Monday, July 28, 2008

International Fragile X Conference, Part Two

Thursday morning, we headed down to the conference area and had a danish and some coffee. There was a session about new treatments for Fragile X. Dr. Berry-Kravis gave an overview of the different possible treatment options including lithium, fenobam and others. I am amazed at the dedication of these professionals to the cause of Fragile X research. I still believe a "go-to" treatment for Fragile X is several years away, but Dr. Randi Hagerman said at the conference that she is not going to give up. Either she will find a cure soon, or she will retire very late, because she is determined to keep working on this. :)

Next, I went to a session called My Hands Can Write, My Fingers Can Tie. They discussed ways to get around the problems of low muscle tone, motor skills/planning and targeting the favored learning style of kids with FX, which is visual and experiential, versus sequential and auditory.

Some suggestions included using a vibrating pen, a slant board, picking up cotton balls with clothespins, rolling out dough or putty with a rolling pin, use of Etch a sketch, and lacing activities.

As with other conferences, they have recommended use of Handwriting Without Tears, but this time, they also recommended use of The TV teacher. See

After that, I went to Everything You Wanted to Know about FXTAS But Were Afraid to Ask. Paul and Randi Hagerman were the speakers. It was sort of funny because they passed out papers for people to write their questions on, "so they wouldn't have to stand up and ask". I thought it was cool, because they definitely understand the anxieties that carriers have. Anyway, the session was informative, and differentiated FXTAS symptoms with other neuropathy that carriers with FX can have.

After that, I met up with Eric and Kelly and my brother in law, Tony and we took the Metro to the Gateway Arch. It was raining when we left, but when we got to the arch, you could see water just running down the sides of the monument. It was pretty neat to see. We went in expecting to have to wait a long time to get to go up. But they told us it would only be ten minutes or so. They had a waiting area with some interesting things. Like a scale. Eric and Tony sat on opposite sides of the scale and Tony sent Eric straight up. It was rather funny. Next Kelly and I went on it, and we bobbed back and forth. I'd say we're pretty close to the same weight. I may weigh a bit more. I was just glad it didn't drop me down hard and send her in the air like Tony did.
This was inside the elevator. We thought it was like a time capsule, and not for someone with clausterphopia. Speaking of fears, Kelly didn't like the ride up very much. Nor did she like being up there. After the Arch, we went to a restaurant on the Landing called Joey B's. It was a pub that was featured on Rachel Ray's show, Tasty Travels, I believe. The food was good.

We headed back to the conference and attended one last session. The one I went to was called Making Sense of Your Child's Behavior: Problem Solving from an OT perspective. The biggest concept was to read your child's reaction to a situation and respond in a helpful way. I felt it was geared more for a clinician working with a child on specific therapy. I guess that's why it was called "Problem Solving from an OT perspective" Maybe I was just too tired to get much from it. The presenter was very nice. I just wasn't extremely attentive.

At some point, I saw Paula from Paula's Place. We didn't have a lot of time to talk since we were in between sessions. And I didn't see her again, but it was fun bumping into a familiar face.

In the evening, Eric and I went out by ourselves. We had planned to go to a Japanese steakhouse with friends John and Tracy, but they flaked on us, so we went to dinner alone. Except we didn't go to the Japanese steakhouse, but to a place called Jake's Steaks. It was very good. Afterward, we rode the Metro back to the Union Station and walked around outside for awhile. My sister called my cell phone and told me they saw us walking around, so we joined them at The Shed for a drink then called it a night.

More later...


Jen said...

Sounds interesting...wish I could have been there!

shoeaddict said...

And so what is (a) FXTAS? I'm so glad that you could go to this. How are the b oys when you are both away?

Umma said...

It sounds like some really great info! I'm looking forward to 2010.

Kristiem10 said...

It's in Detroit, MI in 2010.

Mark said...

Great pics!