practice is in

Florida.

>

> Hi all. I have a friend whose son is 12 with autism and has just started

having seizures. The local children's hospital has put him on anti seizure meds

and she is petrified of the side effects. She has tried the biomed approach

years ago but gave up.

> Does anybody have any advice on some immediate natural things she can do to

reduce the likelihood of seizures occurring? Or some examples of anti seizure

meds that were helpful and safer than others?

> Much appreciated

> Debbie

>

[Guest guest]

They might look into the ketogenic diet. There are some good testimonials

related to a formula called Ketocal that is used when one is on that diet. This

formula can be used in recipes also. Check out

http://www.myketocal.com/stories.html.

>

> Hi all. I have a friend whose son is 12 with autism and has just started

having seizures. The local children's hospital has put him on anti seizure meds

and she is petrified of the side effects. She has tried the biomed approach

years ago but gave up.

> Does anybody have any advice on some immediate natural things she can do to

reduce the likelihood of seizures occurring? Or some examples of anti seizure

meds that were helpful and safer than others?

> Much appreciated

> Debbie

>

[Guest guest]

GABA deficiencies have been indicated in seizures, BettinaSent from my Motorola ATRIX™ 4G on AT & T Re: Advice for 12 year old who just started having seizures They might look into the ketogenic diet. There are some good testimonials related to a formula called Ketocal that is used when one is on that diet. This formula can be used in recipes also. Check out http://www.myketocal.com/stories.html.--- In mb12valtrex , " Debbie Conn " wrote:>> Hi all. I have a friend whose son is 12 with autism and has just started having seizures. The local children's hospital has put him on anti seizure meds and she is petrified of the side effects. She has tried the biomed approach years ago but gave up.> Does anybody have any advice on some immediate natural things she can do to reduce the likelihood of seizures occurring? Or some examples of anti seizure meds that were helpful and safer than others?> Much appreciated> Debbie>

[Guest guest]

gluten free keeps my son seizer free but it also takes the school following as well no art supplies with gluten ect. taurine will also take up seizer threshold so if he is low in It, they will kick up

epilepsy can kick in around that age as well in the early teen years with puberity. for tori when you talk about LOOSEING skills with your seizers has laudu kleffner been ruled out with your child??

From: Toni Marie Lombardo

Sent: Saturday, January 28, 2012 10:02 AM

To: mb12valtrex

Subject: Re: Advice for 12 year old who just started having seizures

My son has seizure activity in his brain but only has visible seizures a few times a year. He does have crazy behaviorsthat I personally believe are tied to the seizure activity.We put him on a bunch of stuff in Sept that have changed him (while he is on them LOL)and it seems that the most effective has been B6 + magnesium.Some people have to mess around with the strength of these and have to start from a low dose and move up.It's very individual.While my son was tested and does not supposedly have "the" gene (I think there must be more)for B6 dependent epilepsy, he has responded incredibly well and I will not discontinue the B6 therapy with him,because as soon as I do, the aggression, elopement and selective mutism start creeping back in.He has not had a seizure since May 2011 but had all the whacky behavior up to mid Sept. when we started the B6 etc.You can look up B6 and seziures in pubmed but I have found I get the most results usingpyridoxine in the search. Also, they call P5P by the name PLP so if you are searching pubmed, you may want to lookunder that too.Here's the article I found that convinced me to try it with him (in addition to his low B6 levels)http://www.pndassoc.org/atf/cf/%7BC3CD1AA0-3DB0-43D2-ADA5-F1509D3000DE%7D/Surtees.pdf

Hi all. I have a friend whose son is 12 with autism and has just started having seizures. The local children's hospital has put him on anti seizure meds and she is petrified of the side effects. She has tried the biomed approach years ago but gave up.Does anybody have any advice on some immediate natural things she can do to reduce the likelihood of seizures occurring? Or some examples of anti seizure meds that were helpful and safer than others?Much appreciatedDebbie

-- --------------------------------------------------------------------------------------------Click to find info about Vitamins and Minerals:http://www.facebook.com/note.php?note_id=10150543521682565--------------------------------------------------------------------------------------------Click to find links to info about the Low Oxalate Diet :http://www.facebook.com/note.php?note_id=10150543495292565------Toni------Mind like a steel trap...Rusty and illegal in 37 states.

[Guest guest]

My daughter has had seizures for about 15 years. We have found we can use a lot less medication when I give her at least 2-4 capsules of fish oil twice a day.In general, we use half or less of the med than was prescribed. As long as she doesn't have any more seizures, we keep the med dose low and keep her on vitamins and fish oil.She is on carbomazapine.sally From: Christel Church

To: mb12valtrex Sent: Saturday, February 25, 2012 9:40 AM Subject: Re: Advice for 12 year old who just started having seizures

gluten free keeps my son seizer free but it also takes the school following as well no art supplies with gluten ect. taurine will also take up seizer threshold so if he is low in It, they will kick up

epilepsy can kick in around that age as well in the early teen years with puberity. for tori when you talk about LOOSEING skills with your seizers has laudu kleffner been ruled out with your child??

From: Toni Marie Lombardo

Sent: Saturday, January 28, 2012 10:02 AM

To: mb12valtrex

Subject: Re: Advice for 12 year old who just started having seizures

My son has seizure activity in his brain but only has visible seizures a few times a year. He does have crazy behaviorsthat I personally believe are tied to the seizure activity.We put him on a bunch of stuff in Sept that have changed him (while he is on them LOL)and it seems that the most effective has been B6 + magnesium.Some people have to mess around with the strength of these and have to start from a low dose and move up.It's very individual.While my son was tested and does not supposedly have "the" gene (I think there must be more)for B6 dependent epilepsy, he has responded incredibly well and I will not discontinue the B6 therapy with him,because as soon as I do, the aggression, elopement and selective mutism start creeping back in.He has not had a seizure since May 2011 but had all the whacky behavior up to mid Sept. when we started the B6 etc.You can look up B6 and seziures in pubmed but I have found I get the most results usingpyridoxine in the search. Also, they call P5P by the name PLP so if you are searching pubmed, you may want to lookunder that too.Here's the article I found that convinced me to try it with him (in addition to his low B6 levels)http://www.pndassoc.org/atf/cf/%7BC3CD1AA0-3DB0-43D2-ADA5-F1509D3000DE%7D/Surtees.pdf

Hi all. I have a friend whose son is 12 with autism and has just started having seizures. The local children's hospital has put him on anti seizure meds and she is petrified of the side effects. She has tried the biomed approach years ago but gave up.Does anybody have any advice on some immediate natural things she can do to reduce the likelihood of seizures occurring? Or some examples of anti seizure meds that were helpful and safer than others?Much appreciatedDebbie

-- --------------------------------------------------------------------------------------------Click to find info about Vitamins and Minerals:http://www.facebook.com/note.php?note_id=10150543521682565--------------------------------------------------------------------------------------------Click to find links to info about the Low Oxalate Diet :http://www.facebook.com/note.php?note_id=10150543495292565------Toni------Mind like a steel trap...Rusty and illegal in 37 states.

[Guest guest]

Thanks so much everyone who replied and offered advice for my friend's child

with seizures. I have passed on all your valuable information and tips.

Much appreciated

Debbie