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?
Gregg Bissonette wishes Quinn Merry Christmas
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11 months ago
7 comments:
I'm sorta guessing here but I think Matty had a new set of tubes every 6 months for the first two years and then another set every year after that. it seemed like one set would fall out and here would come those infections again. he had tubes until he was probably 7ish.
Rachel, my other fx'er, only had about 3 sets of tubes over her early years. it wasnt' quite as bad.
Punkin is 3 and we've had two sets now. It's a very fast procedure and a quick recovery (2-3 days). I think waking up from the surgery is the worst. But I noticed a difference in his hearing the next day.
Wow, I guess I didn't realize how many kids with FXS need the ear tubes. At least Quinn will have company. I'm glad to hear they worked so well, the other lion.
Ya, and the nice thing about having a diagnosis early was that even though Punkin was only one year old, his doctor knew he wouldn't just grow out of it or get better once winter passed. So he had them around his one year birthday and his two year birthday. They also took out his adenoids the second time. That took longer to heal and he had STINKY breath! =)
Kyle also had tubes when he was younger. He only had one set, but they worked miracles. Matt never had too many problems with ear infections, and so far (fingers crossed), Evan has had only two infections (and yes, the antibiotics cause chaos in the rash department). The connection between infections and low muscle tone is interesting---Kyle has the lowest muscle tone of the three.
That is interesting, Jen. Glad your son also had a good experience with ear tubes.
Holly has already had 1 ear infection, and two colds, we blamed daycare for her being so sick for so long, but maybe it was more then that. She is a bit constipated in general, so we didn't have a problem when she was on the antibiotics. I am sorry to hear that Quinn is sick,I have heard a lot of great things about the tubes, so I hope you are able to get them to work for you.
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