Wednesday, September 10, 2008

Our trip to the MIND Institute!!!

We had a wonderful experience but it was very busy. We arrived on Sunday night, June 29 and checked into the Ronald McDonald House at UC Davis. We have stayed there a few times before and it is always wonderful. They always make us feel welcome and comfortable. Usually, at check in, each of the kids gets to choose a toy, book and blanket to keep. This time, they got to choose a toy and a blanket. I was so pleased with David and Nathan! They politely turned down the blanket offer because they decided they have enough blankets and they didn't need a new one! How great is that! They each chose a toy and then they were able to choose a few movies and video games to "rent" while we were there. They thought that was the best thing ever!

Our Schedule:

Monday June 30

9-10am Welcome and Consent Wright Family
9:15-11:15am NTRI-TS: Cognitive Testing David
10-11am Clinical History Update Mr & Mrs Wright
12:15 Check-in to walk to IRC Wright Family
12:30-1:30pm NTRI-TS: Mock MRI David
1:30-3:30pm NTRI-TS: MRI Scan David
4-5pm Parent Interview (Vineland) Tiffany
re:David & Jonathan

Tuesday July 1

9-10am NTRI-TS: Neuropsychological Tiffany
10-11am Medical History Tiffany
11-11:30am CATSYS Balance & Tremor Tiffany
11-11:30am Eyetracking David
12:45pm Check-in Tiffany
1-3pm NTRI-TS: Cognitive Testing Tiffany
3:15-4pm NTRI-TS: Mock MRI Tiffany
4-6pm NTRI-TS: MRI Scan Tiffany

Wednesday July 2

9am-12pm Baby Developmental Testing Jonathan
and Eyetracking
1-3pm Clinical Medical Evaluation Tiffany, David & Jonathan
3-3:20pm Blood Draw Tiffany, David & Jonathan

So... David's MRI was cancelled because Louise, the geneticist, was doing the clinical history update with Doug and I and she realized he was scheduled for an MRI and was adamant that they shouldn't even try it with him because she felt it would taint his whole visit as this was scheduled on the first day. So she went across to talk to the guy who was heading that research study and informed him that David would not be doing the MRI per her decision. Whatever. That was fine with us. He would never had done it anyway but I figured there wasn't any harm in trying. So that left a huge chunk of our day blank. Then I went for the parent interview and was so tired cuase I didn't get a nap that I started falling asleep during that so we decided to finish it the next day. David's cognitive testing went ok but he got bored about halfway through and wouldn't finish it which they said was fine. It's research and they just take whatever they can get. They said he did good up to that point so that was good. Then he and Nathan just got to go play while we finished up what we had to do. They have volunteers and interns who take the kids and play on the playground or let them watch movies or whatever. They have so much for them to do there and of course it didn't even occur to me to take pics of things! Sorry! So Day 1 was pretty uneventful, not a whole lot of anything to report.

Day 2: David's only thing was the eyetracking thing and Doug said he finished that in about 10 minutes. As you can see from the schedule, the rest of the day was all me so Doug took all 3 kids to the zoo in Sacramento which he said was a major disappointment. Thank goodness it was cheap! LOL! He did get some good pics and videos so that was cool.

My stuff wasn't too bad. The neuropsych testing wasn't bad and I've watched David do all the same stuff before. I had to take Jonathan with me though for something. I can't remember. OH! I know what happened! They cancelled my 9am appt that morning for the neurpsych testing and moved it to 8am on Wednesday and we had to check out of Ronald McDonald house between 8am-11am and I was in appts that whole morning so Doug had to do that and I had to take JJ cause he had an appt. Well they didn't have anyone to take him for that first hour before his testing started so I had him with me while we were doing it. She said I was doing very well considering I had a baby to deal with and stuff. I'm interested to see how all that turns out. Lol. So on Tuesday, they changed my morning stuff and we finished the parent interview from Monday and then I had all my other stuff to do. I only saw Doug and the kids for about 5 minutes before they left. The balance and tremor scale was interesting for me because I know my dad has done a lot of stuff with regard to the related disorder FXTAS (Fragile X-related Tremor/Ataxia Syndrome) which they see in mostly adult male carriers 50+ but they do see it in some females carriers as well.

The MRI was not bad. They did the cognitive testing first and it was no big deal and then they did the same tests while I was in the MRI and then they did some MRI images while I was just laying there. They had me pick out a movie that I could watch but I fell asleep. I kept falling asleep during the "games" that they had me play for the cognitive part too and I felt really bad but they said they got some good images and it was all good. It was the end of the day and I had not had much of a break at all so they said it was fine and they take what they can get. They gave me a disc with my MRI images too.

Wednesday, I went in at 8am with JJ and started the cognitive testing. At 9am, we took JJ out and gave him over to the two ladies who were doing the eyetracking study then when I finished with my thing, I met them out in the hall and we moved on to JJ's developmental testing. He did great, especially cause he was so tired! They said he did perfect on the eyetracking. They said he was probably the best they've ever done it with and that they wished they all were as good and easy and Jonathan! Then we met with Dr. Hagerman.

She started with me. We talked about my weight gain, emotional issues, medications, Fibromyalgia, stress fracture, etc. She checked my reflexes and lungs and weight and height and blood pressure then checked a few other things. Doug stood there laughing because he said it was jsut like a field sobriety test! She had me stand in front of her and touch my finger to her finger then to my nose and then to her other finger and then my nose and so on. Then I had to try to walk heel to toe in a straight line. I apparently would not have passed THAT FST according to Doug! LOL! I couldn't walk a straight line like that to save my life! LOL! We talked about goals for me for losing weight to help with pain management. She definitely thinks that if I can lose the extra 100 lbs or so that I'm carrying around right now that it would go a long way to help me feel better pain-wise.

Then we did Jonathan and he was so funny cause he did not want to have her touch him at all. She checked his ears, eyes, nose, throat, lungs, and measured the size of his ears (length and width) and how much they "cupped" and then measured the size of his testicles. (males tent to have enlarged testicles. Let's just say that David's are barely bigger now than they were when he was born!!!! Not joke!) She said Jonathan was healthy and that she was really impressed with how well he is doing. We talked about where he is developmentally and then we talked about some of our concerns. I expressed concern that we are starting to see some signs of anxiety in him so we talked about that a lot. One of the medications they put David on a while back is called Minocycline. It's an antibiotic but they have seen some really good results with it in boys as a targetted med for anxiety and adhd so if it works the way they hope it will then we could possibly cut out two meds and replace both with this one. She said they have also had some good results in baby mice with fragile x with it. She said that with Fragile X, a big part of the problem is that the brain synapses are misfiring and not connecting with each other properly and when the baby mice were treated with this medication, it repaired the brain synapses completely and reversed all signs of fragile x so she said it is something we might consider trying as Jonathan gets a little closer to 2 or 3 years old and if his anxiety gets bad enough to try it. She said the only negative side effect they've seen is yellowing of the adult teeth but she said that if it repairs the whole problem of fragile x then you can just cap the adult teeth and no one would ever know any different! I'm interested to see how this research pans out in the future.

David. What can I say. He let her check his ears and eyes and nose and chest and stuff. She was even able to get a somewhat decent measure of his ears but then came the testicles. You try telling a 9 year old with Fragile X who is just learning about privacy and keeping private parts covered that he needs to drop his drawers and let the lady dr take a look at his privates! LOL! He was not having that at all! She was able to get a slight peek but not a very good look at all. She said based on what she could tell that he's not in puberty yet because the testicles will get larger when he starts purberty and they haven't done that yet. Then we talked about a lot of issues. The possible seizures he may have had or may still be having. She ordered and EEG which was already scheduled. I came home from vacation to a letter with his appointment and everything for August 14 up at UC Davis medical center. I had to change the date cause the 14th is the first day of school so he is going up for that on August 28th. Not sure how that will go but we'll see. So then we talked medications, Dr Barnett, anxiety, and other issues such as his apparent rage that has emerged more recently. They have 2 new medication trials beginning in the fall so we will be heading back there in October probably to start him in on those studies and see if either of those meds helps him at all. Both are for anxiety and adhd symptoms which are his two major issues. If his anxiety is in control then he is pretty well under control. I'm interested and excited for those. We'll see from there.

After that we discussed what bloodwork was going to be done for each of us. Jonathan, they are just finishing the fragile x testing from last year because he was so small, they couldn't take all the blood they needed for all the tests necessary so they had to do it in two phases. They tested David for a number of things including diabetes, and some other stuff. I can't remember. They are testing my thyroid, and various other hormone levels and such. We'll see what they come back with. They want to see if I am starting to have early menopause which she doesn't think so but just wants to be sure. So that was that. We went for the blood draw. I went first, then Jonathan and then David. Jonathan bled well for once and they got it on the first poke. Then I took him out to comfort him and Doug went in with David. David apparently yelled during the blood draw, "I don't wanna die!!!" LOL! Poor guy!

So that's the gist of our trip to the MIND. We'll be going back in August and then again in October or around there.


Melissa said...

Wow--busy schedule! I didn't know you guys went up there again. Sounds like it went pretty well. Give all the boys kisses from us!

Vicki Davis said...

I know you posted this a while ago, but I wondered a few things..

1. How did the other two visits in August and october go, i don;t think i saw another post about them.

2. Are you a pre or full mutation carrier. I went to the MIND Twice so far with holly my daughter, and will be going again sometime in January to start the 10 month Baby Study, she did the Minocycline Trial, and the Eye Tracking, but they didn;t do any MRI or neurological Testing on me, which i would have actually been interested in doing and wondered which study you were in, or why they did so much testing (a whole day) on just you. Did you get the results for everything? I have found that they are not forthcoming with results, and I had to wait several months, and only just got Holly's blood test results a week ago after several emails, and waiting since August.

Anyways.. it is good to talk to you, are you in California? Did you drive there? We are in the SF Bay Area, so we only drove up for the day.