Re: Re: Meyer Center Trip Report

[Guest guest]

Well, it's not, but then the question is 'what do you want out of a

medical diagnosis? " (oh--AVOID the Learning Center, by the way).

The problem is that the medical community in Houston is VERY conservative

and very far behind when it comes to anything having to do with autism.

I can count on one hand the number of docs who recognize non-genetic

medical problems that many children with autism have and that these

can even be treated! The medical center is all about size. As far

as I'm concerned Dr. Ralph an, the president of the TCH, is

better at building big buildings than he is at encouraging innovative

and effective treatment of children. They have yet to receive

one of the many grants for innovative research that have been given

out by the National Institute of Mental Health.

So most docs in Houston are still looking at autism as a " life sentence "

and giving a unreasonably (in most cases) poor prognosis--especially

these days with the work that Dr. is doing at U of Arkansas

(imagine that--a doc at U of Arkansas can get a grant from NIMH

and someone at the GREAT and POWERFUL Texas Children's can't--

sorry, I digress.) or the breakthroughs with oxytocin, and rumors

of Dr. Haley's developed a wonderful and safe new chelator. . . . . .

more studies being done with NAET and craniosacral therapy--

there is A LOT of hope these days. A LOT. But most of the physicians

in Houston who work with kids with autism are grim, very grim indeed.

Phooey on them, I say. (Phooey is a technical term by the way.)

The very first person I spoke to after a family friend suggested that my

child most likely had autism, was another mother of a kid w/autism who

happened to be a certified special ed teacher. She told me two things

that really guided my actions and decisions in the early days (now 6 years

ago).

She said that getting a diagnosis had been a waste of time for her, and

that nothing in her teacher training and preparation had prepared her

to teach her own child. Nothing.

I decided not to get a diagnosis until I wanted to get the insurance to

pay for ABA treatment--that was my reason for going through the process.

The only good thing that came out of the whole shabang was that my son

was given an additional diagnosis of : " expressive receptive language

disorder " which was the diagnosis under which I was able to obtain

2 hours of speech a week for him for a year--not autism. The autism

Dx got me practically zilcho paid for by insurance in the way of

treatments that turned out to be most effective for him.

Now I do agree with R. and Geraldine that there can be other valid

reasons to get some of the other neurological testing done because right

now, autism is a bit of a garbage can Dx. In 10 or 15 years when they

finally get the various sub-categories sorted out, we may find that our

children

have something very different and were just lumped into the same

category because they didn't have anything else. . . . . but for us, 6 years

ago

there were no pressing reasons to obtain a Dx immediately. However, with

a girl, you probably would be well advised to do some further testing. I

have

found that the people I know who have girls often find their girls have

other

medical issues that need to be addressed.

So, going back to my original question, what do you want out of the

diagnostic

process? Because you mentioned that your daughter was 5. That means

even if she did get an autism or pdd Dx, she would only qualify for

insurance

under the change in Texas law (assuming that you have a state regulated

policy or CHIP or Medicaid) until she turned 6 (possibly longer). . . .If I

were

in your shoes, I would almost consider getting a co-morbid Dx as a backup

in case she aged out before you got the Dx for her.

I would recommend UT Med Center. and that you really seek to network with

other parents of girls to find what they found to be most helpful in the

process.

Try to find parents of kids who are doing things similar to what your

daughter is

doing and see what helped them. I think that's one of the most useful

things

I've ever heard Portia Iverson (co-founder of CAN) say.

S.

Re: Meyer Center Trip Report

oh boy, this isn't very encouraging. I've been working for months

towards the goal of getting a referral for our 5 yr old daughter to

TCH...her referral form is being " reviewed " for referral to the

Learning Center or directly to the Autism clinic (I believe that's how

the secretary put it to me).

Our daughter has already been diagnosed with autism, and is already

receiving services from the school...but nobody here has any *experience*.

I was so hoping to fill that gap with TCH...I thought maybe they could

give us & the school some solid recommendations...and of course

identify any other issues she may have, etc...am I wasting precious time?

I just assumed that THC would be the best place to take her.

>

> Hi, I'm new to the group. I thought I would share a little true

> story with y'all.

>

> The Meyer Center (part of Texas Children's Hospital) is supposed to

> be the premier developmental pediatrics center in Houston and

> perhaps Texas. Nevertheless, we had a very bad experience down

> there last November. I thought I would share some of our

> experiences visiting the Meyer Center so here is my trip report.

> BTW, Dr. X is Dr. Nirupama Madduri.

>

> --- Tom Marking

>

>

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.

[Guest guest]

TCH has some physicians who can give you the autism diagnosis but after that

point they do not have any solutions. I do understand why you hope though, we

all hope that we can find professional help as its scarey to be on this journey

relying on ourselves. Often good speech and OT therapists in the private secttor

are more helpful than physicians.

To repeat Tom I've heard great stuff re. Danny .

Also the Tony Attwood conf in Oct in Houston will be invaluable for you

Go to www.FHautism.org You need to apply fast he books out quickly.

I will be at it signing books.

Diane

Singleton wrote:

Well, it's not, but then the question is 'what do you want out of a

medical diagnosis? " (oh--AVOID the Learning Center, by the way).

The problem is that the medical community in Houston is VERY conservative

and very far behind when it comes to anything having to do with autism.

I can count on one hand the number of docs who recognize non-genetic

medical problems that many children with autism have and that these

can even be treated! The medical center is all about size. As far

as I'm concerned Dr. Ralph an, the president of the TCH, is

better at building big buildings than he is at encouraging innovative

and effective treatment of children. They have yet to receive

one of the many grants for innovative research that have been given

out by the National Institute of Mental Health.

So most docs in Houston are still looking at autism as a " life sentence "

and giving a unreasonably (in most cases) poor prognosis--especially

these days with the work that Dr. is doing at U of Arkansas

(imagine that--a doc at U of Arkansas can get a grant from NIMH

and someone at the GREAT and POWERFUL Texas Children's can't--

sorry, I digress.) or the breakthroughs with oxytocin, and rumors

of Dr. Haley's developed a wonderful and safe new chelator. . . . . .

more studies being done with NAET and craniosacral therapy--

there is A LOT of hope these days. A LOT. But most of the physicians

in Houston who work with kids with autism are grim, very grim indeed.

Phooey on them, I say. (Phooey is a technical term by the way.)

The very first person I spoke to after a family friend suggested that my

child most likely had autism, was another mother of a kid w/autism who

happened to be a certified special ed teacher. She told me two things

that really guided my actions and decisions in the early days (now 6 years

ago).

She said that getting a diagnosis had been a waste of time for her, and

that nothing in her teacher training and preparation had prepared her

to teach her own child. Nothing.

I decided not to get a diagnosis until I wanted to get the insurance to

pay for ABA treatment--that was my reason for going through the process.

The only good thing that came out of the whole shabang was that my son

was given an additional diagnosis of : " expressive receptive language

disorder " which was the diagnosis under which I was able to obtain

2 hours of speech a week for him for a year--not autism. The autism

Dx got me practically zilcho paid for by insurance in the way of

treatments that turned out to be most effective for him.

Now I do agree with R. and Geraldine that there can be other valid

reasons to get some of the other neurological testing done because right

now, autism is a bit of a garbage can Dx. In 10 or 15 years when they

finally get the various sub-categories sorted out, we may find that our

children

have something very different and were just lumped into the same

category because they didn't have anything else. . . . . but for us, 6 years

ago

there were no pressing reasons to obtain a Dx immediately. However, with

a girl, you probably would be well advised to do some further testing. I

have

found that the people I know who have girls often find their girls have

other

medical issues that need to be addressed.

So, going back to my original question, what do you want out of the

diagnostic

process? Because you mentioned that your daughter was 5. That means

even if she did get an autism or pdd Dx, she would only qualify for

insurance

under the change in Texas law (assuming that you have a state regulated

policy or CHIP or Medicaid) until she turned 6 (possibly longer). . . .If I

were

in your shoes, I would almost consider getting a co-morbid Dx as a backup

in case she aged out before you got the Dx for her.

I would recommend UT Med Center. and that you really seek to network with

other parents of girls to find what they found to be most helpful in the

process.

Try to find parents of kids who are doing things similar to what your

daughter is

doing and see what helped them. I think that's one of the most useful

things

I've ever heard Portia Iverson (co-founder of CAN) say.

S.

Re: Meyer Center Trip Report

oh boy, this isn't very encouraging. I've been working for months

towards the goal of getting a referral for our 5 yr old daughter to

TCH...her referral form is being " reviewed " for referral to the

Learning Center or directly to the Autism clinic (I believe that's how

the secretary put it to me).

Our daughter has already been diagnosed with autism, and is already

receiving services from the school...but nobody here has any *experience*.

I was so hoping to fill that gap with TCH...I thought maybe they could

give us & the school some solid recommendations...and of course

identify any other issues she may have, etc...am I wasting precious time?

I just assumed that THC would be the best place to take her.

>

> Hi, I'm new to the group. I thought I would share a little true

> story with y'all.

>

> The Meyer Center (part of Texas Children's Hospital) is supposed to

> be the premier developmental pediatrics center in Houston and

> perhaps Texas. Nevertheless, we had a very bad experience down

> there last November. I thought I would share some of our

> experiences visiting the Meyer Center so here is my trip report.

> BTW, Dr. X is Dr. Nirupama Madduri.

>

> --- Tom Marking

>

>

Recent Activity

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for families on

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Beauty Groups

on Yahoo! Groups

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connect and share.

..

[Guest guest]

TCH has some physicians who can give you the autism diagnosis but after that

point they do not have any solutions. I do understand why you hope though, we

all hope that we can find professional help as its scarey to be on this journey

relying on ourselves. Often good speech and OT therapists in the private secttor

are more helpful than physicians.

To repeat Tom I've heard great stuff re. Danny .

Also the Tony Attwood conf in Oct in Houston will be invaluable for you

Go to www.FHautism.org You need to apply fast he books out quickly.

I will be at it signing books.

Diane

Singleton wrote:

Well, it's not, but then the question is 'what do you want out of a

medical diagnosis? " (oh--AVOID the Learning Center, by the way).

The problem is that the medical community in Houston is VERY conservative

and very far behind when it comes to anything having to do with autism.

I can count on one hand the number of docs who recognize non-genetic

medical problems that many children with autism have and that these

can even be treated! The medical center is all about size. As far

as I'm concerned Dr. Ralph an, the president of the TCH, is

better at building big buildings than he is at encouraging innovative

and effective treatment of children. They have yet to receive

one of the many grants for innovative research that have been given

out by the National Institute of Mental Health.

So most docs in Houston are still looking at autism as a " life sentence "

and giving a unreasonably (in most cases) poor prognosis--especially

these days with the work that Dr. is doing at U of Arkansas

(imagine that--a doc at U of Arkansas can get a grant from NIMH

and someone at the GREAT and POWERFUL Texas Children's can't--

sorry, I digress.) or the breakthroughs with oxytocin, and rumors

of Dr. Haley's developed a wonderful and safe new chelator. . . . . .

more studies being done with NAET and craniosacral therapy--

there is A LOT of hope these days. A LOT. But most of the physicians

in Houston who work with kids with autism are grim, very grim indeed.

Phooey on them, I say. (Phooey is a technical term by the way.)

The very first person I spoke to after a family friend suggested that my

child most likely had autism, was another mother of a kid w/autism who

happened to be a certified special ed teacher. She told me two things

that really guided my actions and decisions in the early days (now 6 years

ago).

She said that getting a diagnosis had been a waste of time for her, and

that nothing in her teacher training and preparation had prepared her

to teach her own child. Nothing.

I decided not to get a diagnosis until I wanted to get the insurance to

pay for ABA treatment--that was my reason for going through the process.

The only good thing that came out of the whole shabang was that my son

was given an additional diagnosis of : " expressive receptive language

disorder " which was the diagnosis under which I was able to obtain

2 hours of speech a week for him for a year--not autism. The autism

Dx got me practically zilcho paid for by insurance in the way of

treatments that turned out to be most effective for him.

Now I do agree with R. and Geraldine that there can be other valid

reasons to get some of the other neurological testing done because right

now, autism is a bit of a garbage can Dx. In 10 or 15 years when they

finally get the various sub-categories sorted out, we may find that our

children

have something very different and were just lumped into the same

category because they didn't have anything else. . . . . but for us, 6 years

ago

there were no pressing reasons to obtain a Dx immediately. However, with

a girl, you probably would be well advised to do some further testing. I

have

found that the people I know who have girls often find their girls have

other

medical issues that need to be addressed.

So, going back to my original question, what do you want out of the

diagnostic

process? Because you mentioned that your daughter was 5. That means

even if she did get an autism or pdd Dx, she would only qualify for

insurance

under the change in Texas law (assuming that you have a state regulated

policy or CHIP or Medicaid) until she turned 6 (possibly longer). . . .If I

were

in your shoes, I would almost consider getting a co-morbid Dx as a backup

in case she aged out before you got the Dx for her.

I would recommend UT Med Center. and that you really seek to network with

other parents of girls to find what they found to be most helpful in the

process.

Try to find parents of kids who are doing things similar to what your

daughter is

doing and see what helped them. I think that's one of the most useful

things

I've ever heard Portia Iverson (co-founder of CAN) say.

S.

Re: Meyer Center Trip Report

oh boy, this isn't very encouraging. I've been working for months

towards the goal of getting a referral for our 5 yr old daughter to

TCH...her referral form is being " reviewed " for referral to the

Learning Center or directly to the Autism clinic (I believe that's how

the secretary put it to me).

Our daughter has already been diagnosed with autism, and is already

receiving services from the school...but nobody here has any *experience*.

I was so hoping to fill that gap with TCH...I thought maybe they could

give us & the school some solid recommendations...and of course

identify any other issues she may have, etc...am I wasting precious time?

I just assumed that THC would be the best place to take her.

>

> Hi, I'm new to the group. I thought I would share a little true

> story with y'all.

>

> The Meyer Center (part of Texas Children's Hospital) is supposed to

> be the premier developmental pediatrics center in Houston and

> perhaps Texas. Nevertheless, we had a very bad experience down

> there last November. I thought I would share some of our

> experiences visiting the Meyer Center so here is my trip report.

> BTW, Dr. X is Dr. Nirupama Madduri.

>

> --- Tom Marking

>

>

Recent Activity

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connect and share.

..

[Guest guest]

Read Lianne Holliday Wiley and read Temple Grandin. Look for Dr. jeanette

McAfee's books , she has a daughter on the spectrum.

netshopper4five2002 wrote: One more

thing...I've never heard about the issue with girls & autism,

clue me in?

Autism does run in my family, not my husband's, though. I have four

relatives, all on my mother's side, all male, who are on the spectrum.

Funny thing was that I had totally forgotten about this until I took

her to the speech friend at school and that was one of the first

things she asked me...

> >

> > Hi, I'm new to the group. I thought I would share a little true

> > story with y'all.

> >

> > The Meyer Center (part of Texas Children's Hospital) is supposed to

> > be the premier developmental pediatrics center in Houston and

> > perhaps Texas. Nevertheless, we had a very bad experience down

> > there last November. I thought I would share some of our

> > experiences visiting the Meyer Center so here is my trip report.

> > BTW, Dr. X is Dr. Nirupama Madduri.

> >

> > --- Tom Marking

> >

> >

> Recent Activity

> a.. 11New Members

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> Visit Your Group

> Yahoo! Groups

> Having cancer is hard

>

> Finding help

>

> shouldn´t be.

>

> Healthy Eating

> A Yahoo! resource

>

> for families on

>

> how to eat healthy

>

> Beauty Groups

> on Yahoo! Groups

>

> A great place to

>

> connect and share.

> .

>

>

>

>

[Guest guest]

Read Lianne Holliday Wiley and read Temple Grandin. Look for Dr. jeanette

McAfee's books , she has a daughter on the spectrum.

netshopper4five2002 wrote: One more

thing...I've never heard about the issue with girls & autism,

clue me in?

Autism does run in my family, not my husband's, though. I have four

relatives, all on my mother's side, all male, who are on the spectrum.

Funny thing was that I had totally forgotten about this until I took

her to the speech friend at school and that was one of the first

things she asked me...

> >

> > Hi, I'm new to the group. I thought I would share a little true

> > story with y'all.

> >

> > The Meyer Center (part of Texas Children's Hospital) is supposed to

> > be the premier developmental pediatrics center in Houston and

> > perhaps Texas. Nevertheless, we had a very bad experience down

> > there last November. I thought I would share some of our

> > experiences visiting the Meyer Center so here is my trip report.

> > BTW, Dr. X is Dr. Nirupama Madduri.

> >

> > --- Tom Marking

> >

> >

> Recent Activity

> a.. 11New Members

> b.. 1New Photos

> Visit Your Group

> Yahoo! Groups

> Having cancer is hard

>

> Finding help

>

> shouldn´t be.

>

> Healthy Eating

> A Yahoo! resource

>

> for families on

>

> how to eat healthy

>

> Beauty Groups

> on Yahoo! Groups

>

> A great place to

>

> connect and share.

> .

>

>

>

>

[Guest guest]

Read Lianne Holliday Wiley and read Temple Grandin. Look for Dr. jeanette

McAfee's books , she has a daughter on the spectrum.

netshopper4five2002 wrote: One more

thing...I've never heard about the issue with girls & autism,

clue me in?

Autism does run in my family, not my husband's, though. I have four

relatives, all on my mother's side, all male, who are on the spectrum.

Funny thing was that I had totally forgotten about this until I took

her to the speech friend at school and that was one of the first

things she asked me...

> >

> > Hi, I'm new to the group. I thought I would share a little true

> > story with y'all.

> >

> > The Meyer Center (part of Texas Children's Hospital) is supposed to

> > be the premier developmental pediatrics center in Houston and

> > perhaps Texas. Nevertheless, we had a very bad experience down

> > there last November. I thought I would share some of our

> > experiences visiting the Meyer Center so here is my trip report.

> > BTW, Dr. X is Dr. Nirupama Madduri.

> >

> > --- Tom Marking

> >

> >

> Recent Activity

> a.. 11New Members

> b.. 1New Photos

> Visit Your Group

> Yahoo! Groups

> Having cancer is hard

>

> Finding help

>

> shouldn´t be.

>

> Healthy Eating

> A Yahoo! resource

>

> for families on

>

> how to eat healthy

>

> Beauty Groups

> on Yahoo! Groups

>

> A great place to

>

> connect and share.

> .

>

>

>

>

[Guest guest]

Well, Rhetts is something that only strikes girls, and it can present some

real

challenges.

I haven't read hard and fast research, just made my own, personal

observations,

and of the people I've met with girls on the spectrum, the girls seem to

have a

harder time acquiring skills--like a slower learning rate, and a greater

tendancy

to go through periods where they lose what they did learn.

On the other hand, there is Temple Grandin, who has made remarkable

achievements taking into account the era in which she grew up.

I would really encourage you to do some research in this area.

S.

Re: Meyer Center Trip Report

One more thing...I've never heard about the issue with girls & autism,

clue me in?

Autism does run in my family, not my husband's, though. I have four

relatives, all on my mother's side, all male, who are on the spectrum.

Funny thing was that I had totally forgotten about this until I took

her to the speech friend at school and that was one of the first

things she asked me...

.

[Guest guest]

Well, Rhetts is something that only strikes girls, and it can present some

real

challenges.

I haven't read hard and fast research, just made my own, personal

observations,

and of the people I've met with girls on the spectrum, the girls seem to

have a

harder time acquiring skills--like a slower learning rate, and a greater

tendancy

to go through periods where they lose what they did learn.

On the other hand, there is Temple Grandin, who has made remarkable

achievements taking into account the era in which she grew up.

I would really encourage you to do some research in this area.

S.

Re: Meyer Center Trip Report

One more thing...I've never heard about the issue with girls & autism,

clue me in?

Autism does run in my family, not my husband's, though. I have four

relatives, all on my mother's side, all male, who are on the spectrum.

Funny thing was that I had totally forgotten about this until I took

her to the speech friend at school and that was one of the first

things she asked me...

.

[Guest guest]

Well, Rhetts is something that only strikes girls, and it can present some

real

challenges.

I haven't read hard and fast research, just made my own, personal

observations,

and of the people I've met with girls on the spectrum, the girls seem to

have a

harder time acquiring skills--like a slower learning rate, and a greater

tendancy

to go through periods where they lose what they did learn.

On the other hand, there is Temple Grandin, who has made remarkable

achievements taking into account the era in which she grew up.

I would really encourage you to do some research in this area.

S.

Re: Meyer Center Trip Report

One more thing...I've never heard about the issue with girls & autism,

clue me in?

Autism does run in my family, not my husband's, though. I have four

relatives, all on my mother's side, all male, who are on the spectrum.

Funny thing was that I had totally forgotten about this until I took

her to the speech friend at school and that was one of the first

things she asked me...

.

[Guest guest]

Hi--

I didn't mean that she would age out of Medicaid because she won't.

What I meant is that

a new law will go into effect which requires insurance companies to pay

for treatment of children with autism if they are 3 or 4 or 5. Although the

law doesn't say that the companies can deny children who are 6 these

treatments, that's going to be up for grabs as to what will happen. This

law is mostly for people with private insurance.

Medicaid is already

supposed to be paying for treatment under the Texas Health Steps

program. If you haven't called them, you need to. They are a program

for children with chronic illness or developmental delays who are on

Medicaid. If you've already had a Dx of autism, then you should already

be able to qualify for those services under Medicaid through

Texas Health Steps.

S.

Re: Meyer Center Trip Report

She is on Medicaid and receives SSI as well. (I've never heard

anything about her aging out of Medicaid so please fill me in.)

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.

[Guest guest]

if your daughter had Rhetts you would know, it is very severe. There is a huge

loss of skills incluing walking often. The Rhetts clinic is at Blue Bird w/Dr.

Glaze and is visited by folk all over the States. I consider Rhetts much more

severe than other autism on the spectrum regarding functional abilities, and

other complicating medical factors. Its very rare.

D.

Singleton wrote:

Well, Rhetts is something that only strikes girls, and it can present

some

real

challenges.

I haven't read hard and fast research, just made my own, personal

observations,

and of the people I've met with girls on the spectrum, the girls seem to

have a

harder time acquiring skills--like a slower learning rate, and a greater

tendancy

to go through periods where they lose what they did learn.

On the other hand, there is Temple Grandin, who has made remarkable

achievements taking into account the era in which she grew up.

I would really encourage you to do some research in this area.

S.

Re: Meyer Center Trip Report

One more thing...I've never heard about the issue with girls & autism,

clue me in?

Autism does run in my family, not my husband's, though. I have four

relatives, all on my mother's side, all male, who are on the spectrum.

Funny thing was that I had totally forgotten about this until I took

her to the speech friend at school and that was one of the first

things she asked me...

..

[Guest guest]

if your daughter had Rhetts you would know, it is very severe. There is a huge

loss of skills incluing walking often. The Rhetts clinic is at Blue Bird w/Dr.

Glaze and is visited by folk all over the States. I consider Rhetts much more

severe than other autism on the spectrum regarding functional abilities, and

other complicating medical factors. Its very rare.

D.

Singleton wrote:

Well, Rhetts is something that only strikes girls, and it can present

some

real

challenges.

I haven't read hard and fast research, just made my own, personal

observations,

and of the people I've met with girls on the spectrum, the girls seem to

have a

harder time acquiring skills--like a slower learning rate, and a greater

tendancy

to go through periods where they lose what they did learn.

On the other hand, there is Temple Grandin, who has made remarkable

achievements taking into account the era in which she grew up.

I would really encourage you to do some research in this area.

S.

Re: Meyer Center Trip Report

One more thing...I've never heard about the issue with girls & autism,

clue me in?

Autism does run in my family, not my husband's, though. I have four

relatives, all on my mother's side, all male, who are on the spectrum.

Funny thing was that I had totally forgotten about this until I took

her to the speech friend at school and that was one of the first

things she asked me...

..

[Guest guest]

yes they do

netshopper4five2002 wrote: Hey Tom, they

don't take Medicaid, do they?

> >

> > We also had a horrible experience at Meyer Center.

> >

> > In our case, it was with Dr. Vinson (chief of staff). Our ordeal

> > lasted for 3 years with them.

> >

> >

>