For this weeks Research Wednesday, I want to focus on another clinical trial currently taking place. STX209 is a little differnt type of drug than AFQ056 that I went over last week, but it has the same theories behind it. It is essentially a receptor agonist, classified as a "selective gamma amino butyric acid type B receptor agonist" or GABA-B for short. STX209 inhibits glutamate signaling in the brain and should, thereby, indirectly inhibit the excessive metabotropic glutamate receptor (mGluR) mediated protein...
Wednesday, May 25, 2011
Research Wednesday
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Monday, May 23, 2011
PECS Phase 1
As I talked about earlier, we are really pushing PECS with Ayden this summer. After our visit at the FX Clinic, and a nice chat with Dr Benore - we realized we were doing PECS a bit wrong. I realized I wasn't doing it "normal" per se; however, Dr Benore explained the actual logic behind PECS and why it worked the way it did. Mr Awesome and I quickly decided we needed a crash course in how to actually train Ayden to use PECS effectively and as a communication tool.
It was not difficult in the least to find...
Friday, May 20, 2011
Annual IEP
Yesterday marked our second IEP meeting with Ayden's ECSE classroom. I was completely stressed over the meeting, let me tell you! I'm not sure why I was stressed because we have an amazing team working with Ayden. I guess this stuff has just never been what I expected, and also this time we were prepared with what we wanted - very specifically prepared. We received a lot of input from the Fragile X clinic and know where we want to see Ayden, so I worried that maybe his school wouldn't have the same idea. ...
Wednesday, May 18, 2011
Research Wednesday
I've been thinking a lot about how I want to direct this blog. The big thing I have found as we jumped head-first into this journey is that there is not any one good place for information. So many websites have great information - but you have to piece a lot together or it's very basic. I want to help raise awareness of FX, help other families that are on this journey as well, and keep our friends/family updated as to Ayden's current progress. With those three things in mind, I'm going to start...
Tuesday, May 17, 2011
Oh! The Places You'll Go
With Ayden being newly-diagnosed with Autism on top of the FX diagnosis - I've been doing a lot of reading on autism which has of course involved numerous blogs. (I find parents to be an invaluable resource) With two spectrum disorders - nothing is going to be alike even if I do run across another child with both FX and autism, but I find a lot of comfort in reading about how others have overcome the difficulties that either or both of these disorders face.
I did read one blog yesterday that really hit close to home. ...
Saturday, May 14, 2011
Orchidometer
The following is a guest post by Mr Awesome, himself. (Ayden's Daddy)
Orchidometer. It sounds like a tool the Ghostbusters use. In reality here is what an orchidometer looks like:
What are these specialty worry beads used for? I discovered the answer during the doctor's checkup of our oldest son. First the doc pulls out a stethoscope, I'm familiar with that device, she listens to his heart. Thump thump. Next she pulls out a rubber...
Non-Verbal Autism Research
Great article on the Autism Speaks blog about research in non-verbal children. I think this small section of the article hits the nail on the head for me....I can't even begin to say how many times I've felt this way, especially after seeing those standardized tests put Ayden at his normal age range for cognitive skills!
An estimated 30% of individuals living with autism are functionally non-verbal, yet very little research effort was directed toward helping this group communicate their wants and needs. The inability...
Clinic Visit - Day 2
...and onto day two!
Our morning started with the speech language pathologist. (Who, by the way, was FANTASTIC). Ayden was already in a mood when we got there. I think the past two days were wearing on him after being in the car for 7 hours, sleeping in a new place, and the previous day's evaluations. He did get a good night sleep, but we could tell early on he wasn't doing well.
The SLP spoke with us about his history, his current IEP, and basically where Ayden was at overall. We then...
Friday, May 13, 2011
Clinic Visit - Day 1
It's difficult to know where to begin this, as we were just given so much information. Those that have been through that first clinic visit I'm sure know the feeling! I'm glad I had a good idea of what was happening as far as the standardized testing and such ahead of time. We've been through all of that before, and it really wasn't much different.
Day one started at 8 am. We met with Dr Delahunty and Dr Benore for a better part of the morning; though not at the same time. We were in a one-way...
Clinic Visit
I'm going to put this as a placeholder for now, but want everyone to know I'll be posting sometime in the next few days about our clinic visit (though hopefully tonight!). We're still kind of recovering, and as you can see from the posts below I had some other things to post about as well!&nbs...
MI Fragile Clinic Opens!
This is a direct copy of the email I received regarding the opening of the MI Fragile X Clinic. We are SO excited that we now have an in-state clinic (especially after driving 5.5 hours this week to get to one!)
Although it is still going through the process to be an official, NFXF-sanctioned clinic (see more at http://www.fragilex.org/html/clinics.htm) and part of the Fragile X Clinical & Research Consortium, the Fragile X Clinic at the University of Michigan is open for business! An exciting time for families...
A Special Surprise
Just after Ayden was diagnosed, I ran across a website that was offering a merit-based iPad giveaway. It was a very open-ended entry in that we were asked to send an email (or leave a comment) stating what and why you would use an iPad for. I entered the contest with a short email telling a little about Fragile X, what our daily struggles are especially with language/communiction, how much Ayden loves his iTouch, and how beneficial it would be for him to have one to help with communication.
Ayden was chosen...
Sunday, May 8, 2011
Mother's Day
For all the moms out there who had to wait longer to hear a first word (or are still waiting), who spent more time in doctors offices with their child than on playdates, who endure the countless 'bad days' and the stares from other people...For the moms whose child's first friend was their therapist...For the moms who face Fragile X everyday...this is for you. - Author Unknown
Thank you to all those that helped to make this video. I know Holly and Eric, but I am sure there are others. What a wonderful gif...
Monday, May 2, 2011
...and just like that we're into May!
It's a busy month for us here, but most of it will be condensed into the next two weeks or so. Next week, we will be leaving Issac with Auntie Cole and Uncle Jon while we take Ayden to the Children's Hospital in Akron, Ohio. It's difficult to think of leaving my baby for that long, but of course he'll be great. I doubt he'll even notice we're gone!
As for Ayden, I'm sure he'll enjoy the time with Mom and Dad including our roof-top hotel pool. Luckily, these evaluations won't be...