Re: Landau-Kleffner Syndrome

[Guest guest]

What are they suggesting to do to help your child? Some of this

syndrome sounds like AP but I am not sure if the same therapies may

promote siezure. Anyone know?

>

> Our daughter was just diagnosed with Landau-Kleffner Syndrome at the

Mayo Clinic. Is there anyone on this list who's child has this

disorder? We were always told she had global apraxia.

>

> Hope to hear from someone soon.

>

> Thanks,

>

> Pam Aslagson

>

[Guest guest]

It is also one of the MANY childhood neruodegenerative diseases where a

child loses skills, has common autistic behaviours and is also

associated with calcium dysregulation. Children will benefit from

calcium channel blocking drugs and calcium antagonists. Why on earth

would they no just tell the mother to cut out the pasteurized milk which

puts too much unabsorbable calcium into the body. I know two kids that

have seen improvement in seizure activity with the use of the calcium

channel blockers, steriods and some other meds which are prescribed to

normalize the brain activity. Out of the two one recovered language.

This was the one that stopped consuming caclium in dairy or less

bioavailable forms. These kids actually test deficient in calcium

depsite most of them consume more than enough milk.

The absorbtion of the calcium is an issue. Getting the gut in better

condition and giving more bioavailable forms of calcium from fruits and

vegetables and some meat is best. Cows still grow after infancy even

though they no longer consume milk from their mothers. The vegetation

provides enough calcium.

Calcium supplements are usually troublesome because the source is not

bioavailable or easy to digest. A natural calcium channel blocker that

helps is magnesium. Epsom salt baths are an excellent way to get the

magnesium in the body. Vitamin A D K2 are also helpful. The omega 3s

should help too.

I would like to say that raw milk would help but I would wait until you

are able to measure calcium levels regularly to make sure the calcium in

the raw milk is being absorbed.

If my child had this disease, I would definitely consider the vitamink

group for support too.

Personally, I would take my child off all sources of milk calcium or

fortified foods. (cerals, rice milk, supplements)

A DAN doctor I know has a few patients with this condition and has

success in treating them. Once the calcium issues are resolved the

language returns and matures and the epileptic seizures are controlled

without medication the child is considered recovered.

ilizzy03 wrote:

> What are they suggesting to do to help your child? Some of this

> syndrome sounds like AP but I am not sure if the same therapies may

> promote siezure. Anyone know?

>

>

>

>> Our daughter was just diagnosed with Landau-Kleffner Syndrome at the

>>

> Mayo Clinic. Is there anyone on this list who's child has this

> disorder? We were always told she had global apraxia.

>

>> Hope to hear from someone soon.

>>

>> Thanks,

>>

>> Pam Aslagson

>>

>>

>

>

>

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

>

>

[Guest guest]

I'm not sure if you know any children with severe seizure

issues, but the parents I know have tried everything and so far

nothing has worked at all. There is one girl in Tanner's school who

is now in a wheelchair more often than she wants to be because she

has fallen so many times during seizures it's starting to affect her

body and her face. She's a beautiful girl -all American looking like

she was just picked out of a Teen magazine -but she's banged her

face, nose, head, arms, legs, shoulders -you name it. You don't

know when a seizure is going to happen that's the problem.

Her mother and father have flown her to experts and will travel

anywhere. Her mother told me " I don't sleep. " " I'm up all hours of

the night researching for something to help her on the internet " .

She is a member here since I told her about this group but so far

nothing stated has helped in any way -seizure diets -milk

elimination, carn-aware included. It's easy for some experts to come

up with theories but this poor child is living with seizures and so

far nobody can help -and none of the methods that have worked for

many such as Dr. Chez and carn-aware have worked for her either.

In addition since milk elimination didn't work they make sure she

drinks her milk daily. They can't take the chance that her bones

will be weak as again she falls far too often and it's bad enough

even with her drinking milk. (and she has doctors that oversee her)

Why the fear about calcium from some here? Is there a rise in

children with parathyroid tumors?!

" it is extremely rare for people to have high calcium levels in their

blood... and not have a parathyroid tumor "

http://parathyroid.com/diagnosis.htm

I'll never forget the first time I saw her have a seizure -as I

posted after it happened here in the archives she was all dressed up

with a pretty bow in her hair -and when she fell backwards she

cracked her head on the floor. Her mother and father after it was

over were stroking her hair smooth while the other was wiping her

tears from her eyes and straightening out the collar of her dress.

It was tragic. If only it were so easy to just stop drinking milk.

In her case that would literally be like thinking Batman was the Dark

Night or something.

Here's more on your autism theory (even though Landau Kleffner

Syndrome isn't autism either it appears more and more want to treat

every condition as it was for some silly reason)

Community Care Behavioral Health Organization January 2008 All Rights

Reserved 225

III. INTEGRATIVE/COMPLEMENTARY AND ALTERNATIVE MEDICINE (CAM)

THERAPIES FOR CHILDREN WITH AUTISM

Recent literature review suggests that 30%-50% of children with

Autism in the United States

are using some form of Complementary and Alternative Medicine (CAM)

(Levy & Hyman, 2003;

Nickel, 1996).

c. Gluten and Casein Diets in Autism

There has been an increased interest in the elimination of gluten

(wheat products) and casein

(milk products) from the diet of children with Autism. A recent

survey suggests that up to

15% of children with Autism adhere to these dietary restrictions. The

gluten-free casein-free

(GF/CF) diet is based on an " opioid excess " theory. In the 1970's,

high levels of urinary opioid

peptides among patients with Autism was demonstrated (Reichelt et

al., 1991; Shattock et al.,

1990). The source of the excess opioids is thought to be from dietary

gluten and casein intake

absorbed through an inflamed GI tract. Both gluten and casein are

broken down in the GI

tract as " opioid peptides, " that are rapidly absorbed into the

bloodstream. Theoretically, if the

GI tract is inflamed, opioid metabolites could be absorbed. Children

with Autism may be

Community Care Behavioral Health Organization January 2008 All Rights

Reserved 226

vulnerable to increased absorption of opioid peptides, because many

have evidence of

increased gastrointestinal permeability ( " leaky gut syndrome " )

(D'Eufemia et al., 1996) due to

gut inflammation, specifically " ileal lymphoid nodular hyperplasia "

and colitis (Wakefield, et

al., 1998).

The impact of excess opioid peptides in the urine on the development

of autistic symptoms is

unknown. Researchers who demonstrated excess opioid peptide in urine

of these children

have hypothesized that children with Autism behave in a manner

consistent with " opioid

intoxication, " including social withdrawal, sluggishness, lack of

attention to surroundings and

cognitive slowing. One study demonstrated that compliance with a

gluten-free casein-free

diet actually reduced level of urinary opioid peptides among children

with celiac disease

(Stensrud & Reichelt, 1999). However, this has not been investigated

among children with

Autism and researchers did not attempt to link a decrease in opioid

peptides among autistic or

celiac patients to behavioral or developmental changes.

There is some preliminary data to suggest that elimination of gluten

and casein from the diet

of children with Autism may reduce symptoms. Lucarelli et al. (1995)

first published a study

in 1995 suggesting the potential efficacy of milk elimination diet in

treating autistic symptoms.

This group was studying the possible link between allergy and Autism

and found that 36

children with Autism who eliminated milk products from the diet for

eight weeks had

significantly fewer autistic behaviors in 5 of 7 categories on a

standardized observational

assessment of autistic symptoms. This study had significant

limitations, however, including

lack of an autistic control group, non-blinded treatment, failure to

control for other

psychosocial interventions, e.g., behavior therapy, and lack of

information regarding the use

of other medications. Similarly, Knivesberg et al. (2002) conducted a

small, randomized,

single-blind clinical trial of gluten and casein elimination among 10

school-aged children with

Autism. The diet intervention group showed significant improvement in

attention, social and

emotional functioning, as well as communication and cognition. This

study was limited by a

small sample size and the fact that it did not control for other

interventions such as use of

medications or behavior therapy. Critics of the study suggest that

the increased attention and

household structure needed to comply with the diet, combined with the

use of more traditional

therapies such as behavior modification, were not accounted for in

the study and could have

been responsible for the positive results.

Data assessing the safety and efficacy of the GF/CF diet in treating

autistic symptoms is

limited. Since the initial report by Lucarelli, one single-blind

controlled trial of the gluten-free

casein-free diet has been conducted among older school aged children.

Whiteley et al. (1999)

reported preliminary findings of some benefit of a gluten-free diet.

Kidd (2002) summarized

integrative treatment approaches in Autism and reported benefits in

dietary restrictions

(Bradstreet & Karzinel, 2002). However, to date there have been no

published (in refereed

journals) double-blind, placebo-controlled trials to demonstrate the

effectiveness of this diet in

young children with Autism. Additionally, a literature search found

no published studies

assessing the safety of this diet. This is of concern since many

children with Autism already

have limited diets based on their sensory aversion to certain types

and textures of foods.

Elimination of milk products potentially runs the risk of inadequate

intake of protein, calcium

and other essential vitamins in the diet.

Reviews of many integrative biological treatments are found in Kidd

(2002), a book by Shaw

(2002), and in DAN! Protocols and Annual Meeting Abstracts (Autism

Research Institute,

Bernard Rimland, Ph.D.). These are not necessarily unbiased reviews

of methodology, design,

assessments, outcomes analysis, etc. There are some profound comments

in the Esch and

Carr (2004) review on secretin which apply to the broader search

for " promising but often

unproven treatments in Autism, " and the following:

" We must act responsibly to help parents and others evaluate the

strengths and impact of yet

unproven treatments. Above all, we must strive to advocate for

rigorous scientific

investigations that will define the therapeutic benefit of such

treatments before anecdotal

surrogates of those investigations wreak emotional and financial

havoc on the lives of those

we endeavor to help. "

http://www.ccbh.com/pdfs/Providers/healthchoices/manual/ProviderManual.pdf

=====

[Guest guest]

> Why the fear about calcium from some here? Is there a rise in

> children with parathyroid tumors?!

> " it is extremely rare for people to have high calcium levels in their

> blood... and not have a parathyroid tumor "

> http://parathyroid.com/diagnosis.htm

Eliminating milk won't help with hyperparathyroidism either;-) The bad

parathyroid has to be removed. The calcium intake has nothing to do

with the calcium level. I've had the surgery, so if anyone has an

interest in the topic, I'll be glad to answer your questions:-)

[Guest guest]

Trust me, severe seizures hit VERY close to home.

Often times when milk is eliminated from the diet, the child is

supplemented with calcium and not with other nutrients that are needed

to support calcium. (magnesium, vitamin A D K2, etc)

Parents need to be aware that sometimes the problem lies directly with

the calcium absorbtion. Milk will affect calcium absorbtion and my

mother has been told by her diabetic clinic that if she consumes dairy

that she greatly increases her risk of osteoparosis. The phosphorus

levels in the milk are too high relative to the amount of calcium. When

ingested, the phosphorus will pull calcium from the bones to balance the

ratio. Other studies prove that the high levels in protein will prevent

the calcium from being used properly.

My mother in law, a pharmasist, recently attended seminars about

altzheimers. They were discussing using calcium antagonists or channel

blockers to treat it and also new drugs that will help regulate calcium

in the body. The million dollar question is, Why is calcium such a

problem?

Also , there are advanced neurobiological sciences with focus on

the study of calcium channels that will support this. If you would like

to learn more about it here is an excellent link

http://www.snutchlab.msl.ubc.ca/

, we have spent nearly $50 000 dollars in the last year and a half

to help our sons. We saw and consulted with some of the best doctors

and neurologists. One doctor, an MD who spends his time researching the

childhood epidemics on his own and with other interested parties helped

our sons. All it took ultimately was calcium regulation and

supplementing. Milk elimination and careful regulation of all other

calcium sources we critical. We even got it out of our water with a

reverse osmosis. There are some excellent labs in the files of the

vitamink group that will help determine the calcium status of your

child. Tamaro is excellent and will help parents interpret

the labs and guide parents with answers to questions. We had to get

calcium regulated. This didn't just come with the elimination of milk

and unabsorble forms of calcium. This came with getting rid of what was

causing my kids bodies not to be able to self regulate calcium and other

things in their body.

Autism is NOT a disease, it is a symptom of an underlying disorder.

Apraxia is not a disease, it is a symtom of an underlying issue or

disorder. The huge classifiaction of Autism or PDD is there because

only a few syndromes are known genetically to display autistic

behaviours if untreated. If you research many syndromes that have

Autism comorbidity, you will see a calcium dysregulation connection. If

there is no known syndrome to explain the autism, then the child is

simply labeled Autistic. It is very wrong and is a dead end street for

finding a true medical reason for the condition.

I am only putting out there what has enlightened us and healed our

sons. If your child was a sick as mine were, you want to hear everyones

experience because maybe, just maybe, it may ring true as something you

may consider for your child.

kiddietalk wrote:

> I'm not sure if you know any children with severe seizure

> issues, but the parents I know have tried everything and so far

> nothing has worked at all. There is one girl in Tanner's school who

> is now in a wheelchair more often than she wants to be because she

> has fallen so many times during seizures it's starting to affect her

> body and her face. She's a beautiful girl -all American looking like

> she was just picked out of a Teen magazine -but she's banged her

> face, nose, head, arms, legs, shoulders -you name it. You don't

> know when a seizure is going to happen that's the problem.

>

> Her mother and father have flown her to experts and will travel

> anywhere. Her mother told me " I don't sleep. " " I'm up all hours of

> the night researching for something to help her on the internet " .

> She is a member here since I told her about this group but so far

> nothing stated has helped in any way -seizure diets -milk

> elimination, carn-aware included. It's easy for some experts to come

> up with theories but this poor child is living with seizures and so

> far nobody can help -and none of the methods that have worked for

> many such as Dr. Chez and carn-aware have worked for her either.

>

> In addition since milk elimination didn't work they make sure she

> drinks her milk daily. They can't take the chance that her bones

> will be weak as again she falls far too often and it's bad enough

> even with her drinking milk. (and she has doctors that oversee her)

> Why the fear about calcium from some here? Is there a rise in

> children with parathyroid tumors?!

> " it is extremely rare for people to have high calcium levels in their

> blood... and not have a parathyroid tumor "

> http://parathyroid.com/diagnosis.htm

>

> I'll never forget the first time I saw her have a seizure -as I

> posted after it happened here in the archives she was all dressed up

> with a pretty bow in her hair -and when she fell backwards she

> cracked her head on the floor. Her mother and father after it was

> over were stroking her hair smooth while the other was wiping her

> tears from her eyes and straightening out the collar of her dress.

> It was tragic. If only it were so easy to just stop drinking milk.

> In her case that would literally be like thinking Batman was the Dark

> Night or something.

>

> Here's more on your autism theory (even though Landau Kleffner

> Syndrome isn't autism either it appears more and more want to treat

> every condition as it was for some silly reason)

>

> Community Care Behavioral Health Organization January 2008 All Rights

> Reserved 225

>

> III. INTEGRATIVE/COMPLEMENTARY AND ALTERNATIVE MEDICINE (CAM)

>

> THERAPIES FOR CHILDREN WITH AUTISM

>

> Recent literature review suggests that 30%-50% of children with

> Autism in the United States

>

> are using some form of Complementary and Alternative Medicine (CAM)

> (Levy & Hyman, 2003;

>

> Nickel, 1996).

>

> c. Gluten and Casein Diets in Autism

>

> There has been an increased interest in the elimination of gluten

> (wheat products) and casein

>

> (milk products) from the diet of children with Autism. A recent

> survey suggests that up to

>

> 15% of children with Autism adhere to these dietary restrictions. The

> gluten-free casein-free

>

> (GF/CF) diet is based on an " opioid excess " theory. In the 1970's,

> high levels of urinary opioid

>

> peptides among patients with Autism was demonstrated (Reichelt et

> al., 1991; Shattock et al.,

>

> 1990). The source of the excess opioids is thought to be from dietary

> gluten and casein intake

>

> absorbed through an inflamed GI tract. Both gluten and casein are

> broken down in the GI

>

> tract as " opioid peptides, " that are rapidly absorbed into the

> bloodstream. Theoretically, if the

>

> GI tract is inflamed, opioid metabolites could be absorbed. Children

> with Autism may be

>

> Community Care Behavioral Health Organization January 2008 All Rights

> Reserved 226

>

> vulnerable to increased absorption of opioid peptides, because many

> have evidence of

>

> increased gastrointestinal permeability ( " leaky gut syndrome " )

> (D'Eufemia et al., 1996) due to

>

> gut inflammation, specifically " ileal lymphoid nodular hyperplasia "

> and colitis (Wakefield, et

>

> al., 1998).

>

> The impact of excess opioid peptides in the urine on the development

> of autistic symptoms is

>

> unknown. Researchers who demonstrated excess opioid peptide in urine

> of these children

>

> have hypothesized that children with Autism behave in a manner

> consistent with " opioid

>

> intoxication, " including social withdrawal, sluggishness, lack of

> attention to surroundings and

>

> cognitive slowing. One study demonstrated that compliance with a

> gluten-free casein-free

>

> diet actually reduced level of urinary opioid peptides among children

> with celiac disease

>

> (Stensrud & Reichelt, 1999). However, this has not been investigated

> among children with

>

> Autism and researchers did not attempt to link a decrease in opioid

> peptides among autistic or

>

> celiac patients to behavioral or developmental changes.

>

> There is some preliminary data to suggest that elimination of gluten

> and casein from the diet

>

> of children with Autism may reduce symptoms. Lucarelli et al. (1995)

> first published a study

>

> in 1995 suggesting the potential efficacy of milk elimination diet in

> treating autistic symptoms.

>

> This group was studying the possible link between allergy and Autism

> and found that 36

>

> children with Autism who eliminated milk products from the diet for

> eight weeks had

>

> significantly fewer autistic behaviors in 5 of 7 categories on a

> standardized observational

>

> assessment of autistic symptoms. This study had significant

> limitations, however, including

>

> lack of an autistic control group, non-blinded treatment, failure to

> control for other

>

> psychosocial interventions, e.g., behavior therapy, and lack of

> information regarding the use

>

> of other medications. Similarly, Knivesberg et al. (2002) conducted a

> small, randomized,

>

> single-blind clinical trial of gluten and casein elimination among 10

> school-aged children with

>

> Autism. The diet intervention group showed significant improvement in

> attention, social and

>

> emotional functioning, as well as communication and cognition. This

> study was limited by a

>

> small sample size and the fact that it did not control for other

> interventions such as use of

>

> medications or behavior therapy. Critics of the study suggest that

> the increased attention and

>

> household structure needed to comply with the diet, combined with the

> use of more traditional

>

> therapies such as behavior modification, were not accounted for in

> the study and could have

>

> been responsible for the positive results.

>

> Data assessing the safety and efficacy of the GF/CF diet in treating

> autistic symptoms is

>

> limited. Since the initial report by Lucarelli, one single-blind

> controlled trial of the gluten-free

>

> casein-free diet has been conducted among older school aged children.

> Whiteley et al. (1999)

>

> reported preliminary findings of some benefit of a gluten-free diet.

> Kidd (2002) summarized

>

> integrative treatment approaches in Autism and reported benefits in

> dietary restrictions

>

> (Bradstreet & Karzinel, 2002). However, to date there have been no

> published (in refereed

>

> journals) double-blind, placebo-controlled trials to demonstrate the

> effectiveness of this diet in

>

> young children with Autism. Additionally, a literature search found

> no published studies

>

> assessing the safety of this diet. This is of concern since many

> children with Autism already

>

> have limited diets based on their sensory aversion to certain types

> and textures of foods.

>

> Elimination of milk products potentially runs the risk of inadequate

> intake of protein, calcium

>

> and other essential vitamins in the diet.

>

> Reviews of many integrative biological treatments are found in Kidd

> (2002), a book by Shaw

>

> (2002), and in DAN! Protocols and Annual Meeting Abstracts (Autism

> Research Institute,

>

> Bernard Rimland, Ph.D.). These are not necessarily unbiased reviews

> of methodology, design,

>

> assessments, outcomes analysis, etc. There are some profound comments

> in the Esch and

>

> Carr (2004) review on secretin which apply to the broader search

> for " promising but often

>

> unproven treatments in Autism, " and the following:

>

> " We must act responsibly to help parents and others evaluate the

> strengths and impact of yet

>

> unproven treatments. Above all, we must strive to advocate for

> rigorous scientific

>

> investigations that will define the therapeutic benefit of such

> treatments before anecdotal

>

> surrogates of those investigations wreak emotional and financial

> havoc on the lives of those

>

> we endeavor to help. "

> http://www.ccbh.com/pdfs/Providers/healthchoices/manual/ProviderManual.pdf

>

> =====

>