Fw: MtD/AUTISM doctor and SCD

[Guest guest]

This was sent to me from Mitochondrial Disease (MtD) list serve, wanted to share

here in case it could be of help for someone:

" Dr. Marvin Natowicz is a neurogeneticist previously practicing at Mass General

Hosp., Boston and the Eunice Kennedy Shriver Center in Waltham, MA where he was

the Medical Director of Genetics. He is now a member of the metabolic team at

the Cleveland Clinic. Natowicz is specifically interested in metabolic

disorders in autism and, in a 1999 Boston based " LADDERS " lecture, enumerated a

number of " red flags " which invite investigation into underlying metabolic

(including mito) disease in autism. "

I was told that this doctor understands MtD and metabolic issue with autism

better than most in the USA, especially for those ASD/Pdd kids that are

" atypical " , and don't fit the autism criteria...yet have multiple health issues

and PDD problems and many symptoms of MtD. He is said to respect special diets

such as SCDiet. The wait is long to see him. We made appointment in

April....for this October 31st....what a Halloween it is going to be.

I hope this message finds those who need it.

Sincerely,

Antoinette (mom to Kiki-3 Mtd/autism)

[Guest guest]

Thank you for posting this. The Cleveland Clinic will actually be

covered by our insurance starting August 1st!!

I wonder if we could get into see him. My son doesn't have any

official diagnosis and I wonder if we have enough symptoms to warrant

seeing a metabolic doctor. Should we start with a GI or something instead?

K in Dayton, Ohio

Hashimoto's Thyroiditis, Fibro, CFS, yeast/candida, copper overload,

adrenal fatigue(mostly healed!!!)

Kids: son Rhowan 5 yrs old, chronic diarrhea/loose stools,

yeast/candida, ADHD, salicylate intolerance; daughter Willow 6.5 yrs

old, mild GI issues, salicylate intolerance

Started SCD June 2006, went slightly off for awhile in Nov 2006, back

on strict SCD starting May 2007. (Just redid intro the last week of

June 2007 and are struggling to find tolerated foods)

>

>

> This was sent to me from Mitochondrial Disease (MtD) list serve,

wanted to share here in case it could be of help for someone:

>

>

> " Dr. Marvin Natowicz is a neurogeneticist previously practicing at

Mass General Hosp., Boston and the Eunice Kennedy Shriver Center in

Waltham, MA where he was the Medical Director of Genetics. He is now

a member of the metabolic team at the Cleveland Clinic. Natowicz is

specifically interested in metabolic disorders in autism and, in a

1999 Boston based " LADDERS " lecture, enumerated a number of " red

flags " which invite investigation into underlying metabolic (including

mito) disease in autism. "

>

>

>

> I was told that this doctor understands MtD and metabolic issue with

autism better than most in the USA, especially for those ASD/Pdd kids

that are " atypical " , and don't fit the autism criteria...yet have

multiple health issues and PDD problems and many symptoms of MtD. He

is said to respect special diets such as SCDiet. The wait is long to

see him. We made appointment in April....for this October

31st....what a Halloween it is going to be.

>

>

>

> I hope this message finds those who need it.

>

>

>

> Sincerely,

>

>

>

> Antoinette (mom to Kiki-3 Mtd/autism)

>

>

>

>

>

[Guest guest]

My friend just came back from a consult with him. She was a little

disappointed. She felt he was more interested in collecting data then in

treating patients. If either of you want to e-mail her, I can put you in touch

with her.

-

Kuykendall wrote:

Thank you for posting this. The Cleveland Clinic will actually be

covered by our insurance starting August 1st!!

I wonder if we could get into see him. My son doesn't have any

official diagnosis and I wonder if we have enough symptoms to warrant

seeing a metabolic doctor. Should we start with a GI or something instead?

K in Dayton, Ohio

Hashimoto's Thyroiditis, Fibro, CFS, yeast/candida, copper overload,

adrenal fatigue(mostly healed!!!)

Kids: son Rhowan 5 yrs old, chronic diarrhea/loose stools,

yeast/candida, ADHD, salicylate intolerance; daughter Willow 6.5 yrs

old, mild GI issues, salicylate intolerance

Started SCD June 2006, went slightly off for awhile in Nov 2006, back

on strict SCD starting May 2007. (Just redid intro the last week of

June 2007 and are struggling to find tolerated foods)

>

>

> This was sent to me from Mitochondrial Disease (MtD) list serve,

wanted to share here in case it could be of help for someone:

>

>

> " Dr. Marvin Natowicz is a neurogeneticist previously practicing at

Mass General Hosp., Boston and the Eunice Kennedy Shriver Center in

Waltham, MA where he was the Medical Director of Genetics. He is now

a member of the metabolic team at the Cleveland Clinic. Natowicz is

specifically interested in metabolic disorders in autism and, in a

1999 Boston based " LADDERS " lecture, enumerated a number of " red

flags " which invite investigation into underlying metabolic (including

mito) disease in autism. "

>

>

>

> I was told that this doctor understands MtD and metabolic issue with

autism better than most in the USA, especially for those ASD/Pdd kids

that are " atypical " , and don't fit the autism criteria...yet have

multiple health issues and PDD problems and many symptoms of MtD. He

is said to respect special diets such as SCDiet. The wait is long to

see him. We made appointment in April....for this October

31st....what a Halloween it is going to be.

>

>

>

> I hope this message finds those who need it.

>

>

>

> Sincerely,

>

>

>

> Antoinette (mom to Kiki-3 Mtd/autism)

>

>

>

>

>

[Guest guest]

I am finding out that many of the MtD doctors are just there to diagnose....and

then send the child on there way.

They test and then they make a report to send to PCP or home town doctor so that

the child can get better care if they did have MtD diagnosis instead of

" autistic " or " Pdd NOS " . Without a diagnosis of MtD most of our ASD kids are

not getting the Medical care they need. This diagnosis is very important...yet

frustrating because they still do not know what to do for us.

Also, I was told, if they do find a cure for MtD it will be the ones with

diagnosis that will be able to get in line for treatment. So truly, I don't

know what to say about Dr. Natowitcz bed side manner. Very disappointing to be

honest. It appears that most MtD doctors are not able to offer more than

diagnosis and a few treatment ideas.

At least he is one of few that respects and knows that ASD is often caused by

MtD and metabolic conditions....and not assuming that this is behavioral, or

diagnosing something wrong. Better than most out there.

I have been on the phone much today talking to other MtD people. It appears

that every single MtD specialist...is just diagnosing MtD and then giving

suggestions in the test results on how to control this condition.

IN the end...it still appears to be " our problem " to find the solution for our

kids or ourselves...depending on who we are. Very disappointing. At least SCD

and other solutions are there for us. And armed with a MtD diagnosis...maybe

some of our kids will get better care. Now or in the future once they know

more. I don't know. FRUSTRATING.

Antoinette

[Guest guest]

WHAT IS MtD?

Bunce wrote: I am finding out that many of the

MtD doctors are just there to diagnose....and then send the child on there way.

They test and then they make a report to send to PCP or home town doctor so that

the child can get better care if they did have MtD diagnosis instead of

" autistic " or " Pdd NOS " . Without a diagnosis of MtD most of our ASD kids are not

getting the Medical care they need. This diagnosis is very important...yet

frustrating because they still do not know what to do for us.

Also, I was told, if they do find a cure for MtD it will be the ones with

diagnosis that will be able to get in line for treatment. So truly, I don't know

what to say about Dr. Natowitcz bed side manner. Very disappointing to be

honest. It appears that most MtD doctors are not able to offer more than

diagnosis and a few treatment ideas.

At least he is one of few that respects and knows that ASD is often caused by

MtD and metabolic conditions....and not assuming that this is behavioral, or

diagnosing something wrong. Better than most out there.

I have been on the phone much today talking to other MtD people. It appears that

every single MtD specialist...is just diagnosing MtD and then giving suggestions

in the test results on how to control this condition.

IN the end...it still appears to be " our problem " to find the solution for our

kids or ourselves...depending on who we are. Very disappointing. At least SCD

and other solutions are there for us. And armed with a MtD diagnosis...maybe

some of our kids will get better care. Now or in the future once they know more.

I don't know. FRUSTRATING.

Antoinette

[Guest guest]

Sorry....

MtD = Mitochondrial Disease One known cause for some forms of ASD/autism/ppd

nos

Go to www.umdf.org<http://www.umdf.org/> to learn more if you need to

I forget to first write it long first.

Antoinette and family of ASD with MtD

" The important thing is never to stop questioning. "

-Albert Einstein

"