I just received an email from Cathleen Buchanan PHD, 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 may be helping to answer our
questions here on the grouplist, and are "happy to learn of the
group, which has is focused on communication disorders like apraxia
and "know that this holds much promise for your list-serve
I believe so too! So all of you that are patients of Dr. Chez in our
group, please keep sharing with us since most of us are curious and
interested in hearing more...
Below is the clinical trial information and information about
carnosine from Dr. Chez -and part of my message from Tue May 14,
2002 9:51 pm -and 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) and this is
what happened just now I posted earlier how Glenn commented on how
Tanner's speech improved on my last post. I just put Tanner on the
phone with Jeannie Buesser who runs the Apraxia group of North Jersey
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 from obvious 2 finger marks from another child who is his
friend, and that they are punching each other in the stomach and he says
nobody noticed (they went to the Turtle Back Zoo today) 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 (where did we hear that before?) 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
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 (and so I may want to try it too) Not
sure how reputable and about others and don't have much time to look
into it today -so here is the link http://www.med4u.co.uk/BM_HT_completherpy_supp.htm
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
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!:
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
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
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
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.
may interact with zinc in that area, as well as having effects on GABA,
a brain neurotransmitter, which by a complex chemical reaction forms
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
The Open-Label Study
A total of 75 children, who had "failed" multiple
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
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.
President CHERAB Foundation
Communication Help, Education, Research, Apraxia Base
"Help give our cherubs a smile and a voice"
Two recommended to me resources 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
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! -Lisa