Archive for August, 2008

PS: Your Cat Is Dead (Probably)

August 29, 2008

Methylin, Day 2: Sonny takes his pill this morning. No discernible change. Impatient, we pour entire bottle down his gullet.

Eh. The truth is, while this new drug is supposed to improve his focus, we haven’t really been challenging him in that regard. I haven’t counted pennies and dimes with him in ages; he hardly works in his workbooks anymore; we’re not even pressing him to read out loud as much. School starts on Tuesday — let the kid have the rest of his summer vacation. Although the X-Mom did have him practice writing yesterday. He quickly became frustrated, as usual. He berates himself when he gets “sloppy.” Alas, he doesn’t know how to control the pencil in his hand, so sloppy is pretty much the only way to go. Writing practice never lasts long, methylin or no methylin.

Anyway, Sonny has been temporarily eclipsed in our daily household drama by our cat, who is missing. This is a neat trick, as Cat (as we really call her — what’s the point of naming a cat?) is an indoor cat. At some point last week, she slipped out onto the enclosed porch, and from there into the great big world. It took us a long time to notice. The cat is more than capable of hiding behind the sofa for days at a time, sneaking out only at night for food and the litter box. But the food hasn’t been eaten, and the litter box hasn’t been used. And our daughter, master of the post-bedtime stalling technique, used a new one this past Sunday: “I can’t go to bed. I want to find the cat. I haven’t seen her in a long time.”

Parents: “Enough, little girl. You go to bed right–” {realizes daughter is correct}

I was immediately filled with pessimism. The cat is fully sixteen years old, declawed, and has about the same street survival skills that Don Knotts might have displayed if he’d been lost in East Los Angeles. She’s gotten outside once or twice before over the years, but has always come back as quickly as possible, having learned and re-learned that the world is a large, scary place best experienced by viewing it after a long nap on the windowsill. This was by far the longest she’d ever been gone. It did not bode well.

My wife, not much more optimistic, nonetheless went through the motions of putting up Lost Cat signs. And so it was, three days ago, that the doorbell rang. A young man there informed me he had just seen our cat… at the railroad tracks, a good quarter mile away. I was just absorbing this incredible fact when a rustling in the weed-choked front garden caught my attention. The cat jumped out of there and ran away from us, disappearing around the side of the house.

“Maybe you saw a different cat,” I told the guy who had rung our doorbell.

“Maybe so!” he agreed.

So the cat, against all odds, was alive. Now what? She was apparently too dumb or scared or both to simply slip back inside the porch, the door to which had been kept slightly open for her benefit. The X-Mom went to the local animal control offices and procured a long trap, meant for raccoons and hedgehogs. She baited it with cat food. It’s been sitting in our front garden for two days now, empty.

There has not been a single other sign of the cat since I saw her earlier in the week. She’s now been out of the house and on her own for eight days and maybe longer. Heaven knows what she’s eating… or, frankly, if she’s eating at all anymore.

This is not the end I would have wished for our very old cat, but I have admit that it’s preferable to Sonny and his sister coming across a white-and-orange corpse in the living room some random morning. And maybe she’s still out there, staying alive by wits we never knew she possessed. X-Mom makes daily calls to animal control, who have not recovered any dead cats that match our pet’s description. We’re really not sure at what point we should give up all hope.

If by some miracle we actually recover the cat, we may finally give her a name: Quantum.


“New Hope For Fragile X Treatment”

August 28, 2008

Feels like I see that headline once a week these days. It’s better than no hope at all… but I gotta admit, I’d like to see a little less hoping and a little more treatment.

LiveJournal feed

August 28, 2008

You can now add this blog to your LiveJournal friends list. And you thought it wasn’t going to be an exciting day.

Thunder Pants

August 28, 2008

Methylin, Day 1: Sonny took his first dose this morning. Minutes later, was still unable to do algebra. Disappointing.

The whole Tropic Thunder controversy came and went before I started up this blog, but what the heck, let’s weigh in anyway.

Like just about everybody else with an opinion about Tropic Thunder and its use of the word “retard,” I have not seen the movie. I have two little kids; I don’t see movies anymore. But I’ve done my homework (on Wikipedia — where else?) and believe I understand the context in which the R-word was used. In the film, Ben Stiller plays an action hero who attempts to break through into the realm of Serious Acting by starring as a developmentally disabled adult in a Forrest Gump-like movie called Simple Jack. (The tagline for the movie: “Once upon a time, there was a retard.”) After Stiller is captured in Vietnam while shooting another film, he is tormented by his captors by being forced to re-enact Simple Jack on a daily basis.

As well as that smack-in-the-face fictional tagline, the R-word is used repeatedly in the real movie as well to refer to Stiller and his Jack character. Advocates for the disabled flipped out. The National Fragile X Foundation was happy to join in the hooraw:

The National Fragile X Foundation, along with numerous national organizations representing persons with intellectual disabilities (formerly referred to as mental retardation) has joined a protest, and a call for a boycott, of the movie Tropic Thunder. The NFXF has joined this protest due to the film’s insensitive and liberal use of the word “retard” as a form of humor. Though the NFXF understands that the filmmakers intentions were not meant to directly hurt individuals with fragile X syndrome and other intellectual disabilities, we feel that the result is a perpetuation of a term that causes pain and limits the opportunities for such individuals to be full, contributing members of society.

NFXF President Don Bailey also had an editorial in the Charlotte News & Observer in which he opines sadly that 35 years ago, “retard” was the actual word people used to describe developmentally disabled people, and by using that word again in a major motion picture, the filmmakers have “reawaken[ed] memories of decades of hard work trying to correct a terrible part of our history.” He continues, “More important, it symbolizes the struggle that families and people with intellectual disabilities face every day as they strive to be accepted and included in the rest of the world.”

True enough. But missing from Bailey’s piece, and from every other cry of outrage I’ve seen, is any sort of attempt to understand the context in which the word “retard” was used. It’s pretty clear even from reading the movie summary that the filmmakers were not making fun of the developmentally disabled. In fact, quite the opposite: They were making fun of — and even revealing a disgust at — the Hollywood mindset that looks at special-needs people as nothing more than a quick route to an Oscar. By using such a ridiculous tagline for Simple Jack, the filmmakers did not set out to revitalize the word “retard.” They were, instead, showing the inherent cluelessless and vacuousness of the Hollywood machine.

If I can understand what the filmmakers were shooting for simply by reading the movie summary, I’m pretty sure audiences will figure it all out while viewing the actual movie. This is a non-controversy.

By the Numbers

August 27, 2008

Yesterday I wrote that Sonny had fallen back on potty training. This morning he woke up dry. I swear he’s reading this blog.

So let’s talk some more about medicine, and specifically about costs. I was amazed when some of you told me your kids don’t take any meds — I assumed that was part and parcel of the full Fragile X experience. We have a kitchen drawer dedicated to the various drugs Sonny has taken. Some of them have lasted only days, so we have a ton of leftovers. I’ve got two big bottles labeled AMPHETAMINES and every time I see them I expect federal agents to crash through my front door with flash grenades.

The big bummer in my household these days, pharmaceutically speaking, is that my insurance program switched over on August 1st, and we can no longer purchase meds in bulk through the mail. Just a few weeks ago we were able to buy a three month supply of Risperdal for $30. Now it’s $236 for a one month supply — the insurance company no longer picks up a red cent of that cost. (Although it must be said that our price if we didn’t have insurance would be $1,337 per month. Yowza.)

Sonny’s also on Depakote, which we buy in a generic syrup form called valproic acid; that’s just $25 per month. And now here comes the latest med, methylin, with a price tag of $100.58 per month.

So that’s about $360 dollars worth of pills and liquids each month. As of the start of this month, that money comes out of my health savings account (HSA), which we’re starting to use for the first time. HSAs have been around for a while, but they’d always struck me as a great big ripoff. You had to predict at the beginning of the year what your out-of-pocket health costs might be, and who the heck knows that? If you guessed too low, you ran out of money in your account. Even better, if you guessed too high — if you still had money in your HSA at the end of the year — you lost that money. What a great plan. The government came up with that, right? We should definitely put them in charge of the entire health care system. They would do such a good job!

This year somebody finally woke up and changed how HSAs work. In this new iteration, any money you have left in the HSA at the end of the year rolls over to the new year. Indeed, that money can be invested, and the account will move with me from job to job. (Not that I plan on leaving my job.) And on top of that, my company is contributing over $2,000 to my freshly opened HSA, so basically they’re paying for Sonny’s meds for six months.

Of course, to be a part of the insurance program that includes the HSA, I’m paying a premium of just over $850 a month. That is a big chomping bite out of my paycheck, and each year the insurance program seems to cover less and less. (It was a hell of a blow, losing those cheap mail order drugs.) But when I really look at the numbers, I’m still ahead of the game. I’m paying $10,500 this year to keep my family on this insurance program, and another $4,300 a year for Sonny’s meds. Without the insurance, his medication would cost about $18,000 a year… and of course, the insurance isn’t strictly for Sonny’s use alone. The whole family is under that umbrella, standing guard against who-knows-what future medical calamities.

I know it’s a national hobby, these days, to rail about the high price of health care, and sometimes I even join in the chorus. And I can definitely see, if I was a healthy 25-year-old with no family, how a monthly insurance premium might seem like throwing money down a hole. From where I stand, however, medical insurance — while no great bargain — is still very much a cost worth paying.

The Good, The Bad, and The Drooly

August 26, 2008

The Good:

Some Sonnyisms I’m going to want to remember years from now:

1) “Make room for you!” He’s climbed in to my part of the bed while I was in the bathroom, and now he’s on my pillow and under my covers, with a big grin on his face. When I come back, he immediately shuttles over. “I make room for you! Get back in bed, Daddy!” I have to get ready for work, but who can refuse?

2) His sister learned this song in which the singer pretends to be a doctor, who is diagnosing the person she’s singing to. The two of them went through a period a couple of weeks back where they would sing that song back and forth, taking turns being the doctor and the patient. At the end of this, Sonny would shake his sister’s hand and say, “Thank you, Doctor Sister!” (Except he uses her real name… this anonymity jazz can be tricky.) Now after I give him his pills before bedtime, he shakes my hand and says, “Thank you, Doctor Daddy!”, and after I help him brush his teeth it’s “Thank you, Dentist Daddy!”

This past weekend I ate something that disagreed with me, and for a while I was laid up in bed with what felt like a litter of guinea pig pups squirming in my stomach. Sonny stayed with me for a while, but then asked if he could have a snack. I told him to go get what he wanted. He said, “Thank you Doct… thank you, denti… uh, thank you, Tummyache Daddy!”

3) He talks on the phone extensively, as long as he is talking to nobody. When I’m on the computer in my basement office, he’ll lie on the floor holding the receiver from the disconnected fax machine, and he has imaginary conversations that mimic things he’s heard his mother or father say. He confirms doctor appointments, he spells his last name for an imaginary but slow-witted receptionist, he laughs, he sighs and says, “I have to go. Okay. Bye.” And every phone call — every one — ends with an announcement to the rest of the room about who he was just talking to. “That was Nana.” “That was the doctor.” “That was my teacher.”

When he first started this imaginary play some time ago, he would consistently hang up the phone and announce, “That was my daughter.”

This practice has started to pay off. He laughs too much when he’s talking on the phone for real, but yesterday for the first time I was able to have a simple back-and-forth conversation with him: I asked him where he had gone with his mother, and he said Costco. It’s not exactly the Algonquin Round Table, but you need to understand it’s usually impossible to get him to stop laughing and jabbering long enough to listen to me, the person he’s supposed to be conversing with. A single question-and-answer is a good first step, and I’m glad we’ve finally taken it.

Was this kid really completely non-verbal past the age of three? It’s hard to believe sometimes.

The Bad:

Potty training seems to have taken a step backwards. He’ll have a small accident once or twice a week, and won’t even bring it up until we discover it for ourselves. And he’s never dry overnight anymore. It was only a few weeks ago that he’d been dry for so many consecutive days that I was thinking about retiring the nighttime diapers entirely. That seems now like a dream I had.

At least he’s consistently good about… the messier of the two possible elimination products. We haven’t had that kind of accident in a long time.

Our bathroom regimen these days consists of making sure he goes before we head out on a trip of any duration — sensible enough for all kids his age, I would think. Also, after he’s been asleep for a couple of hours, I drag him out of bed and get him on the potty. I wonder sometimes if he knows I’m doing this, or if he remembers it the next morning. He’s not even Sonny at that point. He’s a barely animate sack of flour. I have to steer him by the shoulders to the bathroom, get his diaper down, sit him on the potty, and then do all that in reverse. And still he’s wet again in the morning.

I don’t know how to get him over this final hump. I read on the Fragile X boards about teenagers who are not fuly toilet trained and my guts turn to ice. I really hope we can solve this problem before puberty strikes. That’s going to be bad enough as it is.

The Drooly:

At some point in the last few weeks, Sonny has forgotten how to close his mouth properly. His two front teeth now protrude over his lower lip. And that’s when he closes his mouth at all — the low muscle tone common to Fragile X kids often means his mouth is slightly agape. The end result: A significant rise in the amount of drool in our lives. A thin string connects his chin to his chest… or his navel. Sometimes it’s not a thin string but a veritable rope. We bark at him to wipe himself, and he raises his shirt and cleans the drool away. That’s not what we meant. His shirts, at the end of the day, look like they’ve been through a car wash. This droolarama came out of nowhere and may disappear just as quickly as he continues to develop.

I certainly hope so, because this is rapidly becoming a serious problem. We need the world to treat Sonny with benevolence, and in general he is cheerful and charming enough to bring most people immediately onto his side. But the constant handshaking makes some people standoffish, and when you combine that with a river of drool coming out of his mouth… well, there’s just no way to look at this as a positive development. I’m glad school starts next week. We need to have a little chat with his physical therapist.

Another New Drug

August 25, 2008

I’m a little puzzled why The Shrink prescribed methylin, which none of the pharmacies seem to have — we’ve placed an order; it’ll be here next week — instead of Ritalin, which is so commonplace I believe you can get a bottle at Dunkin’ Donuts. The two drugs, as best I can determine, are identical. The only real difference I can see is that methylin starts at a more kid-friendly 2.5 mg dosage. Ritalin starts at 5 mg, and if you want to go less than that, you’ll need a pill splitter.

As it happens, Sonny’s daily dosage (once we have the pills in our possession) will be 2.5 mg a day. The Shrink has given us permission to up that on our own if we don’t see results. Personally, what I’d like to hear from a medical professional one of these days is, “I’m absolutely sure that if you give him one pill every morning, he’ll be able to memorize and recite the Gettysburg Address by the end of the month.” I hate being put in a position where I have to decide how to adjust his medication. My medical training consists of being a temporary file clerk in a hospital for two weeks. I can’t spell methylin without looking it up. You want me to judge how Sonny is coming along and tweak his meds accordingly? Good luck to us all.

But I don’t really want to talk about meds today. It was a fine weekend. We took the kids to Bounce U, a relatively new indoor playground where kids can bounce and jump and slide on those giant inflatable thingabobs. The owners have an adult autistic child, so they are sensitive to the special needs child, and they don’t require any explanations as to why Sonny wants to shake their hands fifty-seven times in a row. (That’s his thing these days — going up to strangers and saying “Congratulations!,” pumping their hands like he’s from the Publishers Clearinghouse Prize Patrol.) In fact, the Bounce U people recognized us from our last visit three weeks ago and greeted Sonny with a big hug. They will be getting further repeat business. And yesterday we hit the beach, Sonny dragging along his giant yellow digger truck — fully extended, it’s almost as long as he is tall — and when he wasn’t gazing out at the water or congratulating nearby sunbathers, he was sitting happily in the sand, digging a series of holes.

There was also more catch in the backyard, and I swear, Sonny has improved dramatically at catching the beach ball over the last 48 hours. He caught, like, seven or eight in a row, and started missing again only because he was too hysterical with laughter. What happened? I have no idea. Maybe I’m getting better at throwing it to just the right spot. Or maybe he reads this blog.


August 22, 2008

Lately the routine has been: I come home. The wife heads for work. The kids are watching a Disney video. I step into the backyard so the dog can attend to some business. I’m out there for maybe two minutes when Sonny comes boiling out of the house with his sandal straps flapping, holding a beach ball. “Play catch with me!” His sister emerges a moment later — she’s not going to be left behind while the rest of us are playing in the backyard.

I’m relieved that Sonny still views “catch” as playtime, because I know I sometimes reveal my frustration at his utter lack of physical reflexes. Not that I had hopes that he would be the star quarterback — I’m a total nerd myself, and would never push my kids into athletics, or into anything they weren’t passionate about themselves. But catching a lightly thrown beach ball is one of those things Sonny should be able to do by now. He cannot. Most times it bops him in the rib cage and rolls away. When he does catch the ball, one out of ten times, it’s more to do with the accuracy of my throw — I have to place it right where his arms will be.

I know only one way to get Sonny up to snuff, and that is practice. But kids don’t want to practice, they want to play. (Please refer to my daughter and her piano lessons, which she was thrilled to take for maybe two weeks before she came to view it as slave labor.) So my plan to drill Sonny in the fine art of beach-ball catching never lasts very long. I can get in a few gentle throws before he decides it’s more fun (and easier, certainly) to kick the ball; or to roll on the ground singing a song from The Wiggles; or to laugh at the dog, who has chosen that moment to take a nice long backscratch in the grass, which Sonny thinks is the funniest thing ever.

“No!” I say. “Sonny, WE’RE PLAYING CATCH!” Sometimes I realize what that sounds like and I back off. Sometimes I don’t, or choose not to, and grab Sonny and reposition him for another bunch of throws. That’s always a sure-fire way to guarantee he’ll never catch anything, and maybe one day I’ll learn that. There’s a stubborn part of my mind that doesn’t understand why Sonny’s arms do not rise to meet the ball, and thinks that with this next throw he’ll surely catch on. Or the throw after that. Or the throw after THAT. Except that Sonny lost interest five throws ago and is now informing me that that cloud overhead looks like a dump truck.

Luckily, there’s always tomorrow, when he comes running out of the house again yelling, “Play catch with me!” Look at that enthusiasm! This time he’ll catch the ball every time, for sure!

Lithium, continued

August 21, 2008

Oh, right, I knew this: “[Lithium] is not the first drug of choice for stabilizing mood because of the need for careful monitoring of kidney function and blood levels and the risk of diabetes insipidus with long-term use.”

Feh. Always with the side effects.

Let There Be Lithium?

August 21, 2008

My psychiatrist has been reluctant to prescribe lithium to Sonny. I wonder if maybe that should change. Here’s the overview of an article coming out next week in the Journal of Development and Behavioral Pediatrics. If you can’t hack your way through the jargon, just skip down to the conclusion.

OBJECTIVE: In fragile X syndrome (FXS), it is hypothesized that absence of the fragile X mental retardation protein (FMRP) disrupts regulation of group 1 metabotropic glutamate receptor (mGluR and mGluR5)-dependent translation in dendrites. Lithium reduces mGluR-activated translation and reverses phenotypes in the dfxr mutant fly and fmr1 knockout mouse. This pilot add-on trial was conducted to evaluate safety and efficacy of lithium in humans with FXS.

METHODS: Fifteen individuals with FXS, ages 6-23, received lithium titrated to levels of 0.8-1.2 mEq/L. The primary outcome measure, the Aberrant Behavior Checklist –Community Edition (ABC-C) Irritability Subscale, secondary outcome measures (other ABC-C subscales, clinical global improvement scale (CGI), visual analog scale for behavior (VAS), Vineland Adaptive Behavior Scale (VABS)), exploratory cognitive and psychophysiological measures and an extracellular signal-regulated kinase (ERK) activation assay were administered at baseline and 2 months of treatment. Side effects were quantified with a standardized checklist and lithium level, complete blood count (CBC), thyroid stimulating hormone (TSH), and chemistry screen were done at baseline, 2 weeks, 4 weeks and 2 months.

RESULTS: The only significant treatment-related side effects were polyuria/polydipsia (n = 7) and elevated TSH (n = 4). Although the ABC-C Irritability Subscale showed only a trend toward improvement, there was significant improvement in the Total ABC-C score (p = 0.005), VAS (p = 0.003), CGI (p = 0.002), VABS Maladaptive Behavior Subscale (p = 0.007), and RBANS List Learning (p = 0.03) and an enhanced ERK activation rate (p = 0.007). Several exploratory tasks proved too difficult for lower-functioning FXS subjects.

CONCLUSIONS: Results from this study are consistent with results in mouse and fly models of FXS, and suggest that lithium is well-tolerated and provides functional benefits in FXS, possibly by modifying the underlying neural defect. A placebo-controlled trial of lithium in FXS is warranted.

Anyone out there using lithium on their Fragile X children?

(Thanks to Monica L!)