Re: Question to everyone.../carnosine info

[Guest guest]

Hi Adam!

Well since you brought this up and I'm sure anyone who is on this

list more than a week is ready to pull their hair out if they read

one more post about fish oil and the bathroom -I'll change the

subject -and supplement topic.

Yes Tanner is taking ProEFA (and extra EPA) and we now also have

started him on carnosine after speaking to some of the research

doctors behind the following study that Sallie Bernard from Cure

Autism Now was nice enough to post about here. To be honest I was a

bit nervous since I didn't know anyone that tried carnosine -and

neither did Sallie (I asked and looked) ...hey just like when Tanner

first tried fish oil 3 years ago!! Anyway I didn't find anything at

http://www.ncahf.org/ about it-which is good, and the doctor's

involved with the clinical research I spoke with really reassured

me. This same doctor sent the following information to me to share

with all of you.

It's only been a week, and hard to say if there is a change yet.

However, Tanner is already doing amazing according to all that

evaluate or hear him -and he's been on fish oil (first Efalex and now

ProEFA) for 3 years now. Plus he receives one on one therapy 3 times

a week 1/2 hour for speech, and once for OT, he's in karate and

swimming class, and we still do therapeutic listening if he gets a

bit dysfluent and that seems to help right away (however we are

taking him to a fluency expert Pat Trieber MA CCC/SLP PhD too just to

make sure) -we just started cranial sacral therapy which I highly

recommend looking into if you can find a doctor or therapist who is

highly skilled in working with children, getting him into the

educational games in computers, Playstation, Nintendo and Gameboy,

and along those lines -he's doing a great job at just being a regular

kid playing in general.

OK the good news about carnosine is that it's easy to give. It

doesn't have a taste or smell really so you just pull the capsule

apart and then add it to water. For some reason -Tanner seems to

mind it more than the fish oil however because the powder doesn't mix

into the water very well. I only give him one capsule a day (fish

oil is to help him talk better -I tell him this will help him to read

better)

And by the way -if anyone wants a list of supplements and results,

etc. Just check the archives by going to

-there are tons of them here

at this

list and at other groups like this one. If you don't know how let me

know!

~~~~~~~~~~~~~~~~~~~~~

Double-Blind, Placebo-Controlled Study of L-Carnosine Supplementation

in Children with Autistic Spectrum Disorders.

G. Chez, Lake Bluff, IL, United States, Cathleen P. Buchanan,

Lake Bluff, IL, United States, L. Komen, Lake Bluff, IL, United

States, Marina Becker, Lake Bluff, IL, United States

Objective: L-Carnosine is an amino acid dipeptide that may enhance

frontal lobe function. We therefore sought to investigate whether L-

Carnosine supplementation for children with Autistic Spectrum

Disorders (ASD) results in observable, objective changes in language

and/or behavior in contrast to placebo.

Design/Methods: Thirty-one children (21 M, mean age= 7.45; range =

3.2-12.5 yrs )meeting inclusion criteria were enrolled in an 8 week

blinded trial of either 400 mg BID powdered L-Carnosine or placebo.

Children were assessed at a pediatric neurology clinic with the

Childhood Autism Rating Scale (CARS), the Gilliam Autism Rating

Scale (GARS), the Expressive and Receptive One-Word Picture

Vocabulary tests (E/ROWPVT), and biweekly parental Clinical Global

Impression of Change (CGI), at baseline and 8 week endpoint.

Results: Children who were on placebo (n=17) did not show

statistically significant changes on any of the outcome measures.

After 8 weeks on L-Carnosine, children (n=14) showed statistically

significant improvements on the GARS total score, GARS Behavior,

Socialization, and Communication subscales, and the ROWPVT (all

p's<.05). EOWPVT and CARS showed trends in improvements, which were

supported by parental CGI.

Conclusions: Oral supplementation with L-Carnosine resulted in

demonstrable improvements in autistic behaviors as well as increases

in language comprehension that reached statistical significance.

Although the mechanism of action of the amino acid is not well

understood, it is believed that it acts to modulate neurotransmission

and affect metal ion transfer of zinc and copper in the entorhinal

cortex. This may enhance neurological function or act in a

neuroprotective fashion.

What is Carnosine?

The supplement that you are interested in learning more about

contains 200mg powdered carnosine, as well as powdered Vitamin E (25

IU) and powdered Zinc (2.5 mg). The exact doseage that is correct

for your child should be established by your doctor in coordination

with Dr. Chez, who pioneered the use of this supplement in

children with developmental delays.

L-carnosine, or " carnosine " is an amino acid dipeptide made up of

histidine and alanine. The naturally-occuring amino acid is found

within the human body, a by-product of proteins digested within the

body. The deep frontal part of the brain (entorhinal cortex) is

believed to be a site where carnosine tends to accumulate. It may

interact with zinc in that area, as well as having effects on GABA, a

brain neurotransmitter, which by a complex chemical reaction forms

homo-carnosine.

What Studies Have Been Done with Carnosine?

Rat and animal studies have been done with carnosine looking

at " neuroprotection. " These investigations aimed to examine

protective action since carnosine may be protective of muscle and

nerve function. There have been no studies that have shown any

evidence of toxicity or teratogenicity in animals where carnosine has

been studied. Few scientifically-validated human studies have been

conducted, however, and most of the information one finds about

carnosine's claims are of the quality found on the intenet. Claims

have been made for generic carnosine/carnosine formulations aiding in

combatting a range of maladies from Alzheimer's to body building.

Why Carnosine, then?

Recent MRI studies by Petroff and colleagues (2001) examining levels

of brain chemistry showed a relationship between homo-carnosine and

GABA in temporal lobe and generalized myoclonic epilepsies. These

authors described homo-carnosine levels that may correlate with

seizure control even when GABA response is defective in human

studies. Dr. Chez was intrigued by the results of this study, and

thus began a study in June, 2001 that aimed to test if supplementing

carnosine orally could enhance seizure protection in children who

were already on anticonvulsants and who had recurrent seizures

despite being on standard drug therapy. He hypothesized that the

addition of carnosine could decrease seizure frequency and so began

an open-label study of carnosine which he acquired via an industrial

chemical company.

The Open-Label Study

A total of 75 children, who had " failed " multiple antiepileptic

medications in an effort to stop their seizures (including steroids

and the Ketogenic diet) with histories of partial or generalized

epilepsy entered the open-label study. The majority had fronto-

temporal lobe seizures, or generalized epilepsy. Approximately 25%

had EEGs to directly compare before and after starting the

carnosine. Many patients had reductions in seizure frequency, but

without EEG correlation. Two sisters with hypsarrythmia/Lennox-

Gastaut variant both showed dramatic improvements in EEG amplitude,

spike frequency, and background activity. In three other patients

with primary or secondary generalized spike and wave patterns or

Lennox-Gastaut type patterns, EEG amplitude and spike frequency

improved with carnosine in dosages of 800-2,000 mg. per day. Dosage

was titrated upward depending upon bodyweight. No side effects were

reported.

Unexpectedly, parental diaries showed a pattern of comments related

to gains in cognitive domains including language, alertness, energy

levels, and even gross motor ability. Dr. Chez was motivated by such

reports in addition to comments from other professionals that worked

simultaneoulsy with the children (e.g., speech therapists) who,

unaware that children were on the new supplement, spontaneoulsy

stated that individual children were showing incremental gains not

previously seen. Expressive language was described as more fluent,

eye contact more frequent, and interest in the environment was more

prominent. Dr. Chez thought that this supplement could be of benefit

to children with autism or PDD and so began to give it to children

with such diagnoses in an open-label trial. Indeed, parents reported

benefits in their children after as few as 2 weeks, in the areas of

socialization, expressive language, alertness level, energy level,

adaptation to change, and curiously, gross motor planning.

The Double-Blind Study

Because of the remarkable cognitive improvements in language, speech

production and school performance as well as social alertness, Dr.

Chez felt it important to study the effect of the supplement in

children with Autistic Spectrum Disorders. Children were included in

this study if they had histories of abnormal EEG, and had previously

responded to cognitive-enhancing dementia medications (as part of a

controlled study at the office) or to anti-convulsants. A double-

blind placebo controlled study with carnosine was begun. Children

were randomly placed on either active carnosine or placebo.

Expressive and receptive language measures, two autism rating scales,

and parent rating analog scales were administered at the start and

completion of the study. Results of this study indicated clinically

meaningful changes in many aspects of autistic features, and also

showed that the carnosine supplement improved children's expressive

and receptive language significantly. This is the only dietary

supplement to date studied in a double-blind fashion in autism.

Who Benefits and What are the Side Effects?

The majority of children with either epilepsy or autism treated in

open label studies by Dr. Chez benefitted from carnosine

supplementation. Dr. Chez estimates that approximately 10% of

children who have been on the carnosine supplement have had reports

of no improvement. A very small percentage (less than 5% of children

with epilepsy or autistic spectrum disorders) have shown increased

physical hyperactivity or verbal hyperactivity, but we are unable to

ascertain if these reports are directly related to the carnosine

supplement. No sleep disturbances were reported as a result of

carnosine therapy even in dosages up to 3,000 mg. a day. No

abdominal side effects, skin rashes, or any changes in anticonvulsant

blood levels, liver functions or hematological studies. No patients

had any urinary changes or bowel habit changes from the carnosine.

Many children on the autistic spectrum were reported to increase

their range of food choices with an improved range of appetite.

Responses have been seen in generalized epilepsies, focal seizure

disorders, autism, PDD, and head injury to date. Because of its

effect on entorhinal cortex, improvements in Alzheimer's disease or

other frontal lobe encephalopathy may be possible. Any syndrome that

involves apraxia or expressive language delay may benefit from this.

Concurrent studies are currently being run or planned in areas of

attention disorder, Tourette's syndrome, and various learning

disability syndromes of the nonverbal type.

=====

[Guest guest]

Hi !

You have NO idea how happy I am to hear from you!!!! So I'm not the

only one -like I said I was a bit nervous because when Sallie Bernard

sent the first post about carnosine nobody commented on it -and then

I asked around and I couldn't find anyone that tried it.

I'm curious how the natural effects of carnosine a naturally-

occurring combination of the two amino acids alanine and histidine

relates to docosahexenoic acid (DHA) and eicosapentaenoic acid (EPA)

and gamma-linolenic acid. And I do believe that there may be at

least one researcher who is also curious, or at least that's what I'm

told.

So anyway -how did you learn about carnosine, and were you too at

first nervous to try it? I discussed it with Tanner's developmental

pediatrician Dr. Marilyn Agin - however whatever information she has

on it in relationship to being helpful to children with communication

disorders I sent to her. Did you purchase the carnosine from

http://www.carn-aware.com or elsewhere? I'm thinking of adding this

to the http://www.shop-in-service.com/efa_basics.htm resources page

of the CHERAB site -but I wanted to hear from others (and quite

honestly I was looking for a bit more than one!!)

Your child is probably able to swallow the capsules -but if not do

you also mix the powder with the water? You say you have seen marked

improvements in speech and language -and I discussed this with the

one doctor who worked on the study. Since we are seeing the same

results with Omega 3 and Omega 6 supplementation like ProEFA -how can

I tell if a surge if from one or the other? And will both together

be better or worse? So again I'm curious if the two together can be

a better mix? I personally am not willing to stop supplementation of

fish oil for Tanner again -and I know he wouldn't want that either.

(my kids ask for it -and as an adult if you take it you probably want

to take it for the same reason -you do notice it helps with memory,

and mood)

Speaking of which -do you know if adults take carnosine? Just

curious since many of the parents who have conditions that run in the

family that benefit from PUFA supplementation have children that

benefit too- conditions like heart disease, Crohn's disease,

rheumatoid arthritis, cancer, mental health, and of course the

dreaded eczema. I know I had a great memory before my first son was

born -and then not as good to " Oh no am I developing Alzheimer's or

what?! " after my first and then second was born -finding myself standing in a

room and forgetting why I went

in there. I started taking fish oil after I read Dr. Stoll's The

Omega 3 Connection book because my dad unfortunately died of a heart

attack when I was only 23, and my mom had open heart surgery -so as a

preventative. And guess what? I got my memory back!!! I wasn't

counting on it -but a great side effect. So I'm curious about carnosine for us

too -the parents.

=====

[Guest guest]

I was wondering if it was the same too because someone recommended I

give Kennedy Carnitine for energy.

Traci

> ,

>

> Is carnosine the same as carnitine??? I think this information is

very

> interesting, I am going to have my geneticist look into it for me

and

> hopefully contact Dr. Chez. Myra has problems with frontal lobe

seizures (I

> don't want to say epilepsy because there have only been two so

far), she's

> hypotonic and had delayed myelin. Last MRI showed age approriate

> myelination. She also has severe milk and dairy allergies. She

had one

> bottle of DHA Jr. and is almost finished with her first bottle of

ProEFA,

> but she still has the loose stools. The carnosine or is it

carnitine helps

> absorb EFA right. It also helps with muscle energy which would

help with

> the hypotonia. Plus is helps with weight gain, My' is 28 lbs and

30 " , not

> too bad since she is getting really good with her walking. I

posted earlier

> her imporvements in vocalization which are not quite as dramatic

as others

> experience but if she is still not absorbing as much as we giver

her then

> that could have something to do with the slower progress. And Dr.

Katz told

> me that it would take longer for us to see results with her

because of the

> delayed myelin. He suggested the DHA Jr. when we were interested

in aiding

> the myelination deficiency.

>

> Thanks for sharing your information, I am so impressed with your

dedication

> to helping your children and others.

>

> Deirdre

[Guest guest]

They are not the same, bu they are both amino acids.

Traci

> I was wondering if it was the same too because someone recommended

I

> give Kennedy Carnitine for energy.

>

> Traci

[Guest guest]

, we have been using the carnosine too, for about two years.

Generally, I give it to him two days on two days off, that seems

to work the best for us. It does make him more likely to be verbal.

It seems like he gets a big burst of language when I first start

him on it, then he will get quiet again, so I take him back off,

then when I put him back on there is another burst of language,

so I still haven't found the best way to give it to him, where

he keeps his language, but I am working at it.

Dr. Kane left a message to you also, below.

Best,

Dear

One of my patient's mother sent me a copy of an email you sent to the

Apraxia chat group that follows. We have been using Carnosine for

children with verbal apraxia, autism, PDD and seizure

disorders for 2 1/2 years. Originally I used it just with children

with autism and patients with MS and expanded from there

as we saw the results with the CNS. Carnosine has a direct

relationship to fatty acid metabolism and also interestingly acts as a

finite metal chelator on receptor sites. Presently I work at the

WellSpring clinic in Wayne, PA with Dr. where we have

started a clinical trial with fatty acids and children with verbal

apraxia, autism and PDD. Carnosine is part of the nutritional regime.

There are some remarkable medical studies on carnosine. It is good to

hear that Tanner is doing well. Perhaps you might consider adding

evening primrose oil to his regime as the carnosine stimulates

prostaglandin one synthesis- the substrate is GLA or primrose.

The dose of carnosine should be adjusted by a physician as we have

had some difficulties with children who received too low of a dose

of carnosine (it shunts back into histidine and causes acidosis).

Carnosine also chelates zinc just as it does heavy metals such as

mercury thus generous use of trace minerals should accompany the use

of carnosine. Dr. Kane