carnosine

[Guest guest]

And isn't to be given between meals?

That food inferiors with its process?

Allie

<< Carnosine information >>

[Guest guest]

Allie,

Does food interfere with absorbtion or is it suppose to be given with

meals?? And are we taliking about carnosine or carnitine?

Deirdre

[Guest guest]

and Donna -

Tommy was diagnosed by Dr. Chez with both partial Landau Kleffner

syndrome and apraxia. On the anti-convulsants his seizures stopped

within weeks and his eeg has remained " clean " . In addition to the

anti convulsants,and the carnosine, he is also taking aricept ( yes,

the alzheimers medication, also prescribred by Dr. Chez), so it is a

little unclear what is helping what. Before we started carnosine,

Tommy had language (spoke in simple sentences). What the carnosine

seemed to do was to enable to speak more conceptually, to reason

expressivly, and generally to talk about more complicated things than

he ever could have before. The words just seem to come to him fairly

easily. But, he is still difficult for strangers to understand. As

for speech therapy, we have been going for almost three years, every

day (for one on one sessions). They are working on articulation, not

the language, which is there.

We use the carn aware supplement. I would recommend staying with

that one, if you can. I tried a brand I found at the health food

store once, and it was a disaster...it made Tommy even more hyper

than usual (not a good thing). Instead, carn aware has had no side

effects (at least so far).

As for the dosage, Dr. Chez seems to want to give as much as Tommy

can tolerate without side effects. So no, there was no typo, Tommy's

currently taking 1,200 mgs. 2x a day. It seems that children with

epilepsy can tolerate extremely high dosages, where (according to

what he told me in his office) children on the autistic spectrum can

tolerate much less (ie. 200mgs.). But, for both populations, it seems

to be extremely helpful.

He also said the studies on the web were pretty superficial and that

there was one serious study involving epileptics, which is why he

started testing carnosine. If you want to read that study, just e-

mail his office for the reference, they are very helpful.

Hope this helps.

(mom to Tommy, just turned 5)

[Guest guest]

> I've been reading about carnosine and I've seen the mention

>of the presence >of contamination in some. I have also seen

>multiple brands on line. Is there any info about purity

>available??????

>

> JoAnne NJ

JoAnne, we have only used just one brand, that is Pathway,

and we haven't had a problem with it. I get ours from

Dr.Kane's site: http://www.bodybio.com/

Best,

[Guest guest]

,

Could you please post how we can contact Dr. Chez's office? Where is he

located?

Thank you,

Vicky

[ ] Re: Carnosine

and Donna -

Tommy was diagnosed by Dr. Chez with both partial Landau Kleffner

syndrome and apraxia. On the anti-convulsants his seizures stopped

within weeks and his eeg has remained " clean " . In addition to the

anti convulsants,and the carnosine, he is also taking aricept ( yes,

the alzheimers medication, also prescribred by Dr. Chez), so it is a

little unclear what is helping what. Before we started carnosine,

Tommy had language (spoke in simple sentences). What the carnosine

seemed to do was to enable to speak more conceptually, to reason

expressivly, and generally to talk about more complicated things than

he ever could have before. The words just seem to come to him fairly

easily. But, he is still difficult for strangers to understand. As

for speech therapy, we have been going for almost three years, every

day (for one on one sessions). They are working on articulation, not

the language, which is there.

We use the carn aware supplement. I would recommend staying with

that one, if you can. I tried a brand I found at the health food

store once, and it was a disaster...it made Tommy even more hyper

than usual (not a good thing). Instead, carn aware has had no side

effects (at least so far).

As for the dosage, Dr. Chez seems to want to give as much as Tommy

can tolerate without side effects. So no, there was no typo, Tommy's

currently taking 1,200 mgs. 2x a day. It seems that children with

epilepsy can tolerate extremely high dosages, where (according to

what he told me in his office) children on the autistic spectrum can

tolerate much less (ie. 200mgs.). But, for both populations, it seems

to be extremely helpful.

He also said the studies on the web were pretty superficial and that

there was one serious study involving epileptics, which is why he

started testing carnosine. If you want to read that study, just e-

mail his office for the reference, they are very helpful.

Hope this helps.

(mom to Tommy, just turned 5)

[Guest guest]

J, you don't need to use a search engine to get there since you already

have the www address. Go to the top of your computer screen underneath where

you have pictures for print, favorites, files, etc and you will see a long

white rectangular box which may say " type search words. " When you go to a

site, its address appears in that white box. However, this time you know the

address, so just type in www.carn-aware.com Let me know if it doesn't

work. Carolyn

[Guest guest]

I have been hiding it in food and apparently it must not have any taste

because she is not spitting it out like my daughter would with an antibiotic.

I put it inside scrambeled eggs, fruit, inside rolled up turkey, applesause

or yogurt. How much are you giving? I am doing 400mg in a m and 400 mg (2

capsules) in afternoon. thanks, carolyn

[Guest guest]

I just wanted to add in case anyone was wondering, that when I put the

carn-aware powder into scrambeled eggs, they are already at room temperature,

not hot. I don't know if putting the carnosine in anything hot matters, but I

haven't done that. Carolyn

[Guest guest]

We have only started the carn-aware a few days ago so I don't know if it is

too soon to connect any progress to it. However, I have heard a couple new

words today and yesterday which is major progress for her. How about you?

Carolyn

[Guest guest]

HI Carolyn, thanks for repying to my post!

I just started a little over a week ago with just one capsule

(200mg), but this week will increase to 2 capsules(400mg). Putting it

in yogurt is a very good idea, thanks! My son is into those Gogurt

things so I will go back to the cup style so I can mix it in. Have

you noticed any changes?

Vivian in HOP Phoenix

Mom to DJ (5.1 moderate language delay and thats it)

> I have been hiding it in food and apparently it must not have any

taste

> because she is not spitting it out like my daughter would with an

antibiotic.

> I put it inside scrambeled eggs, fruit, inside rolled up turkey,

applesause

> or yogurt. How much are you giving? I am doing 400mg in a m and

400 mg (2

> capsules) in afternoon. thanks, carolyn

[Guest guest]

Hi Carolyn! Yeah, see that's what I was worried about that maybe the

heat would make the carnosine somehow inert or not effective, but I

guess if I let it cool all the way down and then mix it in the eggs

it wouldnt be a problem. I mixed it in applesauce with no problem and

I anticipate no problems with his fav yogurt, Trix!

I have noticed a bit more chattiness, but this is only week 2. I am

going to up it to 400mgs (2 caps) maybe next week, and also add the

ProEPA in the mix and see if this gives DJ a burst.

Vivian in HOT Phoenix

Mom to DJ (5.1 moderate langage delay and that's it)

> I just wanted to add in case anyone was wondering, that when I put

the

> carn-aware powder into scrambeled eggs, they are already at room

temperature,

> not hot. I don't know if putting the carnosine in anything hot

matters, but I

> haven't done that. Carolyn

[Guest guest]

Hi Vivian, I think yogurt and applesauce is probably the best way to mix the

carnosine powder. But I also have been taking zita macroni and bending the

macroni in half while I pour the powder in the inside hole of the macroni.

The bending makes sure the powder doesn't fall out the other side of the

macroni. Anyway, my daughter eats it up with no problem. Again, the powder

seems to have no distinct taste so that's good. Carolyn

[Guest guest]

Goodluck! We have had great success with it. We use 400 mg twice a day. We

went higher and saw him getting hyper.

[Guest guest]

When do you give it??

Lori

[Guest guest]

Where do you get Carnosine?

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

Goodluck! We have had great success with it. We use 400 mg twice a day. We

went higher and saw him getting hyper.

[Guest guest]

www.carn-aware.com

[Guest guest]

Lori,

We give his in the am with breakfast and in the pm with bedtime

snack.

We order it from www.carn-aware.com but you can get it cheaper through NOW

brand. We like the carnaware and it has other supplements in it that we

don't have to give him separately.

has a seizure disorder so he also takes a small amount of

depakote and he is on the keto diet on a low ratio(like the Atkins diet). We

also give him an EFA oil called Udos oil. This combination has worked wonders

for him. He still has some behavioral issues but to a lesser degree and his

talking is getting better every day. He is speaking in 5 word sentences and

totally verbal. Last year, he barely had 30 words.

Let me know if you would like any other info-

[Guest guest]

,

Will also has seizures, we are taking him off depakote because it surpressed

him so much he couldn't even function. Now we are putting him on lamictal.

how old is your boy? Will is almost 4. I give will coromega but I stopped

temporary because we were adding the lamictal and taking away from depakote

and of lamictal history. I was afraid of the RASH. But I will be starting it

back again.

Can you tell me about UDOS Oil?

Thanks

Take Care

Lori

[Guest guest]

: OK, you peaked my interest with this recent message. Let me get

this straight. You give carnosine the two times a day you

stated in your message, as well as Pro-EFA, or in lieu of Pro-EFA. Sorry

to sound so confusing, but when you mentioned that he went from 30 words to

5 word sentences in a year......I just about fell off my chair! That is

wonderful news!!!

Did you originally give the carnosine because of his seizure

disorder? If so, would you recommend this supplement if seizures are not

present? Also, how old is ? I am wondering if we could

benefit from this supplement also.

Thanks for all of your patience and this info. Good luck.

Kim

[Guest guest]

Kim.

We give him carnosine and pro EFA (Udos oil). Both twice a day. Carnosine

he gets 400 mg twice (800 total) and EFA he gets 1 tsp. twice a day. We

started the carnosine for the seizures but saw results with language and

processing immediately (within a week).

He is 4 and will be 5 in December. He is in a developmental preschool and

has been for the past 3 years. He still has delays but is doing great. We

are starting to have conversations like " what did you do at school today " and

he will say " I colored " and " i played with Sydney " and " I ate green jello and

yellow whip cream " and " I want to go home and ride my bike on the sidewalk

mom-please " and he will sing along with songs on the T V. With the help of

the supplements and a great SLP who works well with Apraxia, we are very

lucky. He still is delayed in his processing but is able to pick things up

now and get better. Also, we saw an improvement in his attention span.

Now, for us, we are seizure free also so that did interfere with his language

and behavior but the procesing problem has always been there and I know that

it is the carn aware AND the EFA b/c we ran out of it for a week and he feel

apart-drooling, slow, not talking and not suttle diiference-obvious ones.

Then a month ago I saw him kind of regressing- not as bad and I realized that

I had ran out of the EFA for about a week too. He really needs these

supplements.

I can only say that these things have changed our life. It is worth a try and

to see. BUt I would try one at a time-not both.

Good luck-

[Guest guest]

Lori,

We tried so many drugs and they just stunted his development. Have you ever

thought about the keto diet or even a Atkins diet? It has been our miracle.

He was diagnosed with Lennox Gasteua at 2 and his EEG has now been normal for

1 year. All that I can say is that it is nothing compared to the hell of the

seizures and the drugs. I would be glad to help if you want any info. I have

taken bits and pieces of all of the neuro enhancements and diet with the help

of Dr. Chez-our neuro in Chicago (we drive 4 hours). He is still on 325 mg a

day of depakote. He just needs that little bit and he is on a lower, less

restrictive diet b/c of having the drugs.

We started Lamictal but never got it to the level it should be b/c dr. chez

told us that it could mask his seizures but not change his EEG. His EEG must

change for him to get better. We tried Depakote, Zonegran, Keppra, Lamictal,

and Topomax. None worked and they all made him like a zombie.

is almost 5 (in December). At year ago he was not making any

progress and we were running out of hope. Now he is making gains and friends

and a happy kid (but still has moods that are worst than a womens PMS). I

nver dreamed that he would come this far and I am still afraid to dream for

him for tommorrow but I know that I will NEVER regret the choices we have

made.

Good luck with the Lamictal. I would research the diet if I were you. Let me

know if I can help-

[Guest guest]

Hi Lori,

> Can you tell me about UDOS Oil?

I am not , but I wanted to tell you that you can find out all

about Udo's Choice at this website udoerasmus.com

It has a lot of information there. I also give my son this oil (my

two older daughters and myself as well). My son just takes it by

the tablespoon. It seems to be working to me.

Alison

[Guest guest]

Hi Alison

Thank you for the link.

Take Care

Lori

[Guest guest]

Hi ,

Thank you so much you helped me a lot already. Yes, I did think about the

Keot diet. I have been do some reading on it, but Will has an underlying

metabolic issue's so he needs a higher protein, so I give him Pedisure every

morning. And where is low tone is severe he won't eat any food that is hard

or crunchy.

How long does someone stay on the diet? Is there an amount of time then you

need to come off?

Thanks again for your help

Lori

[Guest guest]

Lori,

is low tone too. His tone has gotten much better since reducing

the AEDs and not having seizures. I think the min. amt of time kids are on

the diet is about 2 yrs. For us, it is probably a lifetime thing. He is on

a modified diet, not as strict as the typical 4:1 ratio keto. He does fine

with that and doesn't need a higher ratio. What kinds of seizures does your

child have and how long has he been having them?