Thanks to FXSMom!
Author: Melissa
Two quick notes.
A small taste of FX?
We went shopping today. Our first stop was the craft store for supplies for Valentine’s Day cards that Monkey needs to bring to school this week. Duhdee put Monkey in one of the tiny carts and they roamed the store looking for the items on my list while I more methodically searched up and down the aisles.
I was able to find most of the stuff pretty quickly but I hadn’t yet decided whether to use cardstock or foam as the base of the card. I had been hoping to find pre-cut foam hearts but I couldn’t find anything in the right size so we were now wandering aimlessly.
Chemical Signals Go Awry in FX Syndrome
Chemical Signals Go Awry in Fragile X Syndrome
Mouse study shows drugs that target the miscommunication may help
MONDAY, Jan. 14 (HealthDay News) — New information about how brain cells are affected in Fragile X syndrome — the most common cause of inherited mental retardation — has been uncovered.
In the study, researchers at the University of Texas Southwestern Medical Center at Dallas examined mice to see how Fragile X syndrome affects communication between cells in the hippocampus, a part of the brain involved in learning and memory. The team found that two different chemical signals go awry in Fragile X syndrome. This suggests that drugs that interact with these chemical signals may offer a treatment.
Fragile X research news
Seaside Therapeutics Awards $4.5 Million Collaborative Research Contract to Vanderbilt University Medical Center
Funding supports development of novel therapeutics for fragile X syndrome
CAMBRIDGE, Mass.–(BUSINESS WIRE)–Seaside Therapeutics announced today the award of a $4.5 million collaborative research contract to Vanderbilt University Medical Center to discover novel compounds to potentially suppress the manifestations of fragile X syndrome. Fragile X syndrome is the most common inherited disorder of brain development and the most common known genetic cause of autism. Individuals with fragile X can suffer from impaired cognitive function, developmental delay, attention deficit and hyperactivity, anxiety, obsessive-compulsive and autistic behaviors.
A play date.
Yesterday Monkey had a play date with two of his classmates (twins.) Duhdee and I chatted with their mom and dad while we supervised the play. I have to say this is one of those things that really spikes my anxiety. It seems so simple, just go and let the kids play, but nothing is ever simple when FX is involved.
He’s in school but WE get the homework.
There is just so much paperwork that one family can take and we’re only dealing with one kid here! I can’t imagine what parents of multiple kids deal with.
Right now we have a spreadsheet in the hall outside Monkey’s door tracking his sleep habits. What time he goes to bed, what time(s) he wakes up during the night and what time he gets up for the day. We have a place for notes as well to include information like “no melatonin” or “had to be woken up”, etc.
Therapy starts today.
Since our visit last week with the psychologist we’ve noticed definite improvement in the school transition. Last Friday he didn’t cry at all when we left though he was whining and today he was fine as soon as I got him to the sink for his water play. We still have a ways to go but it’s not feeling as hopeless as before Christmas break. Here is hoping for continued improvement on that front.
We won’t get in to see the psychiatrist until March…quite a long way to go with interrupted sleep but we’ll manage, I’m sure!
Back to the FX clinic…
School has been such a big issue for us for the last two months and Monkey is also having some sleep issues so we made a couple of appointments to talk to the experts.
Yesterday, we visited with Dr. G who is a psychologist. She is going to be helping us with the school problem. The appointment was to give her a thorough explanation of the issues and answer her questions. Monkey was there hanging out while we talked. He was trying to interact with the Dr. without looking at her or actually interacting…it was really cute. He kept putting his markers on the table she was sitting at and rolling them in her direction so she couldn’t write, lol. He was pretty persistent but did not make eye contact. Read more