A short one.
Henry was taken to see a neurologist a while ago in the hopes of figuring out why he's so awful at sleeping, whether it's in going to sleep or staying asleep. Right now, we dose him with melatonin so that he'll fall asleep within a half-hour; before the melatonin, it was a nightly battle of 1½ to 2 hours to get him settled down enough to fall asleep.
Every. Night.
The reason: he was just hyper and could not calm down. We got a suggestion from our FX support group members that a common manifestation for kids with FXS is a non-stop production of cortisol, which puts them physically in a constant fight-or-flight mode. To combat that, we were given the suggestion of giving him melatonin supplements to counteract the overproduction of cortisol.
The first night we gave it to him was a miracle. He went to sleep within a half hour, and we haven't looked back since. A bottle of melatonin liquid is a staple now, and we've come dangerously close to running out a few times. That meant dropping everything and going to buy more, because, like beer, we shall not run out!
The neurologist was unable to examine him because, well, as anyone who knows Henry knows, he is not comfortable around strangers. And it's magnified when he's in a medical facility, because as far as he's concerned, only Bad Things have happened at medical facilities. The neurologist recommended we submit him to a sleep study through Children's Hospital.
Okay, fine.
Tonight was his appointment, and tonight was the night when the inner beast was unleashed.
Since I had class tonight, Lori was to take him in just before bedtime and spend the night in the observation lab. Henry apparently went Incredible Hulk. Because what the neurologist failed to tell us was that the study required all kinds of sensors and wires to be stuck on, around, and even in him (up his nose).
Just hearing that, I could tell you that it was not going to happen. He reacts to hair cuts like we're killing him. It took all of my strength and dexterity to restrain him for a mere hair cut. And yes, I had to restrain him.
Unfortunately, Lori took the brunt of Henry's explosion. Scratches, bites, punches, and even a fistful of hair ripped out. Lori said that she had never seen an expression of contorted terror on Henry's face like that before, or the kind of back arching and physical contortions he was in to try to get away.
Then the tech offered to try again.
Needless to say, they came home. I knew something was wrong when I saw Lori's car in the garage when I pulled into the driveway coming home from class. She had just gotten Henry to sleep -- calmly and in his own bed -- when I came in the house.
So the moral of this story is this.
To all of my friends who are in the medical field and those studying to go into the medical field, please remember your street smarts on top of the book smarts. Don't treat kids with special needs like a by-the-book numbers game, because unfortunately, we've run into more doctors and nurses ill-equipped to handle special-needs kids than we could have reasonably expected.
I mean, isn't it a thing in one of their classes or something? If not, shouldn't it be? Even if it's just a 10-minute Powerpoint titled "Don't Treat Parents of Special Needs Kids Like Morons Who Don't Know What They're Talking About, They Know Their Kid Better Than We Will?"
Slide 1: should you treat your special-needs patient's parents like uneducated fools?
Slide 2: no.
End of presentation
The neurologist was so entrenched in book knowledge that she apparently had no ability to extrapolate or think beyond the procedure. I get that there are liability issues, but come on. If the kid wasn't going to let you near him, let alone touch him, why would you think that hooking him up to what amounted to a transmission flush machine would be successful?
In the past, when Henry got another ear infection, we went to an urgent care clinic and I told the attending physician what his Dx was to be, and what needed to be prescribed. With the way I presented the information to him, he asked if I was a doctor.
No, I'm a parent who is also a troubleshooter by profession so I know how to present the data of a problem in order to seek resolution. Whether it's a computer or a human body, the technique is the same. Ask the right questions, think analytically, think critically.
On top of the ENT doctor who got annoyed that Henry was terrified of him, the med-student kids who asked inane and irrelevant questions of us while Henry was coming down with bronchial pneumonia, and the pediatric surgeon who decided to hold class for his med student kids in our room while Henry was trying to sleep, please, please, please remember that your patients are people, not chapters in a book.
And just because you may have seen countless similar cases in the 20, 30, 40 years you've done this, not all cases will have the same outcomes. Don't get lazy.
