I need Info

[Guest guest]

<PRE>Use protective measures. No one is sure anymore these days. Betty

[Guest guest]

Here's my boilerplate on chelation:

Dear Friend:

I'm so happy that you're exploring this treatment for your child.

Autism is an epidemic, and epidemics have a single, simple cause:

mosquitos and malaria, asbestos and lung disease, cigarettes and

cancer, lead and lowered IQ, mercury and autism.

The growing clincial evidence is that autism and its related disorders

(ADD, ADHD, speech delay, tics, and other neurological disorders)

often result from a toxic event to genetically susceptible children.

Chelation is a way of treating heavy metal poisoning. The CDC sets

levels for poisoning for different metals. If you have your child's

metal load tested (blood, urine, hair), and if those levels exceed the

CDC limits, the CDC recommends chelation as the standard treatment.

The package warning label for Thimerosal, a mercury-based preservative

prevalent in childhood vaccines until 2003 (and still in flu, tetanus,

DtP and menigitis vaccines) states that in the case of overexposure,

chelation therapy should be used.

With ASD children (Austism Spectrum Disorders), chelation should also

be a part of an overall plan of treatment conducted by a physician who

has experience in diagnosing and treating all of the various ailments

that heavy metal poisoning can cause.

I would not do this on my child unless under a trained and experienced

doctor's supervision.

Treatment begins with a patient history followed by lab tests by a

qualified doctor to determine what's going on inside your child in key

areas. To implement this approach, it's recommended that you consult a

DAN! affiliated physician or another physician who treats autism

bio-medically. There's a list of DAN! (Defeat Autism Now!) doctors,

listed at http://www.autismwebsite.com/ari-lists/danus.html. DAN! The

doctor will coordinate and interpret a series of tests that will

likely include:

* CDSA: Complete Diagnostic Stool Analysis that measures

digestion/absorption, gut immunology, gut metabolism and gut microbiology

* Urine Toxic Metals Test (following a chelation challenge) for

potentially toxic metals such as aluminum, antimony, arsenic,

beryllium, bismuth, cadmium, lead, mercury, nickel, platinum,

thallium, thorium, tin, tungsten, uranium. Depending on the child's

ability/inability to detoxify and upon the exposure, the child could

have toxic levels of one or more of these.

* RBCE: Red Blood Cell Elements for calcium, magnesium, potassium,

phosphorus, copper, zinc, iron, manganese, chromium, selenium, boron,

vanadium and molybdenum. These essential elements are often blocked

from uptake by disturbances caused by heavy metal toxicity.

* Microbial OATS Panel, which checks for yeast and bacterial byproducts

For a small subset of children, even so-called " normal " exposures to

toxins can cause serious disturbances in a child's digestive,

immunologic, and neurologic systems. If you have a child on the autism

spectrum and have not have that child evaluated for toxicity and an

impaired ability to detoxify via sulphur-bearing amino acids, we urge

you to seek such testing from a qualified physician.

The physcian will use the results of these tests to help deterimne

your child's functioning in regards to:

1. Gut Biosis/Diet. Most autistic children (70 to 80%) have gut and

bowel problems, especially yeast overgrowth and the presence of more

" bad guys " in their bellies than beneficial bacteria. The GFCF diet is

important here (http://www.gfcfdiet.com), and the underlying issue of

gut bacteria also needs to be addressed and cured. Most doctors

treating autsim bio-medically recommend that the gut be successfully

treated before going too heavily into the next phase.

2. Heavy Metal Load. These are inorganic metals that, literally,

poison the body: lead, mercury, cadmium and others. These autistic

children have a reduced ability to chelate metals (lots of studies on

that). If a child's metal burden is in the toxic range, the child

needs to be chelated. Because of the metal tests, most children end up

with diagnostic codes like: " 270.4 – Disturbances of Sulphur-Bearning

Amino-Acid " and " 985.0 – Toxic Effect of Mercury and Its Compounds. "

With diagnoses like these, many insurances will pay for the child's

treatment, including chelation.

3. Vitamins and Minerals. Again, autistic children will tend to be low

in essential vitamins and minerals, especially calcium, zinc,

magnesium, B12 and so on. These have to be replaced in the child's

body on an ongoing basis with supplements.

Many children take a cabinet full of supplements every day. Our son

takes methyl B-12 transdermal rub, TMG with folinic acid, fatty acid

supplement, probiotics (to promote good bacteria growth in the gut),

twice-daily multi-vitamins, Lubriflex, taurine, Cal-Mag-K, Coenzyme,

selenium, transdermal zinc, transdermal n-acetylcysteine, transdermal

methycobalamin.

Without bio-medical testing, you may be flying blind a little when it

comes to these treatments, diet, supplements and so forth.

Does Chelation Really Work?

Many parents report dramatic and almost immediate improvements with

chelating agents like DMSA and DMPS. Here are a few things we've

learned along the way:

1. Conduct chelation under the watchful eye of a qualified physician.

We know parents whose children have to be off and on chelation due to

other issues.

2. Make sure that your child's gut system has been repaired (if

needed) and that he/she is receiving all the supplements necessary for

good health. Since chelation depletes some minerals such as zinc and

magnesium, their re-supplementation is important on the

" non-chelation " days.

3. The immediate results you may see will likely be the result of

relieving oxidative stress rather than the actual removal of mercury,

which takes months or, in the case of lead, years. But the wait is

worth it--children are being taken off the spectrum and many today

have this hope for their child, too.

4. DMSA vs.DMPS. Both of these chelating agents seem to be working

well. DMSA is FDA approved (although chelation of children is an off-

label use of it, as is the prescription of psychotropics such as Paxil

and Prozac to juveniles). The FDA approval does give DMSA an NDC

number. Again, if your child's labs came back showing toxic levels of

mercury and lead, your insurance may pay for DMSA. If you are having

to pay out of pocket, DMSA is about 3-4 times cheaper than DMPS.

Most physcians are no longer using the oral chelating agent to avoid

stomach irritation and are instead using cream rubs.

Is Chelation Safe?

You'll likely hear some concern about the risks of chelation. When

done properly, chelation is safer than many medical treatments for

autistic children. Here's the fact: If your child eats paint chips

containing lead, you would take him to the emergency room and guess

what they would do immediately? Chelate him with one of the four-five

chelating agents. Chelation has been used for over 50 years to treat

metal toxicity.

In the FDA's Federal Register addressing the approval of DMPS as a

bulk compounding agent, they note, " DMPS has been used to treat heavy

metal poisoning. At doses reported in the literature for this

indication, DMPS appears to be relatively nontoxic, and serious

adverse reactions associated with its use have not been commonly

reported. "

Chelation therapy has been proven in hundreds of thousands of clinical

examples to effectively remove toxic metals from people's bodies.

According to the CDC, over 60,000 Americans used some form of

chelation therapy in the past year. Many major health insurers have

policies endorsing chelation therapy as the appropriate therapy to

address heavy metal toxicity. (See the policies of: Aetna, Blue Cross,

and CIGNA as three examples.)

Because our son was tested for heavy metals and received a diagnosis

of lead and mercury toxicity, our Blue Cross insurance pays for his

chelation treatments.

Until you hook up with a good doctor, there are many ways to detoxify

naturally that will bring your child's toxic load down in advance of

further treatment and chelation.

a. Epsom Salt Baths. These baths provide magnesium, a critical mineral

that is depleted by mercury. Magnesium is calming to the overall

system and supports the body's own detoxification system. These baths

can be given every day or every other day. Add 2-3 cups of Epsom Salts

(purchased in any drug store) to a warm bath and have your child bathe

for a minimum of 15 minutes.

We saw an immediate jump in our son's language and behavior when we

began these baths. But after a few months they seemed to have done all

their work. Our son kept his gains.

b. Lipoceutical Glutathione. Glutathione is the body's most potent and

important anti-oxidant and is also depleted by mercury. Lipoceutical

Glutathione is a liquid form that is well absorbed by the body. You

can purchase Lipoceutical Glutathione over-the-counter from Wellness

Pharmacy: 1-800-227-2627. Dosing instructions are included with the

bottle.

Like many parents, we saw immediate improvement after introducing

Lipoceutical Glutathione. Please note that the product is best given

by itself in a small amount of fruit juice or water.

c. Over-the-counter natural chelators. There are several natural

detoxifiers sold over-the-counter that include chlorella and/or other

natural products (e.g., garlic, cilantro, various herbs) that have the

ability to chelate or detoxify metals from the body. Two of these

products include: NDF Plus, for more information contact

http://www.healthydetox.com and to order product go to

http://www.bioray2000.com. PCA-Rx, for more information contact

http://www.maxamlabs.com.

Some parents are using these products exclusively and are seeing

improvements. They are effective at bringing the toxic load down, but

they do not have as much history, wide usage, or research as

prescription chelators.

On the web, there are chelation discussion boards:

ChelatingKids2/

Here is a link to a list of parents who have chelated and what results

and concerns they had: http://home.earthlink.net/~moriam/LOVE_LETTERS.html

DAN! (Defeat Autism Now!) maintains a web page that provides an

overview of chelation: http://www.danasview.net/chelate.htm

Here are some well-known doctors and their results using chelation to

treat this illness:

1. Jane El-Dahr, M.D., Professor of Pediatric Immunology, Allergy and

Rheumatology, Tulane Medical School

" Very positive results in terms of clinical improvement, with no

adverse events, in over 100 children with autism treated with DMSA. "

Dr. El-Dahr received her undergraduate degree from Harvard University

and her M.D. from Jefferson Medical College in Philadelphia.

Following an internship in Pediatrics at Yale-New Haven Hospital she

did a Residency in Pediatrics and a Fellowship in Allergy/Immunology

at the University of Virginia Health Sciences Center. She is currently

an Associate Professor of Pediatrics, a Clinical Associate. Professor

of Medicine and Head of Pediatric Allergy/Immunology/Rheumatology at

Tulane University Medical Center in New Orleans. Dr. El-Dahr is a

parent of a child with ASD and treats Autistic Spectrum Disorders in

her practice.

2. Sid Baker, M.D. – Chairman Emeritus, Pediatrics, Yale University,

over 100 patients;

" No child developed a major adverse effect. "

" 50-75% experienced improvement that could be reasonably attributed to

treatment. "

3. Neubrander, M.D. – over 100 patients

" no significant side effects or significantly atypical laboratory

studies were ever found. "

" 25-30% of my children improved to some degree, and it was not

uncommon for some children to have remarkable success, unparalleled by

anything else they had ever done. " http://www.drneubrander.com

4. Berger, M.D. – over 500 patients, private practice, Tampa, Fla.

" I have never seen a serious side effect from DMSA "

" About 1/3 of the families report that their children seem to improve

with each cycle of DMSA. About 1/3 report that there is a general

improvement noted over the time that the child is using DMSA. About

1/3 of the families report no improvement in symptoms. "

5. Cave, M.D., FAAFP, private practice, Baton Rouge, La. –

over 2700 patients;

" DMSA is one of the safest drugs that I have used to date. "

" DMSA treatment has been the pivotal point in the treatment for many

children in the autism spectrum. "

" Until I treated them with DMSA, I did not see the level of

improvement that I am now seeing. "

" I have seen children progress from no speech or eye contact to full

dialogue – mainstreamed in school within eight months. "

6. Philip C. DeMio, M.D. - over 2,000 patients

" We have treatments right now that work for our kids today. We can't

hold back the chance of recovery while the clock is ticking, because

opposing powers want to mull it over for decades. "

http://www.drdemio.com

7. Jeff Bradstreet, M.D., FAAFP - over 3,000 patients

" heavy metals are neurotoxic and immunotoxic. They also disrupt a wide

array of activity within the body's biochemistry, as is apparent in

the inability to digest bread and milk proteins, or the ability to

defend against heavy metals. The wound becomes self-perpetuating apart

from intervention. "

http://www.icdrc.org

8. Amy Holmes, M.D. – private practice, over 800 patients

" DMSA is an excellent chelator of most heavy metals including mercury.

When used appropriately, it is safe and effective. DMSA has survived

the testing necessary for FDA approval for use in children. This means

it has been tested in children and was found to be both safe and

effective. "

http://www.healing-arts.org/children/holmes.htm#wethink

> i need as much CHELATION V Meds info as you people can stuff my in box

> with i am in the middle of a fight on another bord because i took up

> for this poor woman whos child died so HELP

[Guest guest]

My sons speech therapist that hes been working with thinks my son may

have apraxia, Do you think If I were to take him to a neurologist

they'll be able to diagnose him?

[Guest guest]

I agree with Elena that not all medical doctors that work in

pediatrics are fully aware of the various types of communication

impairments in pediatrics today -however there are reasons to see a

pediatric neurologist or developmental pediatrician outside of the

speech aspect. Apraxia appears to present today as a multifaceted

neurologically based communication impairment which is why you want

someone who can confirm or rule out soft signs, hard signs, genetic

syndromes, seizures or any other reasons for the delay/s. Of course

you can seek out those pediatric neuroMDs who do have experience in

diagnosis of various types of communication impairments including but

not limited to autism. You can interview on the phone -seek out

referrals from other parents at in person support groups or here. You

can interview on the phone -seek out referrals from other parents at

in person support groups or here.

Reasons to see a neurologist

Adapted from Clinical Practice Guidelines Communication Disorders III

22-25

In addition, the policy statement from the neurology journal

Neurology, (August, 2000), states that Absolute Indications for

Immediate Evaluation include,

· No babbling or pointing or other gestures by twelve months · No

single words by sixteen months · No two-word spontaneous phrases by

twenty-four months · Any loss of any language or social skills at any

age.

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

I also want to point out that it's best to seek a second opinion from

another SLP who is considered to be at least an area expert on

apraxia who comes highly recommended by parents of apraxic children.

Below are links to the cover article from Contemporary Pediatrics

which is the trade magazine to pediatric medical professionals

nationwide. You can print that out and bring that along with a copy

of The Late Talker.

There's much in The Late Talker as to why to see a

neurodevelopmental medical doctor since my one co author is a

neurodevelopmental medical doctor but below is a clip from the

archives as to why to take your child to a pediatric neurologist or

developmental pediatrician if apraxia is suspected:

~~~~~~~~~~~start of archive

On the other hand- most of us are dealing with more than verbal

apraxia.we just don't know that when our child is 2 -and we learn

through professionals and observations as they continue to grow and

more and more is expected of them. This is also why it's important

to take your child for a neurodevelopmental medical exam when your

child is suspected of apraxia to confirm or rule out other diagnosis

such as sensory integration dysfunction etc. The earlier you know -

the sooner to start appropriate therapies to get them up to speed by

kindergarten.

Don't let it overwhelm you -perhaps we aren't meant to know more

than what we have to know at each stage. We'll be here to help along

the way. It's OK to have any type of emotion when we find out our

child has more than a simple delay -or " more " than " just " verbal

apraxia. And it's OK to be completely overwhelmed and saddened to

find out your child has apraxia. And as I was one of those parents

it's never " just " apraxia when you find out!!!

It's OK to be upset " just " because your child is a " late talker " too!

Below is a new member archived message to hopefully answer more of

your questions for now (did you read The Late Talker yet?) For updated

information on fish oils and vitamin E and more - please visit the

links section here

/links

What type of apraxic like speech behaviors are you seeing that makes

you and the SLP suspect your child has apraxia vs. a simple delay in

speech? Is your child talking at all yet? At your child's age -

without speech, it's difficult to diagnose verbal apraxia -they

could " suspect " verbal apraxia and begin treatment just in case,

which wouldn't hurt your child if he ended up just having a simple

delay. Just a few questions before we could provide more accurate

answers:

Does your child have signs of oral apraxia? (for example, can he on

command smile, imitate funny faces, blow bubbles...if you put peanut

butter anywhere around his mouth can he lick it off no matter where

it is?)

http://www.cherab.org/information/speechlanguage/oralapraxia.html

Does your child have any neurological " soft signs " such as hypotonia

or sensory integration dysfunction?

http://www.cherab.org/information/speechlanguage/parentfriendlysoftsigns.html

Who else evaluated your child? Was it only the SLP through your

town school or was he also in Early Intervention through the state?

(birth to three) Was he evaluated by both a speech pathologist as

well as an occupational therapist? Was/were they knowledgeable

about apraxia? (If your child wasn't diagnosed by an occupational

therapist as well and professionals suspect apraxia -I highly

recommend you request that too either through both the school as

well as private through insurance for many reasons)

To answer any questions you may have about taking your child to see a

neurodevelopmental MD if he has not yet been to one and apraxia is

suspected... in one word - " Yes!!! " I would have your child diagnosed

(private) by a neurodevelopmental medical doctor (developmental

pediatrician or pediatric neurologist) who is knowledgeable about

apraxia and other neurologically based multi-faceted communication

impairments for numerous reasons. Reasons include (but not limited

to)

*having a " hero " on the outside of the school who can assist in a

therapeutic plan and oversee your child's development over the years

*advocacy support with the insurance company

* ruling out or confirming any neurological soft signs or any other

reasons for the delay in speech

*help those that ask " why isn't he talking yet " understand this is a

medical condition -and has nothing to do with your child's cognitive

ability. (if in your child's case it doesn't. Apraxia in itself

does not affect a child's cognitive ability -and speaking early or

late is no indication of a child's intelligence. Also contrary to

popular belief -most who have speech impairments have average to

above average intelligence)

Here's an article written by Neurodevelopmental Pediatrician Dr.

Marilyn Agin that was featured as a cover article in Contemporary

Pediatrics -a trade magazine for hundreds of thousands of pediatric

medical professionals across the US. (I wrote the parent guide)

" The " late talker " -when silence isn't golden

Not all children with delayed speech are " little Einsteins " or garden

variety " late bloomers. " Some have a speech-language disorder that

will persist unless warning signs are recognized and intervention

comes early. Includes a Guide for Parents. "

Podcast interview with Dr. Marilyn Agin from Contemporary Pediatrics

http://contemporarypediatrics.modernmedicine.com/radio_peds4

Actual article (where you can read it for free)

http://drgreene.mediwire.com/main/Default.aspx?P=Content & ArticleID=132720

or

http://opsc.mediwire.com/main/Default.aspx?P=Content & ArticleID=132720

My parent guide still works (for free)

http://www.contemporarypediatrics.com/contpeds/data/articlestandard/contpeds/492\

\

004/136315/article.pdf

I would also have at least one private " out of pocket " (if possible)

exam with a knowledgeable speech pathologist as well. This SLP can

coordinate with your child's MD, and school therapist and other

professionals, and again be there to assist in a therapeutic plan,

help set goals and oversee your child's development over the years

if needed.

=====

[Guest guest]

,

This part: Most pediatric neurologists just don't know speech,

I still grapple with. I really thought my son would be OK because

neurology cleared him, despite laryngomalacia, significant hypotonia

and the rest but said " I do not know what to tell you about the

speech. " It comes from the brain for goodness sakes!

Liz

>

> I agree with Elena that not all medical doctors that work in

> pediatrics are fully aware of the various types of communication

> impairments in pediatrics today -however there are reasons to see a

> pediatric neurologist or developmental pediatrician outside of the

> speech aspect. Apraxia appears to present today as a multifaceted

> neurologically based communication impairment which is why you want

> someone who can confirm or rule out soft signs, hard signs, genetic

> syndromes, seizures or any other reasons for the delay/s. Of course

> you can seek out those pediatric neuroMDs who do have experience in

> diagnosis of various types of communication impairments including but

> not limited to autism. You can interview on the phone -seek out

> referrals from other parents at in person support groups or here. You

> can interview on the phone -seek out referrals from other parents at

> in person support groups or here.

>

> Reasons to see a neurologist

> Adapted from Clinical Practice Guidelines Communication Disorders III

> 22-25

> In addition, the policy statement from the neurology journal

> Neurology, (August, 2000), states that Absolute Indications for

> Immediate Evaluation include,

> · No babbling or pointing or other gestures by twelve months · No

> single words by sixteen months · No two-word spontaneous phrases by

> twenty-four months · Any loss of any language or social skills at any

> age.

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

>

> I also want to point out that it's best to seek a second opinion from

> another SLP who is considered to be at least an area expert on

> apraxia who comes highly recommended by parents of apraxic children.

>

> Below are links to the cover article from Contemporary Pediatrics

> which is the trade magazine to pediatric medical professionals

> nationwide. You can print that out and bring that along with a copy

> of The Late Talker.

>

> There's much in The Late Talker as to why to see a

> neurodevelopmental medical doctor since my one co author is a

> neurodevelopmental medical doctor but below is a clip from the

> archives as to why to take your child to a pediatric neurologist or

> developmental pediatrician if apraxia is suspected:

>

> ~~~~~~~~~~~start of archive

>

> On the other hand- most of us are dealing with more than verbal

> apraxia.we just don't know that when our child is 2 -and we learn

> through professionals and observations as they continue to grow and

> more and more is expected of them. This is also why it's important

> to take your child for a neurodevelopmental medical exam when your

> child is suspected of apraxia to confirm or rule out other diagnosis

> such as sensory integration dysfunction etc. The earlier you know -

> the sooner to start appropriate therapies to get them up to speed by

> kindergarten.

>

> Don't let it overwhelm you -perhaps we aren't meant to know more

> than what we have to know at each stage. We'll be here to help along

> the way. It's OK to have any type of emotion when we find out our

> child has more than a simple delay -or " more " than " just " verbal

> apraxia. And it's OK to be completely overwhelmed and saddened to

> find out your child has apraxia. And as I was one of those parents

> it's never " just " apraxia when you find out!!!

>

> It's OK to be upset " just " because your child is a " late talker " too!

>

> Below is a new member archived message to hopefully answer more of

> your questions for now (did you read The Late Talker yet?) For updated

> information on fish oils and vitamin E and more - please visit the

> links section here

> /links

>

> What type of apraxic like speech behaviors are you seeing that makes

> you and the SLP suspect your child has apraxia vs. a simple delay in

> speech? Is your child talking at all yet? At your child's age -

> without speech, it's difficult to diagnose verbal apraxia -they

> could " suspect " verbal apraxia and begin treatment just in case,

> which wouldn't hurt your child if he ended up just having a simple

> delay. Just a few questions before we could provide more accurate

> answers:

>

> Does your child have signs of oral apraxia? (for example, can he on

> command smile, imitate funny faces, blow bubbles...if you put peanut

> butter anywhere around his mouth can he lick it off no matter where

> it is?)

> http://www.cherab.org/information/speechlanguage/oralapraxia.html

>

> Does your child have any neurological " soft signs " such as hypotonia

> or sensory integration dysfunction?

> http://www.cherab.org/information/speechlanguage/parentfriendlysoftsigns.html

>

> Who else evaluated your child? Was it only the SLP through your

> town school or was he also in Early Intervention through the state?

> (birth to three) Was he evaluated by both a speech pathologist as

> well as an occupational therapist? Was/were they knowledgeable

> about apraxia? (If your child wasn't diagnosed by an occupational

> therapist as well and professionals suspect apraxia -I highly

> recommend you request that too either through both the school as

> well as private through insurance for many reasons)

>

> To answer any questions you may have about taking your child to see a

> neurodevelopmental MD if he has not yet been to one and apraxia is

> suspected... in one word - " Yes!!! " I would have your child diagnosed

> (private) by a neurodevelopmental medical doctor (developmental

> pediatrician or pediatric neurologist) who is knowledgeable about

> apraxia and other neurologically based multi-faceted communication

> impairments for numerous reasons. Reasons include (but not limited

> to)

>

> *having a " hero " on the outside of the school who can assist in a

> therapeutic plan and oversee your child's development over the years

> *advocacy support with the insurance company

> * ruling out or confirming any neurological soft signs or any other

> reasons for the delay in speech

> *help those that ask " why isn't he talking yet " understand this is a

> medical condition -and has nothing to do with your child's cognitive

> ability. (if in your child's case it doesn't. Apraxia in itself

> does not affect a child's cognitive ability -and speaking early or

> late is no indication of a child's intelligence. Also contrary to

> popular belief -most who have speech impairments have average to

> above average intelligence)

>

> Here's an article written by Neurodevelopmental Pediatrician Dr.

> Marilyn Agin that was featured as a cover article in Contemporary

> Pediatrics -a trade magazine for hundreds of thousands of pediatric

> medical professionals across the US. (I wrote the parent guide)

>

> " The " late talker " -when silence isn't golden

> Not all children with delayed speech are " little Einsteins " or garden

> variety " late bloomers. " Some have a speech-language disorder that

> will persist unless warning signs are recognized and intervention

> comes early. Includes a Guide for Parents. "

>

> Podcast interview with Dr. Marilyn Agin from Contemporary Pediatrics

> http://contemporarypediatrics.modernmedicine.com/radio_peds4

>

> Actual article (where you can read it for free)

>

> http://drgreene.mediwire.com/main/Default.aspx?P=Content & ArticleID=132720

> or

> http://opsc.mediwire.com/main/Default.aspx?P=Content & ArticleID=132720

>

> My parent guide still works (for free)

>

http://www.contemporarypediatrics.com/contpeds/data/articlestandard/contpeds/492\

\

> 004/136315/article.pdf

>

> I would also have at least one private " out of pocket " (if possible)

> exam with a knowledgeable speech pathologist as well. This SLP can

> coordinate with your child's MD, and school therapist and other

> professionals, and again be there to assist in a therapeutic plan,

> help set goals and oversee your child's development over the years

> if needed.

>

>

> =====

>

[Guest guest]

Liz are you saying that your child had significant hypotonia and

laryngomalacia and the neurologist didn't diagnose either or are you

saying the neurologist diagnosed the significant hypotonia and

laryngomalacia but not the speech issue? Most of the children here

have mild low tone which isn't always picked up by the regular

pediatrician but should be by any neurologist. Significant hypotonia

is typically noticed by everyone -even a new parent as the infant

looks " floppy " When it's significant it's diagnosed as floppy infant

syndrome and we've had a few parents here that had children diagnosed

but again it's typically benign congenital hypotonia we see here.

It's true not all have knowledge in speech impairments which is why I

say ask around for referrals from other parents -or look to see who

in neurology is writing papers on speech impairments. I just did a

quick search for example and found this " apraxia clinic " in Ohio

online

" Neurological Diagnostic Apraxia Clinic

Directed by Amy J. Newmeyer, MD, the Neurological Diagnostic Apraxia

Clinic at Cincinnati Children's Hospital Medical Center is an

interdisciplinary clinic providing services for children with motor

disorders of speech and their families. A variety of terms may be

used to describe motor disorders of speech, including:

Developmental apraxia or dyspraxia of speech

Verbal apraxia

Oro-motor apraxia

Apraxia is a brain-based disorder thought to cause disruption of the

planning of motor movements necessary to produce speech sounds and /

or other complex motor movements. "

http://www.cincinnatichildrens.org/svc/alpha/d/disabilities/clinical/apraxia.htm

(Liz I know you are in Jersey so Dr. Agin or Dr. Cargan we talk about

here are close to you but that's just an example)

More about hypotonia:

What is Hypotonia?

Hypotonia is a medical term used to describe decreased muscle tone

(the amount of resistance to movement in a muscle). It is not the

same as muscle weakness, although the two conditions can co-exist.

Hypotonia may be caused by trauma, environmental factors, or by

genetic, muscle, or central nervous system disorders, such as Down

syndrome, muscular dystrophy, cerebral palsy, Prader-Willi syndrome,

myotonic dystrophy, and Tay-Sachs disease. Sometimes it may not be

possible to find what causes hypotonia. Infants with hypotonia have

a floppy quality or " rag doll " appearance because their arms and legs

hang by their sides and they have little or no head control. Other

symptoms of hypotonia include problems with mobility and posture,

breathing and speech difficulties, lethargy, ligament and joint

laxity, and poor reflexes. Hypotonia does not affect intellect.

However, depending on the underlying condition, some children with

hypotonia may take longer to develop social, language, and reasoning

skills. When hypotonia develops in the adult years, it may be due to

diseases associated with cerebellar degeneration (such as multiple

sclerosis, Friedreich's ataxia, or multiple system atrophy) in which

neurons in the cerebellum -- the area of the brain that controls

muscle coordination and balance -- deteriorate and die.

http://www.ninds.nih.gov/disorders/hypotonia/hypotonia.htm

About benign congenital hypotonia (or mild low tone)

http://www.patient.co.uk/showdoc/40001508/

http://www.lightlink.com/vulcan/benign/

I don't know as much about laryngomalacia but found it's

called " congenital laryngeal stridor " but did find that presents at

birth. When was your child diagnosed?

" What is congenital laryngeal stridor?

Congenital laryngeal stridor (also called laryngomalacia) results

from a congenital (present at birth) anomaly of the larynx (voice

box). A weakness in the structures in the larynx, can cause stridor.

Stridor is a high-pitched sound that is heard best when the child

breathes in (inspiration).

What causes congenital laryngeal stridor?

Congenital laryngeal stridor is a defect that is present at birth.

During fetal development, the structures in the larynx may not fully

develop. As a result, there is a weakness in these structures at

birth, causing them to collapse during breathing. In children,

congenital laryngeal stridor is the most common cause of chronic

stridor. Sixty percent of infants born with congenital laryngeal

stridor will have symptoms in the first week of life. Most other

infants will show symptoms by 5 weeks old. "

" How is congenital laryngeal stridor diagnosed?

In addition to a complete medical history and physical examination,

diagnostic procedures for congenital laryngeal stridor may include

bronchoscopy of the airways - a procedure which involves a tube being

passed into the airways to allow your child's physician to observe

the airways during breathing.

Treatment for congenital laryngeal stridor:

In most cases, congenital laryngeal stridor is a harmless condition

that resolves on its own, without medical intervention. The condition

usually improves by the time the infant is 18 months old and has no

long-term complications. In some cases, the stridor is apparent until

about the age of 5. Each child's case is unique. A small percentage

develop severe respiratory problems which require medical and

surgical interventions. "

http://www.healthsystem.virginia.edu/uvahealth/peds_respire/conlaryn.cfm

=====

[Guest guest]

Laryngolmalacia was diagnosed before we got there. Hypotonia, for the

first time, was noted in a report this summer...now that his tone is

much improved. Yes, was a floppy infant. I do not know how else

to say it but a LOT was missed. I did ask. I am not bashful as you

know. When you picked up you always had to support his back

until 18 mos. He was always dead weight. Dr. Agin no longer takes

patients and we have a metabolic neuro so I think we are now covered.

He also acknowledged the tone but like everyone is puzzled at the

improvement, which is so significant.

[Guest guest]

The laryngomalacia was diagnosed at birth. Has been followed by the

ENT. He had swallow issues which no one took me seriously about either.

The ENT missed stuff in both kids. We are off to a new one. Perhaps

this one will be as good as the cardiologist who found a heart

conndition in him that explains it all:) Finally, an answer!

[Guest guest]

Is it common for kids to have both laryngomalacia AND Apraxia? My son

also had/has laryngomalacia and was just diagnosed with Apraxia.

Just curious

>

> Liz are you saying that your child had significant hypotonia and

> laryngomalacia and the neurologist didn't diagnose either or are you

> saying the neurologist diagnosed the significant hypotonia and

> laryngomalacia but not the speech issue? Most of the children here

> have mild low tone which isn't always picked up by the regular

> pediatrician but should be by any neurologist. Significant hypotonia

> is typically noticed by everyone -even a new parent as the infant

> looks " floppy " When it's significant it's diagnosed as floppy

infant

> syndrome and we've had a few parents here that had children

diagnosed

> but again it's typically benign congenital hypotonia we see here.

>

> It's true not all have knowledge in speech impairments which is why

I

> say ask around for referrals from other parents -or look to see who

> in neurology is writing papers on speech impairments. I just did a

> quick search for example and found this " apraxia clinic " in Ohio

> online

> " Neurological Diagnostic Apraxia Clinic

> Directed by Amy J. Newmeyer, MD, the Neurological Diagnostic Apraxia

> Clinic at Cincinnati Children's Hospital Medical Center is an

> interdisciplinary clinic providing services for children with motor

> disorders of speech and their families. A variety of terms may be

> used to describe motor disorders of speech, including:

>

> Developmental apraxia or dyspraxia of speech

> Verbal apraxia

> Oro-motor apraxia

> Apraxia is a brain-based disorder thought to cause disruption of the

> planning of motor movements necessary to produce speech sounds and /

> or other complex motor movements. "

>

http://www.cincinnatichildrens.org/svc/alpha/d/disabilities/clinical/a

praxia.htm

>

> (Liz I know you are in Jersey so Dr. Agin or Dr. Cargan we talk

about

> here are close to you but that's just an example)

>

> More about hypotonia:

>

> What is Hypotonia?

>

>

> Hypotonia is a medical term used to describe decreased muscle tone

> (the amount of resistance to movement in a muscle). It is not the

> same as muscle weakness, although the two conditions can co-exist.

> Hypotonia may be caused by trauma, environmental factors, or by

> genetic, muscle, or central nervous system disorders, such as Down

> syndrome, muscular dystrophy, cerebral palsy, Prader-Willi syndrome,

> myotonic dystrophy, and Tay-Sachs disease. Sometimes it may not be

> possible to find what causes hypotonia. Infants with hypotonia have

> a floppy quality or " rag doll " appearance because their arms and

legs

> hang by their sides and they have little or no head control. Other

> symptoms of hypotonia include problems with mobility and posture,

> breathing and speech difficulties, lethargy, ligament and joint

> laxity, and poor reflexes. Hypotonia does not affect intellect.

> However, depending on the underlying condition, some children with

> hypotonia may take longer to develop social, language, and reasoning

> skills. When hypotonia develops in the adult years, it may be due

to

> diseases associated with cerebellar degeneration (such as multiple

> sclerosis, Friedreich's ataxia, or multiple system atrophy) in which

> neurons in the cerebellum -- the area of the brain that controls

> muscle coordination and balance -- deteriorate and die.

> http://www.ninds.nih.gov/disorders/hypotonia/hypotonia.htm

>

> About benign congenital hypotonia (or mild low tone)

> http://www.patient.co.uk/showdoc/40001508/

> http://www.lightlink.com/vulcan/benign/

>

> I don't know as much about laryngomalacia but found it's

> called " congenital laryngeal stridor " but did find that presents at

> birth. When was your child diagnosed?

>

> " What is congenital laryngeal stridor?

> Congenital laryngeal stridor (also called laryngomalacia) results

> from a congenital (present at birth) anomaly of the larynx (voice

> box). A weakness in the structures in the larynx, can cause stridor.

> Stridor is a high-pitched sound that is heard best when the child

> breathes in (inspiration).

>

> What causes congenital laryngeal stridor?

> Congenital laryngeal stridor is a defect that is present at birth.

> During fetal development, the structures in the larynx may not fully

> develop. As a result, there is a weakness in these structures at

> birth, causing them to collapse during breathing. In children,

> congenital laryngeal stridor is the most common cause of chronic

> stridor. Sixty percent of infants born with congenital laryngeal

> stridor will have symptoms in the first week of life. Most other

> infants will show symptoms by 5 weeks old. "

>

> " How is congenital laryngeal stridor diagnosed?

> In addition to a complete medical history and physical examination,

> diagnostic procedures for congenital laryngeal stridor may include

> bronchoscopy of the airways - a procedure which involves a tube

being

> passed into the airways to allow your child's physician to observe

> the airways during breathing.

>

> Treatment for congenital laryngeal stridor:

> In most cases, congenital laryngeal stridor is a harmless condition

> that resolves on its own, without medical intervention. The

condition

> usually improves by the time the infant is 18 months old and has no

> long-term complications. In some cases, the stridor is apparent

until

> about the age of 5. Each child's case is unique. A small percentage

> develop severe respiratory problems which require medical and

> surgical interventions. "

>

http://www.healthsystem.virginia.edu/uvahealth/peds_respire/conlaryn.c

fm

>

>

> =====

>

[Guest guest]

---

Hi ,

Since you are in South Florida, as we are, do you know of a good dev

pediatrician or pediatric neuro. in this area that are knowledgable

about apraxia and speech impairments ?

we went to the Dan marino center in miami last year and the

neurologist there said " you don't want apraxia because kids like that

don't wind up talking " !!! do you believe that nonsense?!? That leads

me to agree with other posts here that neurologists know squat about

speech disorders! When I told our SLPs about this they said he could

not be more wrong!!! So when i asked the neuro, what's the diagnosis,

he said " speech disorder " and PDD-NOS (for lack of what else to say!)

but couldn't say what kind. He just told us to concentrate on speech

therapy that emphasized PECS. ly, I don't think my son needs

that , he has some words and close word approximations---they have

the communication boards at his preschool. He had an MRI and EEG and

blood/urine tests which were normal, he wanted us to come back this

month, but frankly, i don't see the point! I made the mistake of

showing him the school eval results which of course showed some low-

normal scores,so he seemed to think borderline MR!!! do you believe

that!!! I told him the school has underestimated his abilities and he

finally said that's possible and let's see him in a couple of months.

He is starting his 2nd year in ESE. He is in the autism class

because when he had his eval last Dec, school psych thought he'd be

best served there because of his eval results and it's a smaller

class size. I have issues with those stupid evals! Early steps girls

said he'd get more attention in the autism class--they said the VE

classes are crowded and kids in there have cognitive problems. He has

speech services there but as a small group. He had his regular

teacher over the summer as well, and even she said he's come a along

way! But now for fall, they changed the teacher and SLP on us, new

one seems nice so I'll have to monitor the situation. and maybe the

new teacher will be even better than the other.... Don't understand

why he wouldn't stay with the same teacher, they told me the

assigments are random....

We started the ProEFA in April and over the past months, he really

has made progress---he gets excited and points and labels things out

to us, on the Disney channel, out shopping, and he loves the leap

frog DVD Letter factory--he sounds out all the letters. SLP is

working with the Kaufman cards with him and he says the words, or

close approx. on command---SLp says he wants to talk and communicate,

he's very motivated! He leaves the sound off the end of words,

like " boa " for boat but he can say the letter " t " on its own, and I

have heard him say " eat " . He also loves his music CDS and repeats the

sounds/words to those as well.

I could go on and on talking here but will stop for now

I have learned alot here, and am grateful for this group!

Any advice, ?

Thanks, Lynne and , age 3.5

In , " ilizzy03 " <lizlaw@...>

wrote:

>

> ,

>

> This part: Most pediatric neurologists just don't know speech,

>

> I still grapple with. I really thought my son would be OK because

> neurology cleared him, despite laryngomalacia, significant hypotonia

> and the rest but said " I do not know what to tell you about the

> speech. " It comes from the brain for goodness sakes!

>

> Liz

>

>

> >

> > I agree with Elena that not all medical doctors that work in

> > pediatrics are fully aware of the various types of communication

> > impairments in pediatrics today -however there are reasons to see

a

> > pediatric neurologist or developmental pediatrician outside of the

> > speech aspect. Apraxia appears to present today as a multifaceted

> > neurologically based communication impairment which is why you

want

> > someone who can confirm or rule out soft signs, hard signs,

genetic

> > syndromes, seizures or any other reasons for the delay/s. Of

course

> > you can seek out those pediatric neuroMDs who do have experience

in

> > diagnosis of various types of communication impairments including

but

> > not limited to autism. You can interview on the phone -seek out

> > referrals from other parents at in person support groups or here.

You

> > can interview on the phone -seek out referrals from other parents

at

> > in person support groups or here.

> >

> > Reasons to see a neurologist

> > Adapted from Clinical Practice Guidelines Communication Disorders

III

> > 22-25

> > In addition, the policy statement from the neurology journal

> > Neurology, (August, 2000), states that Absolute Indications for

> > Immediate Evaluation include,

> > · No babbling or pointing or other gestures by twelve months · No

> > single words by sixteen months · No two-word spontaneous phrases

by

> > twenty-four months · Any loss of any language or social skills at

any

> > age.

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

> >

> > I also want to point out that it's best to seek a second opinion

from

> > another SLP who is considered to be at least an area expert on

> > apraxia who comes highly recommended by parents of apraxic

children.

> >

> > Below are links to the cover article from Contemporary Pediatrics

> > which is the trade magazine to pediatric medical professionals

> > nationwide. You can print that out and bring that along with a

copy

> > of The Late Talker.

> >

> > There's much in The Late Talker as to why to see a

> > neurodevelopmental medical doctor since my one co author is a

> > neurodevelopmental medical doctor but below is a clip from the

> > archives as to why to take your child to a pediatric neurologist

or

> > developmental pediatrician if apraxia is suspected:

> >

> > ~~~~~~~~~~~start of archive

> >

> > On the other hand- most of us are dealing with more than verbal

> > apraxia.we just don't know that when our child is 2 -and we learn

> > through professionals and observations as they continue to grow

and

> > more and more is expected of them. This is also why it's important

> > to take your child for a neurodevelopmental medical exam when your

> > child is suspected of apraxia to confirm or rule out other

diagnosis

> > such as sensory integration dysfunction etc. The earlier you

know -

> > the sooner to start appropriate therapies to get them up to speed

by

> > kindergarten.

> >

> > Don't let it overwhelm you -perhaps we aren't meant to know more

> > than what we have to know at each stage. We'll be here to help

along

> > the way. It's OK to have any type of emotion when we find out our

> > child has more than a simple delay -or " more " than " just " verbal

> > apraxia. And it's OK to be completely overwhelmed and saddened to

> > find out your child has apraxia. And as I was one of those parents

> > it's never " just " apraxia when you find out!!!

> >

> > It's OK to be upset " just " because your child is a " late talker "

too!

> >

> > Below is a new member archived message to hopefully answer more of

> > your questions for now (did you read The Late Talker yet?) For

updated

> > information on fish oils and vitamin E and more - please visit the

> > links section here

> > /links

> >

> > What type of apraxic like speech behaviors are you seeing that

makes

> > you and the SLP suspect your child has apraxia vs. a simple delay

in

> > speech? Is your child talking at all yet? At your child's age -

> > without speech, it's difficult to diagnose verbal apraxia -they

> > could " suspect " verbal apraxia and begin treatment just in case,

> > which wouldn't hurt your child if he ended up just having a simple

> > delay. Just a few questions before we could provide more accurate

> > answers:

> >

> > Does your child have signs of oral apraxia? (for example, can he

on

> > command smile, imitate funny faces, blow bubbles...if you put

peanut

> > butter anywhere around his mouth can he lick it off no matter

where

> > it is?)

> > http://www.cherab.org/information/speechlanguage/oralapraxia.html

> >

> > Does your child have any neurological " soft signs " such as

hypotonia

> > or sensory integration dysfunction?

> >

http://www.cherab.org/information/speechlanguage/parentfriendlysoftsig

ns.html

> >

> > Who else evaluated your child? Was it only the SLP through your

> > town school or was he also in Early Intervention through the

state?

> > (birth to three) Was he evaluated by both a speech pathologist as

> > well as an occupational therapist? Was/were they knowledgeable

> > about apraxia? (If your child wasn't diagnosed by an occupational

> > therapist as well and professionals suspect apraxia -I highly

> > recommend you request that too either through both the school as

> > well as private through insurance for many reasons)

> >

> > To answer any questions you may have about taking your child to

see a

> > neurodevelopmental MD if he has not yet been to one and apraxia is

> > suspected... in one word - " Yes!!! " I would have your child

diagnosed

> > (private) by a neurodevelopmental medical doctor (developmental

> > pediatrician or pediatric neurologist) who is knowledgeable about

> > apraxia and other neurologically based multi-faceted communication

> > impairments for numerous reasons. Reasons include (but not limited

> > to)

> >

> > *having a " hero " on the outside of the school who can assist in a

> > therapeutic plan and oversee your child's development over the

years

> > *advocacy support with the insurance company

> > * ruling out or confirming any neurological soft signs or any

other

> > reasons for the delay in speech

> > *help those that ask " why isn't he talking yet " understand this

is a

> > medical condition -and has nothing to do with your child's

cognitive

> > ability. (if in your child's case it doesn't. Apraxia in itself

> > does not affect a child's cognitive ability -and speaking early or

> > late is no indication of a child's intelligence. Also contrary to

> > popular belief -most who have speech impairments have average to

> > above average intelligence)

> >

> > Here's an article written by Neurodevelopmental Pediatrician Dr.

> > Marilyn Agin that was featured as a cover article in Contemporary

> > Pediatrics -a trade magazine for hundreds of thousands of

pediatric

> > medical professionals across the US. (I wrote the parent guide)

> >

> > " The " late talker " -when silence isn't golden

> > Not all children with delayed speech are " little Einsteins " or

garden

> > variety " late bloomers. " Some have a speech-language disorder that

> > will persist unless warning signs are recognized and intervention

> > comes early. Includes a Guide for Parents. "

> >

> > Podcast interview with Dr. Marilyn Agin from Contemporary

Pediatrics

> > http://contemporarypediatrics.modernmedicine.com/radio_peds4

> >

> > Actual article (where you can read it for free)

> >

> > http://drgreene.mediwire.com/main/Default.aspx?

P=Content & ArticleID=132720

> > or

> > http://opsc.mediwire.com/main/Default.aspx?

P=Content & ArticleID=132720

> >

> > My parent guide still works (for free)

> >

http://www.contemporarypediatrics.com/contpeds/data/articlestandard/co

ntpeds/492\

> > 004/136315/article.pdf

> >

> > I would also have at least one private " out of pocket " (if

possible)

> > exam with a knowledgeable speech pathologist as well. This SLP can

> > coordinate with your child's MD, and school therapist and other

> > professionals, and again be there to assist in a therapeutic plan,

> > help set goals and oversee your child's development over the years

> > if needed.

> >

> >

> > =====

> >

[Guest guest]

I'm curious about your statement about Dr. Agin. I have an

appointment with her this sept. When did she stop taking patients?

--. Dr. Agin no longer takes

> patients and we have a metabolic neuro so I think we are now covered.

>

>

[Guest guest]

I was able to get my son an appt. to see her in June though there was a two

month waiting list.

[ ] Re: I need Info

> I'm curious about your statement about Dr. Agin. I have an

> appointment with her this sept. When did she stop taking patients?

>

>

> --. Dr. Agin no longer takes

> > patients and we have a metabolic neuro so I think we are now

> covered.

> >

> >

>

>

>

[Guest guest]

Last year I called and was told no new patients. I called again and got

an appt but by the time that was to occur we uncovered other stuff and

took a different direction. Later, when regression hit I called and was

told no new patients. Best wishes on your appt.

>

> I'm curious about your statement about Dr. Agin. I have an

> appointment with her this sept. When did she stop taking patients?

>

>

> --. Dr. Agin no longer takes

> > patients and we have a metabolic neuro so I think we are now

covered.

> >

> >

>