Re: Gentic test for autism

March 4, 2009

In our experience, the neurologist was a waste of time and money for us. We

were referred to one by our pediatrician at my son's 3 year check-up because of

his language/etc delays. The only thing the neurologist told us was his brain

is fine then stamped my son with the PDD-NOS label and wouldn't even answer

simple questions like " will he ever be able to read. "

- in Mobile, AL

______________________________________

" You must write for children in the same way as you do for adults, only better. "

-Maxim Gorky (Aleksey Maksimovich Peshkov)

Reality lies beyond the horizon... Wonderwegian

Gentic test for autism

Hi,

We just saw the neurologist last week and he explained that they have

a new genetic test for autism called SHANK3 and CNTNAP2. The test just

became available. Does anyone have information on this? The

neurologist was very unclear if this test would give us any answers

and he was unsure if we should waste our money on this test. I would

like more information before investing in this test.

thanks,

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March 4, 2009

For us, the neuro was invaluable. She dx'd my son's " a-word " and also CP. Her

report opened lots of doors to therapies and services. I think it is so

unfortunate PDD-NOS and other labels do not qualify for services. If a child (or

adult, for that matter) need help, they should get it.

Kristy

Sent from my Verizon Wireless BlackBerry

Re: Gentic test for autism

In our experience, the neurologist was a waste of time and money for us. We

were referred to one by our pediatrician at my son's 3 year check-up because of

his language/etc delays. The only thing the neurologist told us was his brain

is fine then stamped my son with the PDD-NOS label and wouldn't even answer

simple questions like " will he ever be able to read. "

- in Mobile, AL

______________________________________

" You must write for children in the same way as you do for adults, only better. "

-Maxim Gorky (Aleksey Maksimovich Peshkov)

Reality lies beyond the horizon... Wonderwegian

Gentic test for autism

Hi,

We just saw the neurologist last week and he explained that they have

a new genetic test for autism called SHANK3 and CNTNAP2. The test just

became available. Does anyone have information on this? The

neurologist was very unclear if this test would give us any answers

and he was unsure if we should waste our money on this test. I would

like more information before investing in this test.

thanks,

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http://www.pctools.com/free-antivirus/

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March 4, 2009

> waste of money imho

>

> natasa

>

> Hi,

>

> We just saw the neurologist last week and he explained that they have

> a new genetic test for autism called SHANK3 and CNTNAP2. The test just

> became available. Does anyone have information on this? The

> neurologist was very unclear if this test would give us any answers

> and he was unsure if we should waste our money on this test. I would

> like more information before investing in this test.

>

> thanks,

>

March 4, 2009

I also vote waste of money. A neuro was also a complete waste of

time for us. All they wanted to do was drug my kid and try to tell

me he didn't have autism because he had good eye contact in the whole

3 minutes he was with him. Never mind that my son's eye contact was

fleeting when you were actually talking to him. Total waste of time.

Cheryl

~ http://www.gryffins-tail.blogspot.com ~

On Mar 2, 2009, at 11:05 AM, heatherloganhomes wrote:

> Hi,

>

> We just saw the neurologist last week and he explained that they have

> a new genetic test for autism called SHANK3 and CNTNAP2. The test just

> became available. Does anyone have information on this? The

> neurologist was very unclear if this test would give us any answers

> and he was unsure if we should waste our money on this test. I would

> like more information before investing in this test.

>

> thanks,

>

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

>

> Responsibility for the content of this message lies strictly with

> the original author(s), and is not necessarily endorsed by or the

> opinion of the Research Institute, the Parent Coalition,

> or the list moderator(s).

>

March 4, 2009

why???

Sincerely Noel

From: Neno/Natasa <neno@...>

Subject: Re: Gentic test for autism

Date: Wednesday, March 4, 2009, 1:25 PM

> waste of money imho

>

> natasa

>

> Hi,

>

> We just saw the neurologist last week and he explained that they have

> a new genetic test for autism called SHANK3 and CNTNAP2. The test just

> became available. Does anyone have information on this? The

> neurologist was very unclear if this test would give us any answers

> and he was unsure if we should waste our money on this test. I would

> like more information before investing in this test.

>

> thanks,

>

March 4, 2009

cause what help is that info it gives no hope for a brighter future. Also the

chicken and egg theory what came first the infections or the mutations.

thats just my opinion. kavita

From: Neno/Natasa <nenodalmaholidays (DOT) co.uk>

Subject: Re: Gentic test for autism

groups (DOT) com

Date: Wednesday, March 4, 2009, 1:25 PM

> waste of money imho

>

> natasa

>

> Hi,

>

> We just saw the neurologist last week and he explained that they have

> a new genetic test for autism called SHANK3 and CNTNAP2. The test just

> became available. Does anyone have information on this? The

> neurologist was very unclear if this test would give us any answers

> and he was unsure if we should waste our money on this test. I would

> like more information before investing in this test.

>

> thanks,

>

March 4, 2009

Something interesting I learned in school is how

viruses can actually inject its DNA into

cells...maybe thats where the mutations come from

then??

-

--- kavita mallik <kavita_d_mallik@...> wrote:

> cause what help is that info it gives no hope for a

> brighter future. Also the chicken and egg theory

> what came first the infections or the mutations.

> thats just my opinion. kavita

>

> From: Neno/Natasa <nenodalmaholidays (DOT) co.uk>

> Subject: Re: Gentic test for autism

> groups (DOT) com

> Date: Wednesday, March 4, 2009, 1:25 PM

>

> > waste of money imho

> >

> > natasa

> >

> > Hi,

> >

> > We just saw the neurologist last week and he

> explained that they have

> > a new genetic test for autism called SHANK3 and

> CNTNAP2. The test just

> > became available. Does anyone have information on

> this? The

> > neurologist was very unclear if this test would

> give us any answers

> > and he was unsure if we should waste our money on

> this test. I would

> > like more information before investing in this

> test.

> >

> > thanks,

> >

>

> [Non-text portions of this message have been

> removed]

>

> [Non-text portions of this message have been

> removed]

>

> [Non-text portions of this message have been

> removed]

>

May the Lord bless you and keep you!

Visit my blog

http://bloominwhereyourplanted.blogspot.com/

March 4, 2009

indeed , all the genetics funding has come up with zip.

sorry NIH , but its true.

ray

________________________________

From: on behalf of Neno/Natasa

Sent: Wed 3/4/2009 3:25 PM

Subject: Re: Gentic test for autism

> waste of money imho

>

> natasa

>

> Hi,

>

> We just saw the neurologist last week and he explained that they have

> a new genetic test for autism called SHANK3 and CNTNAP2. The test just

> became available. Does anyone have information on this? The

> neurologist was very unclear if this test would give us any answers

> and he was unsure if we should waste our money on this test. I would

> like more information before investing in this test.

>

> thanks,

>

March 5, 2009

,

We have been offered many tests over the years and it has become our

family¹s policy that if it will not lead to any helpful treatment for our

child, then it¹s not something we can afford to be putting our money into.

We have to put our money where is it is most effective because we have

limited resources. I think that docs love to have lots if information...

and to them it is fascinating to have the results of these tests. But we¹re

the ones paying the bills!

The two tests above just show a genetic tendency toward autism according to

what I¹ve read (you can Google them).

Anyway, just my two cents worth.

Caroline G.

From: Neno/Natasa <neno@...>

Reply-< >

Date: Wed, 04 Mar 2009 21:25:00 +0000

< >

Subject: Re: Gentic test for autism

> We just saw the neurologist last week and he explained that they have

> a new genetic test for autism called SHANK3 and CNTNAP2. The test just

> became available. Does anyone have information on this? The

> neurologist was very unclear if this test would give us any answers

> and he was unsure if we should waste our money on this test. I would

> like more information before investing in this test.

>

> thanks,

>

March 5, 2009

We live in California and it is difficult to find a metabolic/geneticist to run

any tests even if I beg them....where do you find these doctors, I would love to

find one....

Thanks

Sincerely Noel

From: Caroline Glover <sfglover@...>

Subject: Re: Gentic test for autism

Date: Thursday, March 5, 2009, 11:55 AM

,

We have been offered many tests over the years and it has become our

family¹s policy that if it will not lead to any helpful treatment for our

child, then it¹s not something we can afford to be putting our money into.

We have to put our money where is it is most effective because we have

limited resources. I think that docs love to have lots if information. ..

and to them it is fascinating to have the results of these tests. But we¹re

the ones paying the bills!

The two tests above just show a genetic tendency toward autism according to

what I¹ve read (you can Google them).

Anyway, just my two cents worth.

Caroline G.

From: Neno/Natasa <nenodalmaholidays (DOT) co.uk>

Reply-<groups (DOT) com>

Date: Wed, 04 Mar 2009 21:25:00 +0000

Subject: Re: Gentic test for autism

> We just saw the neurologist last week and he explained that they have

> a new genetic test for autism called SHANK3 and CNTNAP2. The test just

> became available. Does anyone have information on this? The

> neurologist was very unclear if this test would give us any answers

> and he was unsure if we should waste our money on this test. I would

> like more information before investing in this test.

>

> thanks,

>

March 5, 2009

>

> both have been ³associated² with a autism but account for a VERY few cases

> meaning that most of asd go not have those genes, and than even those that do,

> there is no way (at present) of telling if those genes actually have anything

> to do with their autism. The theory is that they MIGHT be contributing, but

> then typical people have those same mutations and are typical.... So in short

> having confirmation of those gene profiles would not tell you if they are

> really implicated in your child¹s condition.

>

> secondly, even if they are really implicated (and you won¹t know that for

> sure), that would not inform your treatment options.

>

> natasa

>

> why???

>

> Sincerely Noel

>

> From: Neno/Natasa <neno@...

> <mailto:neno%40dalmaholidays.co.uk> >

> Subject: Re: Gentic test for autism

> <mailto:%40>

> Date: Wednesday, March 4, 2009, 1:25 PM

>

>> > waste of money imho

>> >

>> > natasa

>> >

>> > Hi,

>> >

>> > We just saw the neurologist last week and he explained that they have

>> > a new genetic test for autism called SHANK3 and CNTNAP2. The test just

>> > became available. Does anyone have information on this? The

>> > neurologist was very unclear if this test would give us any answers

>> > and he was unsure if we should waste our money on this test. I would

>> > like more information before investing in this test.

>> >

>> > thanks,

>> >

>

March 5, 2009

We took her to see Dr Braum in the valley (ca). He's a little strange but has

lots of experience.

>

> From: Caroline Glover <sfglover@...>

> Subject: Re: Gentic test for autism

>

> Date: Thursday, March 5, 2009, 11:55 AM

>

> ,

>

> We have been offered many tests over the years and it has become our

> family¹s policy that if it will not lead to any helpful treatment for our

> child, then it¹s not something we can afford to be putting our money into.

> We have to put our money where is it is most effective because we have

> limited resources. I think that docs love to have lots if information. ..

> and to them it is fascinating to have the results of these tests. But we¹re

> the ones paying the bills!

>

> The two tests above just show a genetic tendency toward autism according to

> what I¹ve read (you can Google them).

>

> Anyway, just my two cents worth.

>

> Caroline G.

>

> From: Neno/Natasa <nenodalmaholidays (DOT) co.uk>

> Reply-<groups (DOT) com>

> Date: Wed, 04 Mar 2009 21:25:00 +0000

> <groups (DOT) com>

> Subject: Re: Gentic test for autism

>

> > We just saw the neurologist last week and he explained that they have

> > a new genetic test for autism called SHANK3 and CNTNAP2. The test just

> > became available. Does anyone have information on this? The

> > neurologist was very unclear if this test would give us any answers

> > and he was unsure if we should waste our money on this test. I would

> > like more information before investing in this test.

> >

> > thanks,

> >

>

March 5, 2009

Hi Noel,

I guess I have been very fortunate in that every doctor that my oldest visits,

they want to run a genetic test. The first one was in Germany when he was just

being diagnosed. It was only for Fragile X and that came back negative. I now

live in Ohio and his neurologist was fascinated in that I have two children on

the spectrum and they have a cousin and a great Uncle that has seizures. She

ordered tests for fragile X (again), some other genes that had recently been

associated with autism and then some tests on genes associated with seizures.

Unfortunately, they all came back negative so I am still in the dark. On top of

that, I enlisted my children in the AGRE project, see this link:

http://www.autismspeaks.org/science/science_news/gene_variant_associated_gi_dysf\

unction_autism.php

If you go there, you will see a story about the MET gene which AGRE confirmed

that a subgroup of individuals with autism suffer from GI problems. Please

check out the ATN network because there are 15 universities around the country

that participate in this. I must warn you that it is easier to be in a project

if you have more than one child on the spectrum. I have two children and they

both have autism (but I prefer to call it ). btw- The genetics dept. that I

work with at Nationwide's Children Hospital in Columbus really do think my our

genes would be helpful since I have 3 relatives with CFIDS (two on my side of

the family and one one the father) and that the father's family also suffers

from depression. Both sides of my children's family have autoimmune related

disorders (including diabetes). The downside to the AGRE research is that they

will only contact you if they find an obvious mutation (such as Fragile X) so if

you know that your child or

loved on does not have it, it will be not useful for you but it will be

valuable to other researchers out there.

All the best,

Jill

March 5, 2009

Thank you for your response, I really appreciate the info....

Sincerely Noel

From: Jill Boyer <sjillboyer@...>

Subject: Re: Gentic test for autism

Date: Thursday, March 5, 2009, 7:56 PM