Re: Dr. Chez CBS2 Chicago Carnosine/how labels hurt

[Guest guest]

Funny this would come up now right after our recent discussion.

Even though the lines between autism and apraxia overlap -they are

clearly not the same thing. When a child has autism why is sensory

integration dysfunction for example pointed out while apraxia almost

never is? Why do even those that know about apraxia continue to

ignore mentioning it if they are interviwed for any articles?

Apraxia again is far more widespread than autism because it's found

in many children that have austism -however it's also found in other

disorders and syndromes and it also stands alone.

How to present something that can help those children with

communication impairments is a conversation that I had with Dr. Andy

Bondy a few months back.

Dr. Bondy invented PECS http://www.pecs.com -specifically for autistic children

(and now " related developmental disabilities " too!). I told

him that as a toy inventor for companies in the mainstream like

Mattel or Hasbro, it was drilled into me to broaden the customer

base as wide as possible. I also told him that in working as an art

director -there are certain ways of presenting the same thing that

will attract or repel people -depending on how it's put. Why limit to autism

when PECS is beneficial for any late talker -

no matter whether they have a delay or impairment or disorder of

speech and/or language? Because the PECS website and focus was

pointed mainly to autism -you could auto lose almost all of the parents of

late talkers not diagnosed with autism who looked at the way PECS was presented

and thought " that's

not for my child -he's not autistic -he's just a late talker "

This is where labels can hurt our children. My son Tanner is now

mild apraxic, has mild low tone and mild sensory integration

problems. Even though never diagnosed as such -he may at times have appeared to

have had PDD or mild autism

at two or three when his oral and verbal apraxia were severe and he

had virtually no facial expressions and was withdrawing due to

frustrations from his inability to communicate -however today and

for awhile now- he clearly is not a child anyone would diagnose as

autistic. Yet I gave Tanner carn-aware and then carnosine fairly

recently and it helped him. Tanner I might add also does not

have " Alzheimer's, an illness similar to autism " (you'll pick up on

that joke later) All of us that know Tanner witnessed an increase

in imaginative speech within a week of adding carn-aware/carnosine -

again fairly recently. Tanner never had a great imagination before -

or perhaps he just didn't share it before -adding carnosine appears

to have opened that up in him -and now he shares it all the time.

Sad thing is that if I read this article -and I wasn't knowledgeable

to know that articles that are written for one condition could help

others too -however only the condition with money behind them to

support research are mentioned -I would not have tried the

carnosine that helped my apraxic son Tanner so much. (I might add

that I have not seen any change in Tanner's older brother Dakota who

was also a late talker -still has some almost undetectable facial

weakness from facial palsy due to birth trauma -and has been

diagnosed numerous times with ADD or APD. Dakota has only shown

amazing changes on EFAs, is excelling in school now -and has never

been put on drugs)

Why didn't they write this article as open as they wrote the trial

results which embraces all the children -not just autistic

children? Or did Dr. Chez not mention any child other than autistic

even though that was not even the original population of children

this started with. (didn't this start with those children with

severe seizure disorders -many of whom lose language from the

seizures?) All I can say is -yes autism and apraxia can overlap -and

also yes they can both stand alone -and also yes this may help

children that are undiagnosed late talkers too -so why limit it to

just a new treatment for autism? Autism is not apraxia, and autism

therapies are not all the best for children with apraxia or other types of late

talkers -and so

each diagnosis should be recognized and have it's own voice -or we

are not giving our children the opportunity to have their own

voice.

Even if they don't want to say apraxia - why not just leave it open

by just tweaking this article (words in the ( ) are my words)to now

say:

" Carnosine may help patients with Alzheimer's, an illness similar

to autism and it has already helped some Alzheimer patients.

Carnosine also (may benefit children with " any syndrome that

involves apraxia or expressive language delay " ) Dr. Chez

said, " We've had parents report improved reading skills with dyslexic

tendencies...just improved test scores with kids who've had

borderline attention disorder. "

In the original paper published on carnosine by Dr. Chez -it says

that " Any syndrome that involves apraxia or expressive language

delay may benefit from this. " and it also concludes in a broader

sense " 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. "

Now POOF! Carnosine is suddenly only a dietary treatment just autism...oh,

forgot -

and perhaps " Alzheimer's, an illness similar to autism "

You know Inside Edition told me when they did our segment on apraxia

(which they still have our http://www.apraxia.cc link up on their

site) that awareness will not really come for apraxia until a

celebrity's child is diagnosed with it -and " that's just the way it

is " . Seems sad to believe that to be the truth. Is that really

when people will care about our children?!!

What's even sadder is that the people that read or wrote

this " Autism Breakthrough " article that are related to children that

are late talkers -or who have speech problems -will not have a clue

that carnosine could also help give a voice to the child they care

about.

Here again is the original paper on this:

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]

Hey ,

I just read in your message that you are/were a toy inventor.

I have an idea for a toy for our apraxic children.

My daughter loves to sing, but most music tapes are too fast. I know that

there is one CD that is slow, but I would like to have a device that takes a

CD and the child/parent could control how fast the song is sung. The

parent/child could also increase the speed of the song as they become more

proficient. I'm a software engineer, and I'm sure the technology is there

to make a device like this. The only thing is finding someone to produce

such a device.

I've thought of this in the past, but it really hit me yesterday. I was

helping out in my girls kindegarten yesterday for the first time. They sang

a song (Them Bones). was trying to sing, but it was wayyyyyy too fast

for her. If I could get the CD and slow it done, I know she could sing it.

just stood there and didn't even attempt to sing it. probably

could because her speech problems are not as severe as 's, but is

scared of failing and won't attempt things that she thinks she will fail at.

Anyway, I just thought you might have some ideas on this.

Thanks,

Suzi

[ ] Re: Dr. Chez CBS2 Chicago Carnosine/how

labels hurt

> Funny this would come up now right after our recent discussion.

>

> Even though the lines between autism and apraxia overlap -they are

> clearly not the same thing. When a child has autism why is sensory

> integration dysfunction for example pointed out while apraxia almost

> never is? Why do even those that know about apraxia continue to

> ignore mentioning it if they are interviwed for any articles?

> Apraxia again is far more widespread than autism because it's found

> in many children that have austism -however it's also found in other

> disorders and syndromes and it also stands alone.

>

>

[Guest guest]

AMEN LISA! Thanks for this rebuttal. Just as an FYI: when I read the

link attached to the e-mail originally sent out...it has the same text....I

wrote to this Dr. MIchael Breen because it gave us that option to ask him

direct questions, so I did!

I asked specifically if in his opinion, children with apraxia who have no

PDD symptoms could benefit from this also....as well as any expressive

language delay?

I will share his response as soon as I receive it....hopefully it won't

take long, but I am not holding my breath. If I do not receive a response

within a certain reasonable amount of time, I will try again.

Thanks again and how appropriate! Kim

>Even though the lines between autism and apraxia overlap -they are

>clearly not the same thing.  When a child has autism why is sensory

>integration dysfunction for example pointed out while apraxia almost

>never is?  Why do even those that know about apraxia continue to

>ignore mentioning it if they are interviwed for any articles?

>Apraxia again is far more widespread than autism because it's found

>in many children that have austism -however it's also found in other

..disorders and syndromes and it also stands alone.