Off tomorrow for ADHD genetics study...

[gcvmom]

at a leading university here. Our family participated about five years ago, so this is a follow up. I don't remember how many years this study entails. They are doing me and difficult child 2 tomorrow, then next week husband and difficult child 2 go in (although I'll have to tag along since husband doesn't remember medical history very well at all). There's a bunch of questionnaires we fill out, there's an interview, an EEG for the difficult child's, as well as a blood draw for all of us. easy child doesn't have to participate since she never had an ADHD diagnosis. I'm only in it because of my genetic contribution to the picture Same for husband, although he gets the EEG since he was told he had ADHD a while back (although I think he's a bit more complicated than that...).

Anywho, the kids are excited because we get paid $30 each for participating. And I'm happy to be helping a large research study.

Downside is that we have to get to this place (which is 50 miles away) by 8:30am through rush-hour traffic in L.A. NOT looking forward to dragging difficult child 2... a.k.a. Rip van Winkle out of bed at that hour. I'll be lucky to get his comatose body out the front door!

I better get the coffee pot programmed for the morning!

 

[Wiped Out]

I think it's great you are participating in the study! Wishing you luck getting difficult child up and also hoping you get through all of that traffic with-o a hitch!

 

[smallworld]

Just curious -- what happens when the diagnosis changes from ADHD to something else?

 

[TerryJ2]

Awesome.

Gosh, you were up at 2:30 a.m.? You'll get some sleep tonight!

 

[totoro]

Good for you!!! I am a big advocate and believer in doing whatever we can to help with research.

We did a genetic research study about 2 years ago now with the Papalos'. For BiPolar (BP). Mostly for me and K, but they took saliva from all of us and interviewed me for hours.

We will never know the results and the study was I think 3 years. But it will help with this theory hopefully!

Good luck!!!

 

[gcvmom]

Well, we got out of the house okay. Hit the freeway by 6:45am, got up to UCLA by 8am. Not bad.

difficult child 2 did pretty well for the first hour or two of testing, but then he hit a huge wall, and when I came out of my session at 12:30, he was zonked and snoring on the couch in the lobby, poor guy!

Turns out I was scheduled for an EEG as well (my first... I'll have to post a picture of my lovely little cap... I look like I'm there for a frost or weave).

They gave us each a $7 voucher for lunch at the cafeteria -- which was GREAT. We did have to pay $11 for parking, but that was offset by the $50 a piece we were paid for our time at the end of the day.

To answer SW's question about a diagnosis change, I'm not sure exactly. I do know that with regard to the EEG, one of the evaluators said she made sure the EEG tech knew about difficult child 2's diagnosis so that when they did the write up for him and some of his brain waves didn't fit neatly into a typical ADHD pattern we would understand why and not think that something was wrong with him (besides what's wrong with him ). Part of my interview was an extensive recap of difficult child 2's last 5 years since his first study there, including the various medications, responses, symptoms, etc. he's experienced during that time.

They did a lot more testing on me than they did last time. The WAIS III, I believe is what they used. Some was pretty easy, some was progressively harder. The EEG tests were done after lunch and with my insufficient sleep ( ) I felt like I was struggling, although I seemed to score pretty well on some of the subtests. Whatever.

We go back next week for husband and difficult child 1, and I'll tag along so that I can help with the medical history for everyone since husband tends to freeze whenever someone starts asking him questions like that.

They will send us a copy of their report that summarizes the findings for everyone -- although they do not reveal any of the blood test genetics. I'd be fascinated to know how our genes "fit" into the picture.

We wrapped up by 4:30pm. Rather than fight traffic going home, difficult child 2 and I walked to a theater in Westwood and saw "Ponyo". The animation and artwork were impressive. difficult child 2 liked the story, but then he likes most of the movies by Miyazaki.

Overall, it was a really nice day with difficult child 2. He is such a nice kid... loves his mom and is not afraid to show it... holds my hand when we walk sometimes, very conversational, laughing and making jokes. Some days I wish all my kids were more like him in this way. But again, we had a really good day today.

 

[TerryJ2]

Very interesting! The EEG sounds a bit like the neurofeedback I used to do for my headaches. They always apologize for my new, gooey hairdo.
Why don't they reveal the genetic blood test results? Maybe they don't want to influence anyone if one of the kids shows up with-a pattern but no symptoms yet?

 

[gcvmom]

Terry, I think it's because everyone becomes a "number" in the study to protect privacy. They aren't there to diagnose people, merely to gather the data and analyze it.

 

[TerryJ2]

Well, let us know when and where the data is published. I'd rather read it in a medication journal than on the news, just to make sure I get accurate info.
Thanks!

 

[gcvmom]

Oh, I will! The study is probably going to wrap up in the next year or so. They told husband that they've run out of funding and most of the research is nearing a conclusion.