XYY Syndrome Information

[Guest guest]

I had responded on the TX Children's Hospital thread, and a few people asked

about xyy. I thought I'd just start a new post with what we have learned over

the years....

We received the xyy dx when our son was 8 1/2 years old. Prior to that, we had

known something was going on since he was a toddler. We received the pdd-nos

label from our school district when he was in Kindergarten. It was then that we

started the process to get into TX Children's.

When we went to TX Children's, they did chromosome mapping. That's when we

discovered xyy syndrome. I had NEVER heard of it before. The dr's at TX

Children's had never seen a patient with one. We were referred to the genetics

clinic.

We actually didn't receive any info from them about xyy. All we were told at

that point is that 1 in 1,000 boys are born with it. Boys MAY or MAY NOT have

behavioral and learning issues with it. Boys with xyy are usually tall. Their

IQ's MAY be 10 points lower than siblings. They MAY or MAY NOT have acne as

teenagers. Hmmm, not much to go on. The info that was provided is basically

all you can find on the internet. At that point in time, the dr's were much

more interested in what else could be going on here. Our son had several other

indicators that more could be going on, so they really focused on that.

A year later, we went back to TCH genetics for a follow up. We had a new doctor

who focuses on Autism. He informed me at that point that it was very common to

see xyy boys also have autism. He provided a study report to me that showed

statistically that xyy syndrome is the most common chromosome disorder

associated with autism. It has passed up Fragile X in its numbers. (meaning

most boys with xyy (with problems) also have autism.) He also gave me a report

that showed though XYY was fairly " common " , only 10% of the 1 in 1,000 born with

it have any problems with it. Most of the men born with xyy are never aware

they even have it.

We still did not know what we should be doing for him. We just weren't getting

the guidance we needed from anyone! Should we do speech therapy, occupational

therapy, what programs in school, etc...

It was through my XYY support group that I heard about a developmental

pediatrician at the MIND Institute who specialized in our XYY boys and autism.

I had also heard about the MIND Institute here and through another autism

support group. I heard wonderful things about them. I contacted the

pediatrician who got an appointment scheduled for us, along with participation

in a study for autism that would do the full battery of tests for us.

I say our experience with the MIND Institute was wonderful because they devoted

3 full days with us. They performed the ADOS, ADI, Vineland, Stanford-Binet,

and SEVERAL other tests. The woman who did the ADI with me was one of the

creators of it. They did another chromosome analysis on him to confirm

everything. The ADOS was done by the developmental pediatrician, but with a

psychologist, and another behavioral specialist observing in another room. They

all collaborated so there wouldn't be any bias.

At the end of the 3rd day, the pediatrician went over all of the testing with

me. She went through each test section by section and explained the whys behind

their conclusions. It was wonderful --- NO ONE had ever done that with us

before. She then gave me some more things to look out for with xyy. (tremors,

scoliosis) We went over a gameplan for school. She gave her recommendations on

what he needed outside of school. She also went over all medication options for

him. She conferred with my pediatrician locally. Again, no one had ever done

this either. At that point, we had so many cooks in the kitchen and none of

them were talking to each other.

I also received a FULL report on everything discussed from her. That report

really saved us when I enrolled my son in middle school here in Klein ISD. That

report is gold to us.

So, that is where we are at this point. His XYY dx is really a backburner dx.

PDD-NOS is primary, followed by seizure disorder, followed by bipolar, followed

by kidneys, then xyy. I can't say I know much more about the whys behind all of

these dx than I did 5 years ago, but I do feel a little bit more comfortable

with what he needs. Our son is just a complete conundrum. He doesn't quite fit

the box for anything. He appears high functioning. Yet his social skills seem

to be deteriorating quickly, academically he's several years behind now. In 6th

grade, but reading at an end of 1st grade level. His IQ is borderline. Severe

mood swings - yet has never had a full meltdown at school. Has never been

aggressive with anyone outside of home. Very obsessive, adhd, some things we

can't even put a name to. The latest thing mentioned by his dr has been some

schizophrenia-like behaviors.

I'm not sure if this is the information that those asked were looking for.....

I'd love to also learn more from the families here that also have xyy. The xyy

support board I've belonged to for years has pretty much died. We had a lot of

parents that got the dx through prenatal genetic counseling. It seems their

children have grown up to not have any issues. Just a few of us have ongoing

problems.