XYY Syndrome

[Guest guest]

Until someone with personal knowledge in this are has time to

post, maybe this will help out http://ghr.nlm.nih.gov/condition=47xyysyndrome

Tonya

From:

Texas-Autism-Advocacy

[mailto:Texas-Autism-Advocacy ] On Behalf Of Dr.

Graham-Garza

Sent: Monday, May 25, 2009 7:46 AM

To: Texas-Autism-Advocacy

Subject: Re: Re: Has anyone had success with the

Tx Children's/Meyer Center program?

I'd also love

some more info - one of my boys has XYY as well - surprisingly it is my less

severe son. TCH diagnosed it but gave me little info or follow up.

They seemed more excited (yes, actually got giddy right in front of me)

that I had brothers being diagnosed at the same time but then disappointed when

only one of them came back with the extra chromosome. We would have been

someone's thesis if it had turned out otherwise I'm sure which still

would NOT have helped me out in the slightest. Just remember - TCH

is a very research based place (which is good up until a point) so a lot

of the additional visits is for documentation not for your child's sake but you

will still pay out of pocket for it.

-----

Original Message -----

From: jamiebohac@...

To: Texas-Autism-Advocacy

Sent: Monday, May 25, 2009

7:00 AM

Subject: Re:

Re: Has anyone had success with the Tx Children's/Meyer Center program?

,

Do you have any other info on the chromosomes? I've tried to google and

research it myself, but have come up empty!! Any info would be great. Thanks

Bohac

, Tx.

Sent via BlackBerry by AT & T

From: " "

Date: Mon, 25 May 2009 05:16:43 -0000

To: <Texas-Autism-Advocacy >

Subject: Re: Has anyone had success with the Tx

Children's/Meyer Center program?

yes, he was dx with xyy syndrome. The website

that Dr. Vinson was reading to me was called " The Criminal

Chromosome " . It involved a study done in Europe in the 60's with men in

prison. I believe 2 or 3 of the men had xyy, so.... they drew the conclusion

that men with xyy were more prone to be violent. That has since been totally

debunked.

>

> Do you mind sharing the chromosomes abnormality? Just curious because my

son has one as well, something to do with the long arm of the y and its axis!!

They told me they didn't know much about it because the only study was done on

prison inmates and that that it shows aggression!! That gave me hope!! We

didn't go to the meyer center though. Just curious!!!

>

> , Tx.

> Sent via BlackBerry by AT & T

>

> Re: Has anyone had success with the Tx

Children's/Meyer Center program?

>

>

> I've posted our experience on here before....But, it was pretty bad.

>

> We were there 4 years ago. It took us over 2 years to be seen. They lost

our paperwork a couple of times. Had a new patient freeze somewhere during that

time also. Our pediatrician finally made some phone calls and strong-armed

them. We had an appointment within a week after that.

>

> We saw Dr. Vinson. We were going for a full work up and testing. At that

point we only had the label from the school. She spent about 20 minutes in the

room with all of us. She did a very brief version of the wisc test on him. When

I say brief, I mean only a couple of questions from only 2 or 3 sections. She

then asked him to repeat a series of numbers back to her. Did a physical exam.

>

> She then told us that our son in no way had autism of any kind. Her

reasoning was because he was making very fleeting, brief eye contact with her

by the end of the appointment. She dx him with encephalopathy. ???? She did

decide she wanted some genetic testing done, along with the fragile x test.

(the only good thing to come out of the visit) She then sent Carmen in to visit

with us. We got a packet about dyslexia. That was IT!

>

> We were told we were going to get a full report from the visit. I got it

10 months later. This was with weekly phone calls from me looking for it. When

I got the report, it was full of errors. I tried to get more support from them

as far as school went. (what kind of services would benefit him) I was told I

was on my own, that they did not do that.

>

> We did get some results from the genetic testing. My son also has a

chromosome disorder. Dr. Vinson called me and was reading information off of

the internet to me. One was from a false website that was debunked years ago!

She told me my son was likely to be the one to go to jail out of his friends.

Her reasoning was that boys will be boys, but my son would not be able to talk

his way out of the situation due to his language disorder. ???? When I asked

for guidance about medications, etc.... She told me that Ritalin was an option

but she didn't like to use it because it was a gateway drug. Many kids will

grow up to be dependent on alcohol and cocaine once started on Ritalin. ????

>

> So, all in all a VERY disappointing experience. We did finally take our

son to the MIND Institute in Sacramento. Got the official medical dx. It also

opened the door to many other options here at home. Still feel pretty lost, but

better than a few years ago.

>