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Hi ,

Will has myoclonic seizures, he has had absence seizures but his true

diagnoses is myoclonic. He started having them at 9 months old. he is now 3.

I was told you have to go in the hospital for 4 weeks to start the diet?

Take Care

Lori

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We've added carnosine at the recommended dosage (400mg 2x a day) and

have seen nothing. I understand it takes a while to see

improvements, but I saw it immediately in my younger son. We'll wait

a while and see...

Marina

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Lori,

had mycolincs and absence too. It takes 2 or 3 days to start the

diet it the hospital. Where do you live?? We went to JHOP the first time.

Bad experience. The second time we went to Lake Forest Hospital in Chicago.

Also bad experience.

is on a low ratio. Both times we started at a 4:1 and he got

really ketotic, then anorexic, then dehydrated. BUt both times, his seizures

stopped. Well, after we stopped the diet, his seizures came back so we

started him on the Atkins diet for awhile and that worked, then we worked up

to a 1:1 ratio and it is working great. Its really not bad and you can make

soft foods for him.

Let me know if you want any info or if I can help

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Okay, let me ask a dumb question here....what is carnosine and what does it do?

Thanks,

Becky

----- Original Message -----

We've added carnosine at the recommended dosage (400mg 2x a day) and

have seen nothing. I understand it takes a while to see

improvements, but I saw it immediately in my younger son. We'll wait

a while and see...

Marina

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I emailed Jomar and they said that there Carnosine is just that only

Carnosine powder but capsules have Mag sterate in them.

I also emailed Carn-Aware and I'm waiting for a response

Lori

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Good question and I am so glad you asked this. I don't have the answer,

but I hope to use carnosine in the near future and would like to be sure I

give the safest one also. I look forward to the answer.

Kim

-- In @y..., PL9071@a... wrote:

> Hi

> I have posted different articles about the Carnosine but now my question is

> Where is everyone getting there's.

> I got my first set from Carn-Aware, I heard about Beyond-a-century.com, there

> is Jomar Labs.com

> I'm just curious I plan on still giving it to Will but I want to make sure I

> give him the safest one available.

> Thanks

> Lori

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,

There have been a number of posts recently on the gfcfkids site from parents

that are using this with their kids. Maybe you could find some info there that

would help.

Barb

carnosine

There was a show on this week on Global about a test group of children using a

supplement called Carnosine. Here is the research abstract

http://www.carn-aware.com . The studies were done by Dr.Chez in Chicago, the

results were impressive. I have had several calls from other parents locally

asking about it. Is anyone on this list familiar with it? I would appreciate

your input.

Thanks,

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Kathy, Is your child apraxic, speech delayed, austic, ... I use CLO

ProEFA ProEPA and Nuthera with p5p. However, I started with the GFCF

diet and my apraxic and speech delayed child turned around

miraculously. Now we are off the diet but use enyzmes. I added fish

oil about a year ago and we saw great gains in expressive language,

and balance and gross motor. I am considering carnosine but some well

documented articles posted here, one which the author was Jon Pangborn

really scared me so I am waiting to get more info.

My point in writing you was if you havent tried going Gluten Free and

Casein Free with diet or using enzymes (I use the one by HoustonNI)

you might want to try that before the carnosine.

Good luck!

> Does anyone have info on if you are not deficient in carnosine, will

> it work? I've tried almost everything from CLO to ProEFA, ProEPA

> combo, now on 4 EFALAX, Supernuthera, DMG, 5-HTP (any thoughts on 5-

> HTP), SECRETIN and starting on Monday will be seeing a Chiropractor

> for cranial-sacral and adjustments. Would like to try carnosine but

> has normal numbers on his bloodwork. Any thoughts are

> welcome. Thanks, You are all amazing. Kathy

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Hi ,

I agree with ...many parents have used the interventions you

describe but in conjunction with a gfcf diet . My son had very little

effect from supplements until we started to reintroduce after a

period of gfcf .( I guess until his gut was functioning properly he

couldn't process these properly !)

I would personally also recommend that you establish gfcf before you

try enzymes. I know that many would take a contrary view but my

reason is that my Charlie is one child who still cannot tolerate

gluten or casein , even WITH enzymes, so establishing gfcf first will

allow yopu to be clear whrther he has a prob with gluten or casein

before you see if enzymes will help it . The urine peptides test from

www.greatplainslaboratory.com (or ARU at Sunderland University in the

UK )will tell you if your child is likely to benefit- rather than any

blood tests.

Good luck with whatever you try !

Regards

Deborah

> > Does anyone have info on if you are not deficient in carnosine,

will

> > it work? I've tried almost everything from CLO to ProEFA, ProEPA

> > combo, now on 4 EFALAX, Supernuthera, DMG, 5-HTP (any thoughts on

5-

> > HTP), SECRETIN and starting on Monday will be seeing a

Chiropractor

> > for cranial-sacral and adjustments. Would like to try carnosine

but

> > has normal numbers on his bloodwork. Any thoughts are

> > welcome. Thanks, You are all amazing. Kathy

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There is lots about carnosine at http://www.speechville.com -most

from the CHERAB site. Speechville has a search function for the

site which makes it easy to find what you are looking for!

Also just an easy diet tip for those parents of late talkers that

don't even know what a gfcf diet or carnosine is yet -but have heard

of EFAs:

If you are supplementing with EFAs -try to decrease the amount of

fried or greasy foods that are loaded with saturated fats like

french fries or doughnuts. The " bad " saturated fats compromise the positive

effects of the " good " polyunsaturated fats -PUFA (the essential fatty

acids -EFAs)

If you don't have your child on a special diet and once in a while

take your child to Mcs etc. you can still buy a happy meal -

just take most of the french fries out and only leave a few. Just don't let

them see you do that

or you blew it! (Little kids

don't have a clue how many french fries they are supposed to get unless they can

compare)

Due to all the recent talk on diet and what is right and wrong -Dr. Agin is

asking some of the researchers in this area to address this for our

group! I'll keep you all posted.

I like Deborah's ending -so ditto and " Good luck with whatever you

try! "

=====

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This is only my second post and I'm still reading and learning lots

of stuff. I went ahead and bought the Coromega for my son, and some

carnosine. He makes almost no sounds at all, so we've got nothing to

lose. He's also a resiliant, fairly-healthy kid, and I'm glad that I

don't have to worry about what I give him as much as some of the

other parents, whose posts I read.

I have a question about the tip you posted, namely the balance of

fats in the diet. What I'm wondering is...is it possible that

whoever provided you that info was extrapolating from the advice

that's given to heart patients...when it might not hold true for

apraxic kids? I mean, I've seens tons of stuff written about the

balance between diferent kinds of fats for adults who are worried

about their hearts, but do we have a clue about how fatty acids get

into the neurological system and make those myelin sheaths? If my

kid's neurological system needs Omega 3 and 6 fatty acids, could it

be enough just to get them into his system without limiting other

fats? I'd really like to see some research papers, links, whatever...

Since my kid is hyperactive he uses a lot of calories, and his

pediatrician has even been concerned about his weight gain. I don't

want to take away his french fries unless I really have to! If I

swipe his fries, I'll be defeating my own diet, too. LOL!

Thanks for all the info.

> There is lots about carnosine at http://www.speechville.com -most

> from the CHERAB site. Speechville has a search function for the

> site which makes it easy to find what you are looking for!

>

> Also just an easy diet tip for those parents of late talkers that

> don't even know what a gfcf diet or carnosine is yet -but have

heard

> of EFAs:

>

> If you are supplementing with EFAs -try to decrease the amount of

> fried or greasy foods that are loaded with saturated fats like

> french fries or doughnuts. The " bad " saturated fats compromise the

positive

> effects of the " good " polyunsaturated fats -PUFA (the essential

fatty

> acids -EFAs)

>

> If you don't have your child on a special diet and once in a while

> take your child to Mcs etc. you can still buy a happy meal -

> just take most of the french fries out and only leave a few. Just

don't let them see you do that

> or you blew it! (Little kids

> don't have a clue how many french fries they are supposed to get

unless they can compare)

>

> Due to all the recent talk on diet and what is right and wrong -Dr.

Agin is

> asking some of the researchers in this area to address this for our

> group! I'll keep you all posted.

>

> I like Deborah's ending -so ditto and " Good luck with whatever you

> try! "

>

> =====

>

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Sounds good Suan - keep us updated on progress :)

Mandi in UK

> Listmates,

> For those of you who are interested in carnosine, I

> just wanted to give you an update. I started my

> non-verbal son on it 9 days ago. He's only up to

> 250mg/day, but I've already seen an increase in

> socialization. He's starting to play with kids at

> preschool, which he's never done. He always liked

> being around other kids, but didn't really play with

> them (except for his sister). Also, today I put on an

> alphabet video, which he's seen many times. Right

> after the opening credits and music, the video starts

> by showing each letter, one at a time, while the

> narrator says the letter. Well, after the intro

> music, he said " A " before they even showed the letter!

> Coincidence???

> BTW, we've chelated 10 rounds so far.

> Unfortunately, there was also some self-biting and

> hitting today, which we haven't seen in a while. It

> only shows up if he's getting sick or reacting to a

> new supplement. I'll be keeping a close eye on him

> for the next few days to decide which it is!

>

>

>

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I am new to this and was wondering if you could explain the GFCF diet and

where I can find more information about it.

Thank You

Heidi, mommy to 2 1/2

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> I am new to this and was wondering if you could explain the GFCF

>diet and where I can find more information about it.

I believe that the addy for this is www.gfcf.com

Marj

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Hi ,

It is gluten free casein free ( although it actually involves

excluding gluten, casein , MSG and artificial sweetners) .

It is based on the premise that some kids display certain behaviours

because of their inability to process certain proteins properly ,

primarily those in gluten and casein ( milk products ) .It does not

help every child, and it is not for every family , but many parents

do report success with reducing autistic triats , improving speech ,

communication , sociabilty and bowel problems. There are tests you

can do if you want to see if it may help .

A good site is www.autismmedical.com. It is UK based but it does have

some good info and links

Regards

Deborah

> I am new to this and was wondering if you could explain the GFCF

diet and

> where I can find more information about it.

>

> Thank You

>

> Heidi, mommy to 2 1/2

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> We have been doing chelation using the Andy protocol and stopped

last

> week to try carnosine. We're up to about 200 mg of carnosine twice

a

> day and have been seeing some very good language - we had one of

our

> best short conversations ever about art galleries - she wanted to

> know what an art gallery was - was it like an art fair, etc.!!!

Are

> there any negatives to using carnosine? Can she take it while

doing

> chelation?

She can take while chelating

>

> Thanks,

> Terry, mom to

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May I ask what your 5 yr. old weighs, and what dose you give him? And where you

get your carnosine? I've been thinking of trying it, but I think yours is the

first report of the effects on a nonverbal child like my boy.

Thanks,

s wrote:

> Just thought I would post a couple of notable happenings with Carnosine - I

introduced it about a month ago - I have two Autistics

> 9yrs and 5 yrs. 9yrs is very verbal and doing well anyway so its a bit hard

to judge but I can say he has settled down nicely seems calmer sleeping really

well etc. not that he was too bad before. But my 5 yr old non verbal - who

would pop out the very occasional no is actually repeating sounds nearly

everytime I try with him and we have had a few words - not consistent but

something is happening there. Also we have a coloured stacker with 5 red, 4

orange, 3 yellow tow green 1 blue - and I had tried and given up on the colour

matching - but last weekend he gave me his pecs picture for this toy and sat

down and consistently colour matched over and over really enjoying that he could

do this so I stepped in with " on " " on " etc everytime he put one on top and we

got a few " ons " out of him as well as the perfect matching.

>

> Also he is just so much more there in fact I am just not used to him bossing

me around - want want want directing me etc. and lots of cuddles and generally

in my face. Oh stamping his feet when I say no!

>

> Also we have a spa pool and I hid his pecs picture because this you just can't

do all the time - so he carried inside his little inflatable arm band and a

picture of the toilet! so yes he got a swim. He also did this for going

outside the other day he gave me his picture of his rideon car which is outside

and so I opened the door and he ran out - he just new I would open the door. So

you see something is happening and its really big!.

>

> My boys have terrible stomachs and cannot tolerate allot of supplements but

this does not hurt there stomachs at all.

>

> Regards

>

> Terri NZ

>

>

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Terri,

it is so exciting to read about your results. I am also trying

carnosine with my two autistic kids, 3 and 5. It's a bit difficult

to comment on what I see but I do believe that my 3yo has been less

echolalic lately and now initiates conversations more often and more

appropriately. My 5yo seems to fight me less. I am not up to the

full dose with them but I started very " low and slow " over a couple

of weeks.

, I ordered my carnosine from Beyond-a-Century, 1-800-777-

1324. My 5yo weighs 50 pounds and I plan on having him on 2 doses of

200 mg each eventually. Could someone tell me if it's the right

dose, please? Also, what would be the right dose for a 30-pound

child?

Natasha

>

> > Just thought I would post a couple of notable happenings with

Carnosine - I introduced it about a month ago - I have two Autistics

> > 9yrs and 5 yrs. 9yrs is very verbal and doing well anyway so

its a bit hard to judge but I can say he has settled down nicely

seems calmer sleeping really well etc. not that he was too bad

before. But my 5 yr old non verbal - who would pop out the very

occasional no is actually repeating sounds nearly everytime I try

with him and we have had a few words - not consistent but something

is happening there. Also we have a coloured stacker with 5 red, 4

orange, 3 yellow tow green 1 blue - and I had tried and given up on

the colour matching - but last weekend he gave me his pecs picture

for this toy and sat down and consistently colour matched over and

over really enjoying that he could do this so I stepped in

with " on " " on " etc everytime he put one on top and we got a

few " ons " out of him as well as the perfect matching.

> >

> > Also he is just so much more there in fact I am just not used to

him bossing me around - want want want directing me etc. and lots of

cuddles and generally in my face. Oh stamping his feet when I say

no!

> >

> > Also we have a spa pool and I hid his pecs picture because this

you just can't do all the time - so he carried inside his little

inflatable arm band and a picture of the toilet! so yes he got a

swim. He also did this for going outside the other day he gave me

his picture of his rideon car which is outside and so I opened the

door and he ran out - he just new I would open the door. So you see

something is happening and its really big!.

> >

> > My boys have terrible stomachs and cannot tolerate allot of

supplements but this does not hurt there stomachs at all.

> >

> > Regards

> >

> > Terri NZ

> >

> >

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We had pretty much the same affect. Maybe the three of us should compare

notes off-list to see if we can come up with some other common denominators

and then post those. It could help other parents in their decision process.

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My experience with Carnosine was not very good either.

I only gave it to my son (4 yo) for 3 days (about 100mg), because..... The

first day he was a little nervous and he couldn't sleep. The second day he

was a little nervous and emotional and he peed the bed during the night. The

third day I couldn't make him to concentrate to do things and then at school

he peed his pants (which Denis NEVER does) and he again peed the bed at

night.

So... I just stopped it. I do plan to try it again in the future, just to be

sure, but I don't put too much hope into it anymore. I don't think it works

for us.

Valentina

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> We had pretty much the same affect. Maybe the three of us should

compare

> notes off-list to see if we can come up with some other common

denominators

> and then post those. It could help other parents in their decision

process.

>

Please do this. Thoughtful information on what happened with real

people is invaluable, and unfortunately something seldom available

from physicians for a variety of reasons. Thus the only real help

other parents are going to get is if you do this.

Andy .. . . . . . . ..

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| My experience with Carnosine was not very good either.

| I only gave it to my son (4 yo) for 3 days (about 100mg), because..... The

| first day he was a little nervous and he couldn't sleep. The second day he

| was a little nervous and emotional and he peed the bed during the night. The

| third day I couldn't make him to concentrate to do things and then at school

| he peed his pants (which Denis NEVER does) and he again peed the bed at

| night.

| So... I just stopped it. I do plan to try it again in the future, just to be

| sure, but I don't put too much hope into it anymore. I don't think it works

| for us.

Somewhere (I can't recall where) I read of a woman who tried Carnosine on both

her ASD son and NT teen daughter. The

daughter had a 2 week long die-off detox type reaction, after which she both

felt and functioned better.

This experience, plus the hyperactivity and other bad reactions reported here,

would imply that you need to start out

with very tiny amounts of carnosine to those who have reacted badly to it, to

minimize the detox reaction. Once they

tolerate the tiny dose, gradually increase it.

I have taken a 500 mg. capsule of carnosine on 2 occasions and was extremely

tired the entire day. I plan to

retry this at night soon.

I heard that Carnosine detoxes the long chain fatty acids, which our kids have

in excess.

My daughter sees Dr. Chez's associate, and he told me that you should see

benefits with Carnosine after 8-12 weeks use.

I told him that I had my 60 pounder on 1000 mg/day and he said half of that

might be better.

She's been on it for a few months now, with no obvious ill effects, and she's

shown improvements during that period (but

then we do so many things, who knows why?). I'm using Vitaminshoppe's

carnosine, as she already gets E and Zinc, and

her neuro said this was fine.

K.

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100mg/kg for a rat for therapy of damaged brain.

Title

Carnosine Protects the Brain of Rats and Mongolian Gerbils against Ischemic Injury: After-Stroke-Effect.[Article]

Source

Neurochemical Research. 30(10):1283-1288, October 2005.

Abstract

Carnosine, a specific constituent of excitable tissues of vertebrates, exhibits a significant antioxidant protecting effect on the brain damaged by ischemic-reperfusion injury when it was administered to the animals before ischemic episode. In this study, the therapeutic effect of carnosine was estimated on animals when this drug was administered intraperitoneally (100 mg/kg body weight) after ischemic episode induced by experimental global brain ischemia. Treatment of the animals with carnosine after ischemic episode under long-term (7-14 days) reperfusion demonstrated its pronounced protective effect on neurological symptoms and animal mortality. Carnosine also prevented higher lipid peroxidation of brain membrane structures and increased a resistance of neuronal membranes to the in vitro induced oxidation. Measurements of malonyl dialdehyde (MDA) in brain homogenates showed its increase in the after brain stroke animals and decreased MDA level in the after brain stroke animals treated with carnosine. We concluded that carnosine compensates deficit in antioxidant defense system of brain damaged by ischemic injury. The data presented demonstrate that carnosine is effective in protecting the brain in the post-ischemic period.

Mediated of course.

Source

Neurochemical Research. 30(10):1339-1345, October 2005.

Abstract

Carnosine ([latin sharp s]-alanyl-histidine) and homocarnosine ([gamma]-aminobutyryl-histidine) are major constituents of excitable tissues, brain and skeletal muscles, but their physiological functions are yet unknown. Using primary cell culture systems, synthesis and uptake of carnosine exclusively by glial cells could be demonstrated. Uptake of carnosine was found to be mediated by a high affinity, energy-dependent dipeptide transport system, subsequently identified as the peptide transporter PepT2.

Clearly I need to know a great deal more before I try this, since it passes the blood brain barrier.

Regards

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