OK, here's a fun little sample of life with a fragile X child: One of the symptoms of Fragile X is low muscle tone. This has all kinds of implications: delayed motor skills, delayed vocalization (your voice is controlled by muscles, though it's not clear how much of the delay is due to cognitive deficits and how much is due to muscle tone issues), and more ear infections.
Why would low muscle tone cause more ear infections? Well, it turns out that the tube that connects your ear to your nose (so pressure can be equalized) is opened and closed by some very small muscles. Those muscles have the same low tone problem that other muscles do. So that passage isn't opened or closed as well as it ought to be, and that means it's easier for bacteria to get a foothold in there.
And more ear infections means more diarrhea. Why is that? Because the antibiotics prescribed to kill the bacteria that cause the ear infections also kill the ecosystem in the large intestine, causing diarrhea, diaper rash, crying, stress at his school, parental sleeplessness, relationship stress, etc.
Quinn just got back from the audiologist (another 3 hour chunk out of our workdays, this one taken valiantly by my wife), and after two ten-day courses of antibiotics, still has fluid in his ears and negative ear drum pressure. This means he probably needs tubes in is ears (small tubes that put a hole in his eardrum that allow the pressure to equalize and the fluid to drain). This will probably be a big relief to Quinn, because it should lessen his ear annoyance. Indeed, we've heard anecdotal evidence that this can improve sleep issues dramatically. But it means surgery, general anesthesia, a raft of bills, possibly a round of dealing with the insurance company, more missed work, etc.
Oh, and he has to go back to the audiologist in 3 months because they can't do their experiments when he has fluid in his ears. Add another 3 hours of daytime occupation to one of our calendars.
Is all parenting like this?
Just Brody - It is amazing to see the progress that he has made over the last two years. While we were there last visit, he put on his shoes and went to the restroom......
3 months ago