Did you test for Fragile X?

[Guest guest]

Hi,I am interested in how other families weighed the pros and cons of

genetic testing. Does everybody routinely get their child tested for

Fragile X?

My son was recently diagnosed with PDD-NOS and his doctor suggested we

have him screened due to the heart problems that coincide with Fragile

X syndrome. While my husband and I are concerned about the possible

physical problems, we have other concerns as well, one of which is

possible discrimination for both our son and us (since at least one of

us would be a carrier). I *think* the Genetic Nondiscrimination Act of

2008 is designed to protect us from health insurance and job

discrimination. However, the act does not cover life insurance,

disability insurance, or long-care insurance. We are not sure what to

do. I was hoping that other families might share their decision making

process with us....

[Guest guest]

The gene would not have come from your husband as the mutation can not be passed from a male to a male. Although autism and FX are closely related they can also be very different particularly in learning styles. There are also some health issues to be concerned about such as the heart problem that you mentioned also seizures, dyspraxia, hypotonia, and hyper arousal. Having an fx diagnosis will not hurt you in anyway; Like autism it is a spectrum disorder which can range for "normal" to severe mental retardation. Often times the most debilitating symptoms are ADHD, anxiety and hyper arousal all of which can be treated with medication and a good behavior program. But it is important that the service provider not build the program for autism as learning styles can be

quite different. Often times kids with FX that end up with an ABA program for autism can shut down. So for this reason it is important to know what you are dealing with. It is a simple blood test that any doctor can order. Also I don't know if you are having more children but FX carriers have pre mature ovarian failure which would limit the amount of time you would be able to conceive.

----- Original Message ----From: ajaymcp2000 <jaelmck-craigslist@...> Sent: Sunday, September 7, 2008 11:45:10 AMSubject: [ ] Did you test for Fragile X?

Hi,I am interested in how other families weighed the pros and cons of genetic testing. Does everybody routinely get their child tested for Fragile X? My son was recently diagnosed with PDD-NOS and his doctor suggested we have him screened due to the heart problems that coincide with Fragile X syndrome. While my husband and I are concerned about the possible physical problems, we have other concerns as well, one of which is possible discrimination for both our son and us (since at least one of us would be a carrier). I *think* the Genetic Nondiscrimination Act of 2008 is designed to protect us from health insurance and job discrimination. However, the act does not cover life insurance, disability insurance, or long-care insurance. We are not sure what to do. I was hoping that other families might share their decision making process with

us....

[Guest guest]

Hi Jane,

Thank you so much for answering my question. I had no idea that

learning styles could differ; the doctor didn't mention that. I

certainly want to give my son the best treatment plan possible and if

testing will allow for that, then it is something we have to consider

very strongly.

Janice

>

> The gene would not have come from your husband as the mutation can

not be passed from a male to a male. Although autism and FX are

closely related they can also be very different particularly in

learning styles.  There are also some health issues to be concerned

about such as the heart problem that you mentioned also seizures,

dyspraxia, hypotonia, and hyper arousal. Having an fx diagnosis will

not hurt you in anyway; Like autism it is a spectrum disorder which

can range for " normal " to severe mental retardation. Often times the

most debilitating symptoms are ADHD, anxiety and hyper arousal all of

which can be treated with medication and a good behavior program..

But it is important that the service provider not build the program

for autism as learning styles can be quite different. Often times

kids with FX that end up with an ABA program for autism can shut

down. So for this reason it is important to know what you are dealing

with. It is a simple

> blood test that any doctor can order. Also I don't know if you are

having more children but FX carriers have pre mature ovarian failure

which would limit the amount of time you would be able to conceive. 

>

>

>

> ----- Original Message ----

> From: ajaymcp2000 <jaelmck-craigslist@...>

>

> Sent: Sunday, September 7, 2008 11:45:10 AM

> Subject: [ ] Did you test for Fragile X?

>

>

> Hi,I am interested in how other families weighed the pros and cons

of

> genetic testing. Does everybody routinely get their child tested

for

> Fragile X?

>

> My son was recently diagnosed with PDD-NOS and his doctor suggested

we

> have him screened due to the heart problems that coincide with

Fragile

> X syndrome. While my husband and I are concerned about the possible

> physical problems, we have other concerns as well, one of which is

> possible discrimination for both our son and us (since at least one

of

> us would be a carrier). I *think* the Genetic Nondiscrimination Act

of

> 2008 is designed to protect us from health insurance and job

> discrimination. However, the act does not cover life insurance,

> disability insurance, or long-care insurance. We are not sure what

to

> do. I was hoping that other families might share their decision

making

> process with us....

>