Dysarthria question

[Guest guest]

I just found out one of the side effects of my 4 year old son's

medication is dysarthia. Now I wonder how much of his problem is

apraxia vs a medication side effect. I have a call into his SLP to get

her opinion. has been on Depakote for 2.5 years, so he wasn't

even speaking before using the medication.

Has anyone had any experience with dysarthria? Is it easy to

distinguish from apraxia?

Thanks,

[Guest guest]

My son has dysarthria in addition to apraxia and hypotonia in his

tongue (and arms and legs).

My understanding is that the apraxia makes it difficult for his brain

to tell his mouth muscles to move.

The dysarthria makes his speech sound slurred or unclear much like

elderly stroke victims.

>

> I just found out one of the side effects of my 4 year old son's

> medication is dysarthia. Now I wonder how much of his problem is

> apraxia vs a medication side effect. I have a call into his SLP to

get

> her opinion. has been on Depakote for 2.5 years, so he wasn't

> even speaking before using the medication.

>

> Has anyone had any experience with dysarthria? Is it easy to

> distinguish from apraxia?

>

> Thanks,

>

>

[Guest guest]

I did find online where it says that Depakote is a possible side

effect of that drug

" Nervous System

Agitation, catatonic reaction, dysarthria, hallucinations,

hypokinesia, psychosis, reflexes increased, sleep disorder, tardive

dyskinesia. "

http://www.drugs.com/sfx/depakote-side-effects.html

Any side effect should be reported immediately to your child's

doctor. I wouldn't call the SLP to ask her (unless your SLP is the

one that put your child on the Depakote) - I'd call the doctor and

tell him that you want to stop (or change if you have to) the

medication due to this side effect. Research the other medication

prior to starting. Why is your child on this drug? How old is your

child?

Dysarthria is a speech disorder that is due to weakness or

incoordination of the muscles used for speech. The errors from a

child with dysarthria are consistent and the speech therapy would

involve some sort of strengthening. Apraxia is a motor planning

disorder and the errors are traditionally (without fish oils)

inconsistent.

It's not unusual for dysarthria and apraxia to be misdiagnosed,

confused, or co-exist in the same child as it says here:

Some speech disorders can overlap, or be misdiagnosed. For

example, " Verbal apraxia, a disorder of central nervous system (CNS)

processing, and dysarthria, a disorder of output, are commonly

confused " , says Dr. , chief of child development at the

Chicago College of Medicine. " Experts are able to differentiate

between these two disorders by listening carefully to a child's

speech and by identifying certain physical clues " , says Dr. ,

but adds, " These disorders are poorly understood by physicians and by

a lot of speech therapists as well. " It is possible for phonological

disorders, apraxia and dysarthria to all occur together in the same

child. Speech Language Impairments, which is connected to language

based learning difficulties may also be present. And the severity of

each may vary.

http://www.cherab.org/information/latetalkerhandout.html

Dysarthria vs. Apraxia: A Comparison

http://www.csuchico.edu/~pmccaffrey/syllabi/SPPA342/342unit15.html

What is dysarthria?

http://www.speech-express.com/diagnosis-

destinations/dysarthria/dysarthria.html

=====

[Guest guest]

Unfortunately, side effects are a fact of life with seizure

medications. We have tried numerous medications and almost all had

bad side effects for . Brain surgery combined with Depakote were

the only things that stopped the seizures. Depakote's side effects

have been MUCH better than any of the other medications, but now that

it may be hindering his speech, I'm trying to find out if there is

anything we haven't tried that may have acceptable side effects.

I want my SLP's input to see how much of the issue is dysarthria vs

apraxia. If she thinks it's all apraxia, I don't think we should

change medications. Apraxia is a very common diagnosis with my son's

particular seizure condition, so I don't think we would be out of the

woods by changing medications.

His seizure condition has devasting effects on development, so

seizure control is more important than clear speaking at this point:-(

-- In , " kiddietalk "

<kiddietalk@...> wrote:

>

> I did find online where it says that Depakote is a possible side

> effect of that drug

> " Nervous System

> Agitation, catatonic reaction, dysarthria, hallucinations,

> hypokinesia, psychosis, reflexes increased, sleep disorder, tardive

> dyskinesia. "

>

> http://www.drugs.com/sfx/depakote-side-effects.html

>

> Any side effect should be reported immediately to your child's

> doctor. I wouldn't call the SLP to ask her (unless your SLP is the

> one that put your child on the Depakote) - I'd call the doctor and

> tell him that you want to stop (or change if you have to) the

> medication due to this side effect. Research the other medication

> prior to starting. Why is your child on this drug? How old is

your

> child?

>

> Dysarthria is a speech disorder that is due to weakness or

> incoordination of the muscles used for speech. The errors from a

> child with dysarthria are consistent and the speech therapy would

> involve some sort of strengthening. Apraxia is a motor planning

> disorder and the errors are traditionally (without fish oils)

> inconsistent.

>

>

> It's not unusual for dysarthria and apraxia to be misdiagnosed,

> confused, or co-exist in the same child as it says here:

>

> Some speech disorders can overlap, or be misdiagnosed. For

> example, " Verbal apraxia, a disorder of central nervous system

(CNS)

> processing, and dysarthria, a disorder of output, are commonly

> confused " , says Dr. , chief of child development at

the

> Chicago College of Medicine. " Experts are able to differentiate

> between these two disorders by listening carefully to a child's

> speech and by identifying certain physical clues " , says Dr. ,

> but adds, " These disorders are poorly understood by physicians and

by

> a lot of speech therapists as well. " It is possible for

phonological

> disorders, apraxia and dysarthria to all occur together in the same

> child. Speech Language Impairments, which is connected to language

> based learning difficulties may also be present. And the severity

of

> each may vary.

> http://www.cherab.org/information/latetalkerhandout.html

>

> Dysarthria vs. Apraxia: A Comparison

> http://www.csuchico.edu/~pmccaffrey/syllabi/SPPA342/342unit15.html

>

> What is dysarthria?

> http://www.speech-express.com/diagnosis-

> destinations/dysarthria/dysarthria.html

>

>

> =====

>

[Guest guest]

We were given two exercises:

One: press down on tounge with spoon

Two: Press down on tongue with electric tooth brush

Still, we saw improvements immediately by changing toothpaste:) Go

figure

[Guest guest]

I would just want to know more about the why of this particular side

effect and be sure his liver is OK.

[Guest guest]

If there's a way to help reduce seizures in children without the side

effects of those antiepileptic drugs of course that would be the

best... I know! What about a lollipop?!

Hot off the presses:

Placebos Work Better on Kids, Study Suggests

While the science behind the placebo effect is still unclear, a new

study may have found a group for whom it's especially effective:

children.

Kids' tendency to be more open to the power of suggestion than adults

appears to spill over into medicine. French pediatricians reviewing

data from many different studies of children and adults receiving

either anti-epilepsy medication or a sugar pill found that while

children actually responded worse to the drugs than adults, they

responded 50 percent better to a placebo, with one in five of the

kids seeing a serious reduction in their seizure rates.

At this point, the researchers don't want to get ahead of themselves;

they say the study really affirms something they already knew, that

children respond differently to drugs than adults do. As a result,

more research should be done strictly on the effect of

pharmaceuticals on kids, rather than just assuming they'll react to a

drug the same way adults do.

But the French researchers' findings might get to the heart of the

placebo effect—believing a drug will help you probably increases the

chances that it will help you. After all, children are more likely

than adults to believe that something handed to them by an authority

figure in a white coat is going to make them feel better. So perhaps

they are the ideal placebo patients.

http://blogs.discovermagazine.com/discoblog/2008/08/13/placebos-work-better-on-k\

ids-study-suggests/

" Greater Response To Placebo In Children Than In Adults

ScienceDaily (Aug. 12, 2008) — In a systematic review of

antiepileptic drugs, Philippe Ryvlin (of the Hospices Civils de Lyon,

France) and colleagues show that children with drug-resistant partial

epilepsy enrolled in trials seem to have a greater response to

placebo than adults enrolled in such trials

This finding is an important factor to consider when designing drug

trials to be carried out in children with epilepsy.

These findings are discussed by Terry Klassen, from the University of

Alberta, and his colleagues – who were not involved in the research.

Klassen and colleagues comment on the " relatively weak evidence base

informing medical care in children compared with adults " .

They argue that there is a pressing need for more clinical trials

research in children, but caution that such studies must be carefully

designed "

http://www.sciencedaily.com/releases/2008/08/080811215907.htm

One of the little girls in Tanner's school has severe seizures -it's

so sad as her parents had done everything -but when we met last year

for the first time they had never heard of Dr. Chez who's

done so much for children with seizures. At least this is where he

started -I don't know about now as it appears his direction has

shifted more towards autism? He's the pediatric neurologist who

created carn-aware to try to help patients with seizure disorders.

Don't know if you ever considered a trip to see him- but just in case

below is his contact info as well as info on carn-aware.

G. Chez, M.D., Director of Pediatric Neurology, has almost 20

years' experience in epilepsy research and treatment, epilepsy

surgery monitoring, and the innovative use of drug and immunological

therapies for refractory autism. Dr. Chez received his medical degree

from the Indiana University School of Medicine and served his

internship and residency in Pediatrics at s Hopkins Hospital. He

performed his fellowship in Pediatric Neurology at Children's

Memorial Hospital in Chicago and the Cleveland Clinic Foundation in

Cleveland, and subsequently received his fellowship training in

epilepsy at Rush Presbyterian-St. Luke's Medical Center in Chicago.

Dr. Chez has been certified by the American Board of Pediatrics, and

the American Board of Psychiatry and Neurology, with special

competence in Child Neurology. Dr. Chez is the author of numerous

articles and an upcoming book entitled, " The Medical Management of

Autism: A Guide for Parents and Professionals. To learn more about

Dr. Chez or to make an appointment please call (916) 454-6667.

http://checksutterfirst.org/neuro/pediatric/aboutus.html

Carn-aware epilepsy study

L-Carnosine Therapy For Intractable Epilepsy

In Childhood: Effect On EEG

----------------------------------------------------------------------

----------

G. Chez, M.D., Cathleen P. Buchanan, Ph.D., L. Komen,

M.A.

----------------------------------------------------------------------

----------

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

indirectly affect the electrochemical process in the brain. MRI

spectroscopy has recently demonstrated that brain homocarnosine

levels may correlate with seizure control. Due to these findings, we

decided to examine whether ingesting dietary carnosine would decrease

spike and wave activity and improve seizure control both clinically

(overt seizures) and physiologically (EEG) by raising homocarnosine

levels in the brain.

Design/Methods: Seven children (3 female, 4 male; age range 2-12

years) meeting inclusion criteria were enrolled in a 10 week study,

beginning with a baseline EEG reading. Participants were then

administered 400mg BID of powdered L-Carnosine for the 10 week time

period and a final EEG was subsequently read by Dr. Chez.

Results: After 10 weeks of Carnosine therapy, 5 of the 7

participants documented improved EEG findings and all 7 children

exhibited improvement in seizure frequency. While not formally

evaluated, improvement in the domains of global cognition, behavior

and language function was reported in all 7 participants. While

these domains were not predicted to be affected by the L-Carnosine

supplementation, they were elicited spontaneously via blinded

therapists and family members.

Conclusions: L-Carnosine may be a useful add-on medication for

intractable seizure disorders. Although, the exact mechanism is

unknown, L-Carnosine is believed to bind with GABA to form

homocarnosine in the brain and may also modulate copper and zinc

influx into the neurons decreasing the after-discharges and spike-

wave discharges associated with many seizure disorders. This may

decrease the frequency of clinical seizures and, in some cases,

improve EEG patterns.

Citation of Published Abstract: Chez, G., Buchanan, Cathleen

P., and Komen. L-Carnosine Therapy for Intractable Epilepsy

in Childhood: Effect on EEG. Epilepsia 2002; 43(7): 65.

http://www.carn-aware.com/cgi-local/SoftCart.15.exe/online-store/scstore/Epileps\

y.html?L+scstore+ltkz3567ff978797+1229164402

Page 2

Is there clinical data indicating that Carn-Aware is effective?Double-

blind and Open-label studies have reported improvements in the

following areas:Auditory processingSocializationSpeech production

Fine motor skillsLanguage skills EEG reportsSeizure frequency

How can CARN-AWARE help with epilepsy?The exact mechanism is unknown,

but in open label studies and clinical experiences, CARN-AWARE has

improved some EEG abnormalities and frequency of myoclonic and

generalized seizures. CARN-AWARE has also helped cognitive

development in severe epileptics even when EEG or seizure frequency

was unchanged. Remember that CARN-AWARE is only a dietary supplement

and not a drug used to treat epilepsy.

http://www.carn-aware.com/about.pdf

Introduction: 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 dosage that is correct for

your child should be established by your doctor. L-carnosine,

or " carnosine, " is an amino acid dipeptide made up of histidine and

alanine. The naturally-occurring 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 " neuro protection. " These investigations aimed to examine

protective action since carnosine may be protective of muscle and

nerve function. To our knowledge 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

internet. Claims have been made for generic carnosine/carnosine

formulations aiding in combating 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, images/but without

EEG correlation. Two sisters with hypsarrythmia/Lennox-Gastault

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-

Gastault 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

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

unaware that children were taking the new supplement, spontaneously

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 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.

Click HERE for Study of Intractable Epilepsy

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 benefited from carnosine

supplementation. Dr. Chez estimates that approximately 10% of

children who have been taking 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, images/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.

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.

http://www.carn-aware.com/

=====

[Guest guest]

We do periodic blood tests for liver function. So far so good. The

biggest risk is for kids under 2 years old.

>

> I would just want to know more about the why of this particular side

> effect and be sure his liver is OK.

>

[Guest guest]

I have used Dr. Chez's Carnaware, but didn't notice any benefits.

Dr. Chez is not considered an expert in my son's condition. In fact,

I read an article about one of his patients and some of his quotes

lead me to believe he is not very knowledgable about this rare

disorder. The guru is located in MI. I traveled to see him and

ultimately had my son's surgery there.

If only a placebo would work. Somehow, infants and toddlers don't

quite get the concept;-)

>

> If there's a way to help reduce seizures in children without the

side

> effects of those antiepileptic drugs of course that would be the

> best... I know! What about a lollipop?!

>

> Hot off the presses:

>

>

> Placebos Work Better on Kids, Study Suggests

>

> While the science behind the placebo effect is still unclear, a new

> study may have found a group for whom it's especially effective:

> children.

>

> Kids' tendency to be more open to the power of suggestion than

adults

> appears to spill over into medicine. French pediatricians reviewing

> data from many different studies of children and adults receiving

> either anti-epilepsy medication or a sugar pill found that while

> children actually responded worse to the drugs than adults, they

> responded 50 percent better to a placebo, with one in five of the

> kids seeing a serious reduction in their seizure rates.

>

> At this point, the researchers don't want to get ahead of

themselves;

> they say the study really affirms something they already knew, that

> children respond differently to drugs than adults do. As a result,

> more research should be done strictly on the effect of

> pharmaceuticals on kids, rather than just assuming they'll react to

a

> drug the same way adults do.

>

> But the French researchers' findings might get to the heart of the

> placebo effect—believing a drug will help you probably increases the

> chances that it will help you. After all, children are more likely

> than adults to believe that something handed to them by an authority

> figure in a white coat is going to make them feel better. So perhaps

> they are the ideal placebo patients.

> http://blogs.discovermagazine.com/discoblog/2008/08/13/placebos-

work-better-on-kids-study-suggests/

>

> " Greater Response To Placebo In Children Than In Adults

> ScienceDaily (Aug. 12, 2008) — In a systematic review of

> antiepileptic drugs, Philippe Ryvlin (of the Hospices Civils de

Lyon,

> France) and colleagues show that children with drug-resistant

partial

> epilepsy enrolled in trials seem to have a greater response to

> placebo than adults enrolled in such trials

>

> This finding is an important factor to consider when designing drug

> trials to be carried out in children with epilepsy.

>

> These findings are discussed by Terry Klassen, from the University

of

> Alberta, and his colleagues – who were not involved in the research.

> Klassen and colleagues comment on the " relatively weak evidence base

> informing medical care in children compared with adults " .

>

> They argue that there is a pressing need for more clinical trials

> research in children, but caution that such studies must be

carefully

> designed "

> http://www.sciencedaily.com/releases/2008/08/080811215907.htm

>

> One of the little girls in Tanner's school has severe seizures -it's

> so sad as her parents had done everything -but when we met last year

> for the first time they had never heard of Dr. Chez who's

> done so much for children with seizures. At least this is where he

> started -I don't know about now as it appears his direction has

> shifted more towards autism? He's the pediatric neurologist who

> created carn-aware to try to help patients with seizure disorders.

> Don't know if you ever considered a trip to see him- but just in

case

> below is his contact info as well as info on carn-aware.

>

> G. Chez, M.D., Director of Pediatric Neurology, has almost

20

> years' experience in epilepsy research and treatment, epilepsy

> surgery monitoring, and the innovative use of drug and immunological

> therapies for refractory autism. Dr. Chez received his medical

degree

> from the Indiana University School of Medicine and served his

> internship and residency in Pediatrics at s Hopkins Hospital. He

> performed his fellowship in Pediatric Neurology at Children's

> Memorial Hospital in Chicago and the Cleveland Clinic Foundation in

> Cleveland, and subsequently received his fellowship training in

> epilepsy at Rush Presbyterian-St. Luke's Medical Center in Chicago.

> Dr. Chez has been certified by the American Board of Pediatrics, and

> the American Board of Psychiatry and Neurology, with special

> competence in Child Neurology. Dr. Chez is the author of numerous

> articles and an upcoming book entitled, " The Medical Management of

> Autism: A Guide for Parents and Professionals. To learn more about

> Dr. Chez or to make an appointment please call (916) 454-6667.

> http://checksutterfirst.org/neuro/pediatric/aboutus.html

>

>

> Carn-aware epilepsy study

> L-Carnosine Therapy For Intractable Epilepsy

> In Childhood: Effect On EEG

>

>

>

> --------------------------------------------------------------------

--

> ----------

>

> G. Chez, M.D., Cathleen P. Buchanan, Ph.D., L. Komen,

> M.A.

>

>

>

> --------------------------------------------------------------------

--

> ----------

>

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

> indirectly affect the electrochemical process in the brain. MRI

> spectroscopy has recently demonstrated that brain homocarnosine

> levels may correlate with seizure control. Due to these findings,

we

> decided to examine whether ingesting dietary carnosine would

decrease

> spike and wave activity and improve seizure control both clinically

> (overt seizures) and physiologically (EEG) by raising homocarnosine

> levels in the brain.

>

> Design/Methods: Seven children (3 female, 4 male; age range 2-12

> years) meeting inclusion criteria were enrolled in a 10 week study,

> beginning with a baseline EEG reading. Participants were then

> administered 400mg BID of powdered L-Carnosine for the 10 week time

> period and a final EEG was subsequently read by Dr. Chez.

>

> Results: After 10 weeks of Carnosine therapy, 5 of the 7

> participants documented improved EEG findings and all 7 children

> exhibited improvement in seizure frequency. While not formally

> evaluated, improvement in the domains of global cognition, behavior

> and language function was reported in all 7 participants. While

> these domains were not predicted to be affected by the L-Carnosine

> supplementation, they were elicited spontaneously via blinded

> therapists and family members.

>

> Conclusions: L-Carnosine may be a useful add-on medication for

> intractable seizure disorders. Although, the exact mechanism is

> unknown, L-Carnosine is believed to bind with GABA to form

> homocarnosine in the brain and may also modulate copper and zinc

> influx into the neurons decreasing the after-discharges and spike-

> wave discharges associated with many seizure disorders. This may

> decrease the frequency of clinical seizures and, in some cases,

> improve EEG patterns.

>

> Citation of Published Abstract: Chez, G., Buchanan,

Cathleen

> P., and Komen. L-Carnosine Therapy for Intractable Epilepsy

> in Childhood: Effect on EEG. Epilepsia 2002; 43(7): 65.

>

>

> http://www.carn-aware.com/cgi-local/SoftCart.15.exe/online-

store/scstore/Epilepsy.html?L+scstore+ltkz3567ff978797+1229164402

>

> Page 2

> Is there clinical data indicating that Carn-Aware is effective?

Double-

> blind and Open-label studies have reported improvements in the

> following areas:Auditory processingSocializationSpeech production

> Fine motor skillsLanguage skills EEG reportsSeizure frequency

>

> How can CARN-AWARE help with epilepsy?The exact mechanism is

unknown,

> but in open label studies and clinical experiences, CARN-AWARE has

> improved some EEG abnormalities and frequency of myoclonic and

> generalized seizures. CARN-AWARE has also helped cognitive

> development in severe epileptics even when EEG or seizure frequency

> was unchanged. Remember that CARN-AWARE is only a dietary supplement

> and not a drug used to treat epilepsy.

> http://www.carn-aware.com/about.pdf

>

> Introduction: 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 dosage that is correct for

> your child should be established by your doctor. L-carnosine,

> or " carnosine, " is an amino acid dipeptide made up of histidine and

> alanine. The naturally-occurring 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 " neuro protection. " These investigations aimed to examine

> protective action since carnosine may be protective of muscle and

> nerve function. To our knowledge 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

> internet. Claims have been made for generic carnosine/carnosine

> formulations aiding in combating 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, images/but

without

> EEG correlation. Two sisters with hypsarrythmia/Lennox-Gastault

> 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-

> Gastault 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

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

> unaware that children were taking the new supplement, spontaneously

> 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 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.

>

> Click HERE for Study of Intractable Epilepsy

> 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 benefited from carnosine

> supplementation. Dr. Chez estimates that approximately 10% of

> children who have been taking 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, images/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.

> 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.

> http://www.carn-aware.com/

>

> =====

>

[Guest guest]

Have you tried he ketogenic diet, modified atkins, or low glycedmic

diet?

Cheryl

>

> I just found out one of the side effects of my 4 year old son's

> medication is dysarthia. Now I wonder how much of his problem is

> apraxia vs a medication side effect. I have a call into his SLP to

get

> her opinion. has been on Depakote for 2.5 years, so he wasn't

> even speaking before using the medication.

>

> Has anyone had any experience with dysarthria? Is it easy to

> distinguish from apraxia?

>

> Thanks,

>

>