Are 90% of children affected by Fragile X misdiagnosed?
Archive for November, 2008
This blog is on hiatus until Monday. Have a great Thanksgiving.
I’m not too sure about my ability to post this week. I don’t have much time to even write this.
But real fast: We had Sonny’s doctor appointment on Friday. Approached with the problem of Sonny’s daily mid-morning collapse, she simply altered the times we give him his meds. Now he’ll get them at 7:00 a.m. and at 11:00 a.m. That should carry him through the school day — especially since we’re also increasing the dosage of methylin up to 7 mg a day, up from 5 mg. We started this new regimen this weekend, and while I didn’t work with Sonny as much as I should have (as usual), it was clear he was focused and calm, and wasn’t once plagued by that scary overwhelming giddiness. Hopefully this will be a good (though short) week at school.
We had Sonny’s parent-teacher conference the other day. The big takeaway: Sonny is unteachable between 11:30 and 12:15 each day. His morning medication has worn off, and his afternoon dosage has not yet been given to him by the school nurse. The result is pure, unadulterated Sonny. Normally a happy child, Sonny without meds is quickly overtaken with uncontrollable giddiness. He can’t stop laughing. The best his teachers can do is put him somewhere away from the others and wait for the giggles to subside — and they rarely do before he gets his afternoon pills.
We have a psychologist appointment this afternoon. I think it’s a good bet we’ll be bringing this up.
Even when he is fully medicated, they still have to keep Sonny away from his friend Anand, who also has Fragile X. Keeping the two of them separated is a neat trick — the class only has four kids — but the teachers learned early on that Sonny + Anand = Runaway Silliness. They feed off each other in the worst way, exchanging tics like baseball cards. The two of them would be happy to spend the day howling at each other like coyote pups.
They’ve got him doing independent work for up to twenty minutes at a time — a fact I found absolutely unbelievable, and which turned out not to be entirely true. It’s more like four consecutive sessions of five minutes each, with interceding moments of steering and prompting and “good job!” That’s a lot closer to what we see at home. The idea that Sonny might sit entirely by himself for twenty solid minutes, doing various schoolwork tasks, is as foreign an idea as Sonny going out to the garage to build a soapbox racer.
When he’s on task, Sonny is really quite teachable. Math is chugging along… well, crawling along, but at least there’s forward movement. He can add two numbers to up to a total of seven, and he can do it consistently, which is huge. Writing remains problematic — he has a hard time keeping his letters between the lines, or even on the paper, and then he gets upset because he’s been sloppy. But just yesterday he sent home the clearest schoolwork he’s ever produced, so perhaps there’s been progress there, too.
The teacher told us about a great little exercise we can use with Sonny to increase reading comprehension. She gives him a box full of small toys — or manipulatives, as they say in the special ed game. She also gives him a sheet with some simple instructions: 1) Pick up the book. 2) Make the frog hop. 3) Roll the red car. 4) Write your name with the brown crayon. And so on, with maybe seven small instructions in all. Sonny must read, process, and follow through on these instructions with no outside assistance.
So far he can do it, although they keep this exercise on a very simple level — the brown crayon is the only crayon, the frog is the only animal in the box, etc. As he improves, they’ll increase the difficulty by, for example, throwing in crayons of various colors, so he’ll have to figure out which one he needs. Neat, simple, and easily duplicated at home. I know what we’ll be trying this cold, cold weekend.
I have been wondering for a while about your insurance situation. Is Medicaid not available for Sonny in your state? I know these things differ from state to state, and I guess I am curious about yours… I guess the staggering cost of keeping your son healthy and happy just makes me sort of speechless. I don’t mean to be nosy, I just don’t understand how the system can very so widely from state to state. It makes me really angry. I mean, if you had Medicaid, Sonny’s doctor could refer you to a FX Clinic about meds and it wouldn’t cost you anything.
Hmm, let’s just do a Google search on Connecticut and Medicaid and eligibility…
Ah, here we are. The very first sentence: “The Department provides medical assistance to low income persons and people who could otherwise support themselves if not for the fact that they have excessive health care costs.”
I don’t think I currently fit into either of those categories. My income is not particularly low. I wouldn’t call myself wealthy, mind you, but when I look at my pay stub, I don’t think I am the sort of person who needs government assistance. Nor do I consider Sonny’s medical costs to be excessive. I wish they were cheaper — I don’t enjoy spending hundreds of dollars a month on pills — but we’ve been paying them just fine and still have money left over to put in the bank.
It helps that my wife and I are perhaps the most frugal people I know. Seriously, we should write a book. 90% of my kids’ toys and clothes come from yard sales and Freecycle. We pay off our credit cards every month without hesitation — there is no way I’m going to pay those companies interest. We go out to eat maybe four times a year, and that is the full extent of our jet-setting: We absolutely never go to movies or out to clubs or bars. We have Netflix (one movie at a time, the least expensive program), we have reading (my wife works at a library; we do not buy books), and I have my love of puzzles. And the kids themselves keep us plenty busy. Honestly, even if I wanted to spend a lot more money, I’m not sure when I’d find time to do it.
Oh, I do travel a few times each year — that’s my big luxury. And by big I mean all my trips combined probably take $3,000 tops out of the bank account, annually. I’m no more a big spender on the road than I am at home.
Plus I have generous parents who will step in at a moment’s notice, waving their checkbook.
So I can’t say I find Sonny’s medical costs to be staggering. They do prevent us from making an extra payment on our mortgage each month, which I would otherwise like to do. That’s about the worst you can say about it.
It’s great that the government will support low-income people and those with excessive medical costs, but for the nonce, that is not me. It’s not a pride thing. I’ve been unemployed for long stretches, and during those bad times, my kids were on the state Husky program, my wife and I were on Medicaid (or something similar), and my whole family collected food stamps. Oh yeah, we have ample experience at being poor — enough that I fully appreciate it now that we are not.
I suspect if I filled out the applications and made a big fuss how my child is MENTALLY RETARDED, the state would throw money at me. But they probably shouldn’t. There are a lot of people who are a lot worse off. I am happy to pass the cup down to them without taking a big sip for myself.
Powerful antipsychotic medicines are being used far too cavalierly in children, and federal drug regulators must do more to warn doctors of their substantial risks, a panel of federal drug experts said Tuesday…
Risperdal is not approved for attention deficit problems, and its risks — which include substantial weight gain, metabolic disorders and muscular tics that can be permanent — are too profound to justify its use in treating such disorders, panel members said.
So we’re bailing out the financial companies, and we’re going to bail out the automotive industries, but WHEN WILL THE GOVERNMENT BAIL OUT PARENTS WHO HAVE TO WATCH THEIR KIDS ON TWO HOURS OF SLEEP? If that isn’t worthy of a whole new government agency, I don’t know what is. Parents who have slept only two hours the previous night can call a special number, and within fifteen minutes, two Special Ops Babysitters appear at the door. That’s a waste of taxpayer money I could really get behind.
But, no, with the wife at her part-time job, I had to do the long haul by myself. The kids, to compensate for my lack of energy, were completely insane. Jumping on the sofa, jumping on each other, running back and forth, playing with every toy simultaneously. I finally slammed Wizard of Oz into the DVD player and commanded them to watch television. I made the only dinner I was capable of: Heating up a bunch of frozen foods. Tyson makes these processed chicken patties — we call them “Tyson Chicken Thingies” — and they are a godsend. They actually taste pretty good and anyone with a single functioning brain cell can make them, as I proved last night.
I was checking the clock every three minutes to see whether I could send my kids to bed yet, which is an excellent way to slow time down to an inchworm’s crawl. I finally gave up and let them roughhouse to their heart’s content, and that was a mistake because when it came time to give Sonny his evening dose of medicine, he was too giddy and overwhelmed to swallow it. He was laughing, he was crying, he was doing both at the same time, and he could not get the Depakote-laced milk down his throat. Down his chin, yes. Down his clothes, oh yes. I gave up and put him in bed twenty minutes early.
I told Peanut she had to find something to do that involved sitting in one place, and she dug up Rush Hour, a solitaire puzzle game she turns to once in a while. Thus absorbed, peace descended on the X-Dad household. Half an hour later, Peanut was in bed. Three minutes after that, I was asleep.
Until my dog woke me up two hours later. I had forgotten to walk him.
You’ll excuse me if this entry fades out into incompreheahdkgpjwility. I’ve been awake since two in the morning. That’s about when I decided to drive myself to the emergency room. If my kids had been awake, and if they had asked why I was rolling around on the floor, I would have told them I had a “bellyache.” Technically, this was true. More accurately, it felt like I was moments away from reenacting John Hurt’s big scene in Alien. Yes, I realize that’s the go-to pop-culture reference to describe stomach pain, but I’m too bleary eyed to come up with anything original.
Two a.m. on a Monday night is definitely the right time to visit the emergency room. Five minutes after I walked through the doors, I was in a cotton nightgown, lying on a gurney, waiting for the doctor. He turned out to be a very nice man, not at all cranky that it was his turn to take this horrendous graveyard shift.
I’ll make a long story short: They did a number of tests, one of which came back with questionable results. So by five a.m. I was looking at the inside of a CAT scan machine, and that is not how I envisioned starting off my day. End result: I have kidney stones. They are small, which is good news. And the initial waves of pain, the ones that sent me to the hospital, have faded, which is even better news. My instructions now are to drink water practically non-stop and to make use of a little sieve, in hopes of catching the stone. Considering Sonny and his many accidents, I didn’t think my life could get any more pee-intensive. Shows what I know.
I remember my report cards. They were never particularly good, but at least they were small in terms of square footage. In elementary school they were slightly larger than a greeting card. By the time I got to high school, it had been reduced to the size of a gas bill — a few dot-matrix words on a small piece of flimsy.
Sonny’s report card is sixteen pages long.
They don’t dare rate Sonny with anything as cruel as letter grades. Instead, they use… um, different letter grades. Instead of A, B, and C, we face an alphabet soup of LP, NI, S, and O. The S stands for satisfactory, and such is my need for good news that I went searching for as many S’s as I could find. A sampling:
– Sonny can count a mixture of pennies and dimes. Maybe he’s satisfactory at this at school, but judging by his work at home, I’m pretty surprised this rates an S. I’d have given it a DWDI: Doesn’t wanna do it.
– Sonny can add single digits with sums up to ten using manipulatives or touch points. Except then there’s a note that says he can only add up to seven. So how is he satisfactory on sums up to 10? Well, whatever. I’m still over the moon that he’s adding things up at all.
– Sonny can tell time to five minute intervals. News to me.
– Sonny has demonstrated an improvement in social skills. Considering the number of handshakes he gives out in a single day, I believe it.
– In school-based situations, Sonny will learn to demonstrate socially acceptable eye contact. Eye contact is a major Fragile X bugaboo, so I’m surprised to see him earn an S here. Good for him.
– Demonstrate an improvement in clarity of speech skills. I guess he has improved at this, but as far as I’m concerned he has a long way to go. Just this morning he came into the kitchen and said, “Imapinces!”
“Sonny, slow down. Use a big boy voice.”
“I’m. A. Princess.”
Oh. Um. No, Sonny, you’re really not. But that was very good speaking!
– Sonny will participate in oral motor activities. I have no idea what this could possibly mean.
– Sonny can type the letters of the alphabet, in order, on a computer keyboard. I keep meaning to work with him on Dance Mat Typing, as recommended by his occupational therapist. Maybe this evening I’ll finally remember to set that up.
– A plethora of physical achievements: Sonny will leap over an 8-inch hurdle with one foot take-off and landing on the opposite foot. Sonny will perform a running broad jump. Sonny will vertically jump over a 12-inch hurdle. Sonny will hop 5 times in succession. Sonny will throw a small ball at a target 10 to 15 feet away.
All in all, not too shabby. There’s a bunch of places where he Needs Improvement, of course, and there always will be. But some days I look at Sonny and say, you know, this kid is really coming along.
Up: Sonny stayed dry overnight! First time in at least a month, maybe even six weeks. The wife and I contemplate mounting the diaper in a showcase and displaying it in our living room, like it was the Stanley Cup.
Down: Sonny had a miserable day at school, earning nothing but bad reports from his teacher. He was whining. He was throwing things. He refused to do any work. You’d almost think we should put him on some kind of medication. Oh, right, he’s already on three of them.
Up: Time for homework. The routine of late has been, Sonny does his homework at the kitchen table while I do the dishes. This keeps me in the same room, which Sonny likes, but allows him to work independently, which I like, and also gets the dishes done, which my wife likes. Homework has been an iffy proposition — some days he’s cheerful and focused, and other times he whines and throws things and refuses to do any work. Yesterday was a good day. In fact, it was an extraordinary day. He breezed through his phonics work, accurately circling all the pictures that begin with G. (He thought a goose was a duck, so he missed that one.)
And then he… I assume you are sitting down… and then he correctly solved five out of six addition problems. He talked out each problem in a perfectly lucid voice: “Six… plus one… is seven!” It was like listening in on the parallel universe where the Russian roulette bullet of Fragile X missed him entirely. He has never in my presence added up two numbers to a total more than five, and even doing that has been spotty in the extreme. Suddenly he’s adding up to seven? I pick him up and we dance around the kitchen. Sonny thinks I’ve lost my mind, and he couldn’t be more pleased.
Down: Five minutes later, he has an accident. Apparently the portal to the parallel universe has closed down for the day.