Re: New to this and need some advice

[Guest guest]

Initially, my son was evaluated by a developmental pediatrician who

diagnosed him with PDD-NOS and referred him to a pediatric psychologist who

then

administered the Autism Diagnostic Observation Schedule (ADOS) assessment,

which

is the " gold standard " for assessing and diagnosing autism and pervasive

developmental disorder (PDD) across ages, developmental levels, and language

skills. She administered other assessments too. Neither of the above doctors

addressed food allergies. Unfortunately, a pediatrician who's a member of the

American Academy of Pediatrics is not going to tell you about biomedical

treatments and interventions for autism that a DAN! practitioner is going to.

They

are going to provide two different services.

Your child's allergies could be contributing to some of his symptoms. I have

a friend who's son didn't speak and when he was around 3 she took him off

milk, that evening he spoke his first words. Those results don't occur with all

children but it did for him. My son takes GlutenEase, which contains a

unique protease Thera-blend that exhibits gluten and casein digesting

qualities.

One of the proteases in this blend has been shown to be especially potent with

DPP-IV activity. The DPP-IV is able to break down an exorphin peptide (a

protein) believed to be a contributing factor in gluten and casein intolerance.

The addition of Amylase and Glucoamylase will assist in the digestion of the

non-protein portion of the cereal grains which often contain gluten, such as

wheat. Though my son hasn't had gut problems or severe digestive problems he

has had less bloating and gas while taking GlutenEase.

CReece

**************************************See AOL's top rated recipes

(http://food.aol.com/top-rated-recipes?NCID=aoltop00030000000004)

[Guest guest]

Initially, my son was evaluated by a developmental pediatrician who

diagnosed him with PDD-NOS and referred him to a pediatric psychologist who

then

administered the Autism Diagnostic Observation Schedule (ADOS) assessment,

which

is the " gold standard " for assessing and diagnosing autism and pervasive

developmental disorder (PDD) across ages, developmental levels, and language

skills. She administered other assessments too. Neither of the above doctors

addressed food allergies. Unfortunately, a pediatrician who's a member of the

American Academy of Pediatrics is not going to tell you about biomedical

treatments and interventions for autism that a DAN! practitioner is going to.

They

are going to provide two different services.

Your child's allergies could be contributing to some of his symptoms. I have

a friend who's son didn't speak and when he was around 3 she took him off

milk, that evening he spoke his first words. Those results don't occur with all

children but it did for him. My son takes GlutenEase, which contains a

unique protease Thera-blend that exhibits gluten and casein digesting

qualities.

One of the proteases in this blend has been shown to be especially potent with

DPP-IV activity. The DPP-IV is able to break down an exorphin peptide (a

protein) believed to be a contributing factor in gluten and casein intolerance.

The addition of Amylase and Glucoamylase will assist in the digestion of the

non-protein portion of the cereal grains which often contain gluten, such as

wheat. Though my son hasn't had gut problems or severe digestive problems he

has had less bloating and gas while taking GlutenEase.

CReece

**************************************See AOL's top rated recipes

(http://food.aol.com/top-rated-recipes?NCID=aoltop00030000000004)

[Guest guest]

Jen,

Regardless of any diagnosis, having these delayed allergies affects

your child's health and addressing them could be helpful to his well

being.

Physicians don't do official assessments and don't have the

certification to administer certain assessment tools that can

diagnose. Their diagnosis is clinical in nature. (I did learn that

developmental pediatricians can assess autism).

Getting a psychological evaluation for autism from Dr. Fellin

can help solve the assessment problem, and help you when it's

time to get in PPCD.

Are you receiving any ECI services?

I am in Plano, if you contact me off list I can email you ASCC's

parent resource packet.

Nagla

nagla_alvin@...

>

> Hi All,

>

> I had a frustrating experience today. I went to see Dr.

(Plano/Dallas) to discuss

> my 22 month-old son's blood work. He's also having skin testing

done for allergies. Dr.

> is a DAN! doctor -- that's how I found him; via their

website. When I called, I

> specifically asked if they DIAGNOSE autism, and was told they do.

>

> This was after trying unsuccessfully to get an appointment with a

developmental

> pediatrician (and I have good PPO insurance!) My son doesn't

speak, and spins/wobbles

> objects. That's about it as far as his symptoms. He has great eye

contact, social

> interaction (other than not answering to his name usually), laughs,

loves to be cuddled,

> sleeps well, eats well, etc.

>

> Dr. acknowledged his good eye contact, but that was about

it, and immediately

> suggested allergy testing for food and environmental

sensitivities. He did the blood draw,

> and Ian has had 2 days of skin tests, which really suck! He has no

eczema, hives, etc., but

> the skin tests showed him sensitive to soy, brewer's yeast, and

dust mites (so far). His

> blood work came back, and showed him negative for all " acute "

allergies, but positive for

> " delayed " allergies for gluten, dairy, wheat, etc.

>

> My frustration is this -- before I do something drastic (like

GFCF), shouldn't I at least get

> a diagnosis?? I feel like this doctor is putting the cart before

the horse, so to speak; acting

> before he has all the information. So far, we've spent about $1200

out-of-pocket for

> these tests, but have had no developmental assessment. When I

asked where my son is

> on the spectrum, he referred me to the people they have do their

assessments at the

> Autism Treatment Center of Dallas! I'm confused because I was told

that they do it at Dr.

> 's office. I was hoping for a diagnosis, followed by

recommended therapies,

> followed by dietary changes if necessary, followed by medication if

necessary.

>

> Does this doctor's approach sound a bit off to anyone else? I

fully acknowledge the

> benefits of GFCF to many children, but it would be a HUGE upheaval

for my son and I don't

> want to put him through any more unnecessary stuff until I know

what I'm dealing with.

>

> Any advice is much appreciated. I've also been given two other

developmental

> pediatrician's names -- Dr. Ray and Dr. Hitzfelder.

Any feedback on them is

> also very welcome.

>

> Thank you for reading this very long email! I'm sure you all

remember what it was like for

> you at the very beginning of your journey with Autism, and I

appreciate your help and

> support.

>

> Jen.

>

[Guest guest]

Jen,

Regardless of any diagnosis, having these delayed allergies affects

your child's health and addressing them could be helpful to his well

being.

Physicians don't do official assessments and don't have the

certification to administer certain assessment tools that can

diagnose. Their diagnosis is clinical in nature. (I did learn that

developmental pediatricians can assess autism).

Getting a psychological evaluation for autism from Dr. Fellin

can help solve the assessment problem, and help you when it's

time to get in PPCD.

Are you receiving any ECI services?

I am in Plano, if you contact me off list I can email you ASCC's

parent resource packet.

Nagla

nagla_alvin@...

>

> Hi All,

>

> I had a frustrating experience today. I went to see Dr.

(Plano/Dallas) to discuss

> my 22 month-old son's blood work. He's also having skin testing

done for allergies. Dr.

> is a DAN! doctor -- that's how I found him; via their

website. When I called, I

> specifically asked if they DIAGNOSE autism, and was told they do.

>

> This was after trying unsuccessfully to get an appointment with a

developmental

> pediatrician (and I have good PPO insurance!) My son doesn't

speak, and spins/wobbles

> objects. That's about it as far as his symptoms. He has great eye

contact, social

> interaction (other than not answering to his name usually), laughs,

loves to be cuddled,

> sleeps well, eats well, etc.

>

> Dr. acknowledged his good eye contact, but that was about

it, and immediately

> suggested allergy testing for food and environmental

sensitivities. He did the blood draw,

> and Ian has had 2 days of skin tests, which really suck! He has no

eczema, hives, etc., but

> the skin tests showed him sensitive to soy, brewer's yeast, and

dust mites (so far). His

> blood work came back, and showed him negative for all " acute "

allergies, but positive for

> " delayed " allergies for gluten, dairy, wheat, etc.

>

> My frustration is this -- before I do something drastic (like

GFCF), shouldn't I at least get

> a diagnosis?? I feel like this doctor is putting the cart before

the horse, so to speak; acting

> before he has all the information. So far, we've spent about $1200

out-of-pocket for

> these tests, but have had no developmental assessment. When I

asked where my son is

> on the spectrum, he referred me to the people they have do their

assessments at the

> Autism Treatment Center of Dallas! I'm confused because I was told

that they do it at Dr.

> 's office. I was hoping for a diagnosis, followed by

recommended therapies,

> followed by dietary changes if necessary, followed by medication if

necessary.

>

> Does this doctor's approach sound a bit off to anyone else? I

fully acknowledge the

> benefits of GFCF to many children, but it would be a HUGE upheaval

for my son and I don't

> want to put him through any more unnecessary stuff until I know

what I'm dealing with.

>

> Any advice is much appreciated. I've also been given two other

developmental

> pediatrician's names -- Dr. Ray and Dr. Hitzfelder.

Any feedback on them is

> also very welcome.

>

> Thank you for reading this very long email! I'm sure you all

remember what it was like for

> you at the very beginning of your journey with Autism, and I

appreciate your help and

> support.

>

> Jen.

>

[Guest guest]

I personally do not feel it is necessary to have a diagnosis prior to

beginning treatment. We attempted the GFCF diet, along with ST and OT

immediately after realizing our son was experiencing developmental delays.

We had no official diagnosis at the time, but didn't want to lose a second

of precious time!! I am so glad we began treating Gabe's symptoms when we

did and did not wait around on the various doctors and professionals we saw

to get their act together. As time passed, we realized that our son was

more severely affected than we first thought and if we had waited on the

professionals to give us an accurate diagnosis and a treatment plan, well -

we may still be waiting! I think it is wonderful that you began with a DAN!

doctor! I so wish we had begun where you are and not waited a year and a

half before addressing Gabe's symptoms through biomedical protocols.

I have heard many, many success stories of parents seeing great results

after removing allergens and other foods that their children are sensitive

to from their diets. It is not easy, but well worth the hard work if you

are one of the success stories!

>

> Hi All,

>

> I had a frustrating experience today. I went to see Dr.

> (Plano/Dallas) to discuss

> my 22 month-old son's blood work. He's also having skin testing done for

> allergies. Dr.

> is a DAN! doctor -- that's how I found him; via their website.

> When I called, I

> specifically asked if they DIAGNOSE autism, and was told they do.

>

> This was after trying unsuccessfully to get an appointment with a

> developmental

> pediatrician (and I have good PPO insurance!) My son doesn't speak, and

> spins/wobbles

> objects. That's about it as far as his symptoms. He has great eye contact,

> social

> interaction (other than not answering to his name usually), laughs, loves

> to be cuddled,

> sleeps well, eats well, etc.

>

> Dr. acknowledged his good eye contact, but that was about it, and

> immediately

> suggested allergy testing for food and environmental sensitivities. He did

> the blood draw,

> and Ian has had 2 days of skin tests, which really suck! He has no eczema,

> hives, etc., but

> the skin tests showed him sensitive to soy, brewer's yeast, and dust mites

> (so far). His

> blood work came back, and showed him negative for all " acute " allergies,

> but positive for

> " delayed " allergies for gluten, dairy, wheat, etc.

>

> My frustration is this -- before I do something drastic (like GFCF),

> shouldn't I at least get

> a diagnosis?? I feel like this doctor is putting the cart before the

> horse, so to speak; acting

> before he has all the information. So far, we've spent about $1200

> out-of-pocket for

> these tests, but have had no developmental assessment. When I asked where

> my son is

> on the spectrum, he referred me to the people they have do their

> assessments at the

> Autism Treatment Center of Dallas! I'm confused because I was told that

> they do it at Dr.

> 's office. I was hoping for a diagnosis, followed by recommended

> therapies,

> followed by dietary changes if necessary, followed by medication if

> necessary.

>

> Does this doctor's approach sound a bit off to anyone else? I fully

> acknowledge the

> benefits of GFCF to many children, but it would be a HUGE upheaval for my

> son and I don't

> want to put him through any more unnecessary stuff until I know what I'm

> dealing with.

>

> Any advice is much appreciated. I've also been given two other

> developmental

> pediatrician's names -- Dr. Ray and Dr. Hitzfelder. Any

> feedback on them is

> also very welcome.

>

> Thank you for reading this very long email! I'm sure you all remember what

> it was like for

> you at the very beginning of your journey with Autism, and I appreciate

> your help and

> support.

>

> Jen.

>

>

>

--

Peace,

Staci

Hoping does not mean doing nothing …It means a confident, alert expectation

that God will do what He said He will do. It is imagination put in the

harness of faith. It is a willingness to let God do it in His way and in His

time.

-Eugene

http://gabesjourney-gabesmom.blogspot.com/

[Guest guest]

I personally do not feel it is necessary to have a diagnosis prior to

beginning treatment. We attempted the GFCF diet, along with ST and OT

immediately after realizing our son was experiencing developmental delays.

We had no official diagnosis at the time, but didn't want to lose a second

of precious time!! I am so glad we began treating Gabe's symptoms when we

did and did not wait around on the various doctors and professionals we saw

to get their act together. As time passed, we realized that our son was

more severely affected than we first thought and if we had waited on the

professionals to give us an accurate diagnosis and a treatment plan, well -

we may still be waiting! I think it is wonderful that you began with a DAN!

doctor! I so wish we had begun where you are and not waited a year and a

half before addressing Gabe's symptoms through biomedical protocols.

I have heard many, many success stories of parents seeing great results

after removing allergens and other foods that their children are sensitive

to from their diets. It is not easy, but well worth the hard work if you

are one of the success stories!

>

> Hi All,

>

> I had a frustrating experience today. I went to see Dr.

> (Plano/Dallas) to discuss

> my 22 month-old son's blood work. He's also having skin testing done for

> allergies. Dr.

> is a DAN! doctor -- that's how I found him; via their website.

> When I called, I

> specifically asked if they DIAGNOSE autism, and was told they do.

>

> This was after trying unsuccessfully to get an appointment with a

> developmental

> pediatrician (and I have good PPO insurance!) My son doesn't speak, and

> spins/wobbles

> objects. That's about it as far as his symptoms. He has great eye contact,

> social

> interaction (other than not answering to his name usually), laughs, loves

> to be cuddled,

> sleeps well, eats well, etc.

>

> Dr. acknowledged his good eye contact, but that was about it, and

> immediately

> suggested allergy testing for food and environmental sensitivities. He did

> the blood draw,

> and Ian has had 2 days of skin tests, which really suck! He has no eczema,

> hives, etc., but

> the skin tests showed him sensitive to soy, brewer's yeast, and dust mites

> (so far). His

> blood work came back, and showed him negative for all " acute " allergies,

> but positive for

> " delayed " allergies for gluten, dairy, wheat, etc.

>

> My frustration is this -- before I do something drastic (like GFCF),

> shouldn't I at least get

> a diagnosis?? I feel like this doctor is putting the cart before the

> horse, so to speak; acting

> before he has all the information. So far, we've spent about $1200

> out-of-pocket for

> these tests, but have had no developmental assessment. When I asked where

> my son is

> on the spectrum, he referred me to the people they have do their

> assessments at the

> Autism Treatment Center of Dallas! I'm confused because I was told that

> they do it at Dr.

> 's office. I was hoping for a diagnosis, followed by recommended

> therapies,

> followed by dietary changes if necessary, followed by medication if

> necessary.

>

> Does this doctor's approach sound a bit off to anyone else? I fully

> acknowledge the

> benefits of GFCF to many children, but it would be a HUGE upheaval for my

> son and I don't

> want to put him through any more unnecessary stuff until I know what I'm

> dealing with.

>

> Any advice is much appreciated. I've also been given two other

> developmental

> pediatrician's names -- Dr. Ray and Dr. Hitzfelder. Any

> feedback on them is

> also very welcome.

>

> Thank you for reading this very long email! I'm sure you all remember what

> it was like for

> you at the very beginning of your journey with Autism, and I appreciate

> your help and

> support.

>

> Jen.

>

>

>

--

Peace,

Staci

Hoping does not mean doing nothing …It means a confident, alert expectation

that God will do what He said He will do. It is imagination put in the

harness of faith. It is a willingness to let God do it in His way and in His

time.

-Eugene

http://gabesjourney-gabesmom.blogspot.com/

[Guest guest]

If there were a blood test that a doctor could do, then I would say, yes,

you should get a

Dx (diagnosis) before you start down this path.

What you may not realize is that getting a Dx for autism means that on a

particular day

Your child exhibit enough behaviors in front of a particular assessor to get

2 check marks

in 3 Different categories to " qualify " as having autism. Nothing about

getting the

autism Dx in dev. Pediatrician's office or a neurologist's office or in a

psychologist's office will

Indicate whether your child needs to do any of the interventions that many

parents have

Seen help their child make gains. In fact most of the docs who do the

autism Dx are actually

NOT in favor of a lot of the treatments that parents on this list refer to

each other -so that

may only serve to confuse you more. In fact, there are many doctors who

still feel like a

Dx is a life sentence and that the recovery/improvement stories are just

wishful thinking

By crazy parents.

Something I will tell you about standard allergy treatment/testing is that

it is little better than

Voodoo. Western medicine hasn't put very much effort into understanding

allergies because

They aren't life threatening. I personally prefer NAET for allergies, but I

have a much higher

Tolerance for complimentary approaches that do most people.

That said, I would strongly urge you to get a copy of " Treating Autism " by

Drs. Edelson &

(the late) Rimland. As well as the latest DAN! Protocol. It may help you

make sense of

this a bit more. Of the people who are on the cutting edge treating autism,

most of them

agree that there is some type of underlying digestive disturbance, which if

you can get control

of in some way-either with the GFCF or Strict Carbohydrate or Body Ecology

or Low

Oxalate diet balanced with a supplement program that addresses your child's

malabsorption

Of essential nutrients---significant improvements can be made.

So, is a autism Dx going to get you a recommendation for all of that???

Probably not.

The wisest advice I got from the first parent I talked to after I realized

my son had a problem

Was that getting a Dx was a waste of time. For us, it totally was a waste

of time when I finally

Decided that I would go for the Dx in order to try to get insurance coverage

for some of the

Therapies that we were paying out of pocket. Never did get anything paid

for under the

Autism Dx, only under co-morbid Dxs.

This probably only confuses the situation more, but it's just my .02 cents.

From: Texas-Autism-Advocacy

[mailto:Texas-Autism-Advocacy ] On Behalf Of jr5366

Sent: Wednesday, December 19, 2007 9:09 PM

To: Texas-Autism-Advocacy

Subject: [sPAM] New to this and need some advice

My frustration is this -- before I do something drastic (like GFCF),

shouldn't I at least get

a diagnosis?? I feel like this doctor is putting the cart before the horse,

so to speak; acting

before he has all the information. So far, we've spent about $1200

out-of-pocket for

these tests, but have had no developmental assessment. When I asked where my

son is

on the spectrum, he referred me to the people they have do their assessments

at the

Autism Treatment Center of Dallas! I'm confused because I was told that they

do it at Dr.

's office. I was hoping for a diagnosis, followed by recommended

therapies,

followed by dietary changes if necessary, followed by medication if

necessary.

[Guest guest]

I beg to differ. Some allergies are indeed life threatening. Many people are

deathly allergic to shellfish, peanuts, bee stings. etc. People die every year

from accidental exposure to many allergens in addition those.

Also, Cole Therapy in Houston is apparently able to get some therapy covered

under Autism diagnosis on some insurance plans. So it may behoove you to get

the diagnosis, if in fact the child is Autistic.

Singleton wrote:

If there were a blood test that a doctor could do, then I would say, yes,

you should get a

Dx (diagnosis) before you start down this path.

What you may not realize is that getting a Dx for autism means that on a

particular day

Your child exhibit enough behaviors in front of a particular assessor to get

2 check marks

in 3 Different categories to " qualify " as having autism. Nothing about

getting the

autism Dx in dev. Pediatrician's office or a neurologist's office or in a

psychologist's office will

Indicate whether your child needs to do any of the interventions that many

parents have

Seen help their child make gains. In fact most of the docs who do the

autism Dx are actually

NOT in favor of a lot of the treatments that parents on this list refer to

each other -so that

may only serve to confuse you more. In fact, there are many doctors who

still feel like a

Dx is a life sentence and that the recovery/improvement stories are just

wishful thinking

By crazy parents.

Something I will tell you about standard allergy treatment/testing is that

it is little better than

Voodoo. Western medicine hasn't put very much effort into understanding

allergies because

They aren't life threatening. I personally prefer NAET for allergies, but I

have a much higher

Tolerance for complimentary approaches that do most people.

That said, I would strongly urge you to get a copy of " Treating Autism " by

Drs. Edelson &

(the late) Rimland. As well as the latest DAN! Protocol. It may help you

make sense of

this a bit more. Of the people who are on the cutting edge treating autism,

most of them

agree that there is some type of underlying digestive disturbance, which if

you can get control

of in some way-either with the GFCF or Strict Carbohydrate or Body Ecology

or Low

Oxalate diet balanced with a supplement program that addresses your child's

malabsorption

Of essential nutrients---significant improvements can be made.

So, is a autism Dx going to get you a recommendation for all of that???

Probably not.

The wisest advice I got from the first parent I talked to after I realized

my son had a problem

Was that getting a Dx was a waste of time. For us, it totally was a waste

of time when I finally

Decided that I would go for the Dx in order to try to get insurance coverage

for some of the

Therapies that we were paying out of pocket. Never did get anything paid

for under the

Autism Dx, only under co-morbid Dxs.

This probably only confuses the situation more, but it's just my .02 cents.

From: Texas-Autism-Advocacy

[mailto:Texas-Autism-Advocacy ] On Behalf Of jr5366

Sent: Wednesday, December 19, 2007 9:09 PM

To: Texas-Autism-Advocacy

Subject: [sPAM] New to this and need some advice

My frustration is this -- before I do something drastic (like GFCF),

shouldn't I at least get

a diagnosis?? I feel like this doctor is putting the cart before the horse,

so to speak; acting

before he has all the information. So far, we've spent about $1200

out-of-pocket for

these tests, but have had no developmental assessment. When I asked where my

son is

on the spectrum, he referred me to the people they have do their assessments

at the

Autism Treatment Center of Dallas! I'm confused because I was told that they

do it at Dr.

's office. I was hoping for a diagnosis, followed by recommended

therapies,

followed by dietary changes if necessary, followed by medication if

necessary.