Carnosine, not Carnitine: First Fish, Now Red Meat and Chicken?!! From a posting to the CHERAB Grouplist, by Lisa Geng

I just received an email from Cathleen Buchanan, PhD, who is the
Research Coordinator to Dr. Michael Chez, Pediatric Neurologist. Dr. Chez has been very involved with research in autism and epilepsy,
aphasia and auto immunity. They are both "happy to learn of the interest" in our group -which has its focus on communication disorders like apraxia and "know that this holds much promise for your list-serve members....."

This is just the first week I've started giving Tanner the carnosine at 200 mg a day which is one capsule. Since then I've increased Tanner to 2 capsules a day (400 mg). I posted earlier how Glenn commented on how Tanner's speech improved; I just put Tanner on the phone with Jeannie and Tanner told her what he told me -that he went to the zoo on a bus and that him and his best friend Tyree were playing and had a little fight and that Tyree punched him in the stomach and then he punched Tyree in the stomach and then Tyree scratched his face but it doesn't really hurt and they are still friends. (!!!!)
Ok -not that I'm not upset that my five year old has a scratch on his cheek, and that they are punching each other in the stomach and he says nobody noticed, but that is overshadowed by...he was able to express all those complex thoughts without stopping and saying "I forget mommy" like he sometimes does if it's too much to say.

So I'm very excited about putting the carnosine together with the
ProEFA from just what I've seen so far even though it's probably too
soon to tell. I'm just wondering if I can go over to the local health food store and buy carnosine instead since the bottle I bought online at http://www.carn-aware.com only has 60 capsules in it at 200 mg each? Is there any difference -do we need to worry about purity like we do with fish oil?

I looked up carnosine online and there are some studies going on in
the UK with it for anti-aging, so I may want to try it too! Here is the link http://www.med4u.co.uk/BM_HT_completherpy_supp.htm and I
did read this same anti-aging info about it elsewhere too. I also
read at med4U "As mentioned earlier, this is a new supplement and our experience in using it is limited. However, we do not expect any side effects or dangerous long-term problems, as this is a naturally-
occurring product, found in our muscles and brain. If you do not like
taking tablets, you may want to get your extra supplies of carnosine from red meat or chicken."

Here is the info from my last post -including the info sent to me
from Dr. Chez again!:

".. 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."

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

Double-Blind, Placebo-Controlled Study of L-Carnosine Supplementation in Children with Autistic Spectrum Disorders.
Michael G. Chez, Lake Bluff, IL, United States, Cathleen P. Buchanan, Lake Bluff, IL, United States, Jamie 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. Michael 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.

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Two recommended sources for "pure Carnosine"

Carn-Aware The product that Dr. Chez used in the above studies. I called them and they were very helpful in answering my questions because when I first started Tanner I didn't know anyone else with an apraxic child using this. This is their temporary ordering site, upon publishing of the Carn-aware research -it says the new site should be ready.

Beyond a Century Another company recommended to me that sells pure carnosine. They were also very nice and helpful over the phone. Some buy from here because it's cheaper. I've tried both and for some reason I believe Tanner's had some regressions since I've switched him from Carn-Aware to this brand and I've had some experience in watching him over the years from trying various formula's of fish oils. I'll have to switch him back to Carn-Aware and back to this a few times over the next 3 to 4 months to know for sure. Let me know if you see any difference between the two brands!