Hi everyone. Last night while searching for something concerning my other son, I came across a cross search about Fragile X, While my 6 year old has been DX with Asperger's I don't agree with the DX mainly because my son's IQ doesn't fit the DX of Aspergers.( He's very behind for his age level )

Anyhoo, I read more than 20+ pages on Fragile X and I swear my son fits this to a T.. Also, let me say, when I was preg with my now 4 year old she was * thought* to have Fragile X/ Down syndrome due to some levels and a U/S I had around 15 weeks into the pregnancy. I did have a Amino with her for this reason. The levels were all high, however, as far as we all know she doesn't have a mental disorders that have been noted.

My Question is, When it was thought that your child might have Fragile X did you have a blood test done ? also how long did it take for the results ?
My Son is on SSI will it cover the cost for this test ? if not, How much does it cost to have the test ?

My concerns are of course since FX and Autism are so closely related I want to make sure he gets the proper treatments and Rx's.. And since he had been on many RX's and still going Thur the In's and outs ( just had a Rx changed yesterday because it's not working )I want to make sure he is using the right treatments and Meds for FX Vs. Autism.

When he was 1st DX more than 3 years ago he was DX as being PDDNOS, Then he was later DX as having PDD NOS W/ ADHD, Then it went to PDD NOS W/ ADHD AND TORTE'S, Now it's Aspergers.
But like I said I don't agree with the DX due to he is NOT has NOT ever been on task with learning nor did he talk at the milestone, walk at the milestone, sit at the milestone, None of he milestones were OR being met Thus I don't agree with Aspergers.

Looking over the sites and reading what I read from 3 foundations I really really believe he has FX and Not Autism.

If you had your child tested for Fragile X could you please post here so I can get a better
understanding on what needs to be done and how to ask for the blood test.
Thank- You

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I'd be very careful about self-diagnosing even though you know your son better than anyone.

My son's second grade teacher recommended that we take him to a Pediatric Neurologist (because his IEP team was making noise like they were going to drop him from his IEP so we got him into the PN PRONTO). We were interviewed for about an hour and he ran our son through several quick and easy tests (ie running to the other end of the room, standing on one foot, etc). He gave his recommendations and *labeled* my son. Even though my son has absolutely no idea what he is labeled with (Asperger's), we turned this into the school.

We no longer have to worry about the school dropping his IEP. This is how the system works and you have to play the system.

It was so worth it to no longer have to worry about that AND once he was given the diagnosis, then we started to research and read. We were given about a 100 page list of books, websites, and articles on Asbergers. There is a lot of misinformation out there... especially on the web.

Not trying to discourage you from researching Fragile-X but I'd really get him to a Pediatric Neurologist and have him/her diagnose this.

Hope that helps! It's hard, I know. Hugs to you and your family.


PS Not sure about SSI? Our insurance covered all but our co-pay for the test but we had to get our family doctor to give us a referral as per the rules for our insurance. Our doctor is very good to us and actually researched the list of providers in our directory and recommended the BEST one off of the list.

The autism spectrum is large and varied, and there is a fine line between high functioning autism and asperger. They're all on the spectrum, just the degree varies. I have heard of fragile X, but do not know alot about it. Are you implying that those with fragile X have some autistic tendencies, but are not autistic?

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Hi Curthie,


He has been under a Pediatric Neurologist for 3 years,( however, we are seeing a new Pediatric Neurologist now in the top leading field ) he is the one that DX my son with Aspergers 3 months ago.

The Old Neurologist had DX him as being PDD NOS/ ADHD. His mental health Doc's agreed with the DX from the Neurologist also. However, Since this *New* Neurologist DX him as being Aspergers They have not said 1 way or another if they agree with it.

Now let me back up just a few steps. The New Neuro had never seen my son till the day he DX him Aspie, all he did was talk to me about 15 mins and had my son draw a picture, he looked at his understudy and said I believe he has Aspie ( Aspergers ) and he gave us a *New* med for my son to try.

Now for 3 + years neither his PN or the Mental Health had ever said to me he may have *Aspie*, they all agreed he did have PDD NOS/ ADHD, but never a full DX with Autism.

Now with Aspergers the hild in more cases than not has a *Normal IQ* However, my son's IQ isn't in the Normal range for his age ( he's 6 and he now repeating K for the 2nd time, because he couldn't test out of K last year, He also receives Special services 5 X's a week in school. He was tested 2 years ago and he was working on a 2.8 year range ( He was 5.8 then ) Half his age range ( mentally )

He had attended DD ( Delayed classes in public school ) since he was 3 years old.
He does have a IEP and we mets 2'x a year.

The reason I don't agree with the DX is because with Aspie the child is on TASK and usually has a HIGH IQ and met all their toddler milestones with NO delays. However,
He didn't walk till he was nearly 2, he didn't say a complete sentence till he was 4 and at the age of 3 he only spoke 5 words (that only we knew what they were )..

He also has had 1 eye surgery for lazy eye ( Fragile x this is one of the DX )The surgery failed and he is now Legally blind in the eye .

He has DESTROYED his bedroom and his sisters to the degree it just costed me and my husband over 2,000 to have them repaired 2 months ago. ( also another Sign of Fragile X and Autism )

He will not look you in the eye ( he will make a little eye contact, however it's a sec or 2 and then he will not look at you again >Autism and FX <

he has Seizures > had them since he was 2 and been and still being treated to this day with Meds> FX and Autism<

He also displays the hand biting . this was 1 of the 1st signs that alarmed us> FX
He also rocks ( he does this daily and sometimes for HOURS > FX and Autism < He has been rocking since he learned to sit at the age of 18 months, before that he rolled his head back and forth in the baby bed, got to back I had to place in in the car seat to keep him form crushing his head against the rails of the bed ,.

I also have 2 family members with unexplained mental retardation
1 is my sister she is profoundly MR, however no reason for her to be this way.
and
the other is my oldest Daughter ,alt ho she was mild, they don't know what caused her to be delayed , she was DX in K-4, she is now 25, she also has seizures.

But the most concern i have is that with my 4 year old she was thought to have FX , I was tested for abnormal cells Via Amino and the levels came back high very high, however, as far as I know I wasn't tested for the FX gene, or at least I was never told I was and if there was a problem.

He has many indications of having Fragile X However, with a DX of Aspie he only has a *Few* Thus why I dont agree with the currant DX of Aspie.
It just doesn't fit my son. But
Fragile X Is fitting my son to a T...

Hope this all made sense.

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PMd you - twice

Yes Crittles FX and Autism are closely related to each other, As a matter of fact *Most8 child with 1 will have the other, However, Some children only have one OR the other,

Here's a good link to read about it.

Birth Defects & Genetics: Fragile X Syndrome



links

Characteristics of Fragile X Syndrome - Fragilex.org

Genetic Testing

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Sorry aobut not posting till now, School called, my 4 year old is sick AGAIN.. Grr this has been nearly 2 weeks, Yuck !!

Anyhoo, Thank-You got the Pm and I've Pm'ed you back.

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If Fragile-X is diagnosed with a blood test, I'd ask your primary care physician or the pediatric neurologist to consider ordering up the test?

Again, I am not sure about how SSI handles fees but blood tests aren't generally too expensive.

There are yahoogroups on this topic.

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Jackie

Music is what feelings sound like._ ~Author Unknown

Also - you can be tested to see if you are a carrier for Fragile X. If you are not - there is no way your son could have it.

I was tested while pregnant because there was a case of unexplained mental retardation in my family many years old. I tested negative. I don't remember what it cost - insurance paid most of it.

HTH.

You might want to get a genetic study. You would probably need a referral from your pediatrician. This is probably the only sure fire way to determine if your ds has Fragile X. From what I understand those with Aspergers have an average to above average IQ. Also there is not a delay in talking or walking.

A psychologist who dx'd our ds(7) with ADHD suggested we get a genetic study done on ds. We went to the psychologist in the 1st place to see if ds had Aspergers (he was subsequently dx'd with ADHD). Through the genetic study they ruled out many different genetic disorders and found out he had a vitamin deficiency (carnitine which is an amino acid). They also tested for Fragile X which surprised me because ds has a high IQ but I guess you can't always be sure how some of these chromosomal disorders will present themselves. His test was negative.

I hope and pray you get some answers. It's such a hard journey in finding the correct diagnosis. Big hugs to you and your little guy.

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