Medication

Given that yesterday was headache day, it seems like a good day to talk about.... medication.

Do you remember that Gallagher concert they used to show on Showtime or something back in the 80s? He used to do this schtick about having a baby. Near the beginning is this great part where he throws an anchor wrapped in a diaper across the stage and says, "We'd like to go out with you, but we've got.... the baby."

That's precisely how I feel about the whole medication dance. We'd like to go out to that restaurant with you, but... the medication will be wearing off. We'd like to perform well on the TCAPs but... the medication won't have kicked in yet. We'd like to stay at your house later than 8:00pm but... if we don't give him his medication, we'll all be sorry. I'd like to get some work done but... I have to run around town for 3 hours and find this medication that no one seems to carry. I'd like to use that medication that's worked better than any other we've tried but ... it's $400 a month and insurance doesn't cover it. See what I mean?

I was against the whole medication thing. ADHD, kids overprescribed, teachers just need to let kids be kids, boys are high energy and all that stuff. Was is the operative word there. I'm over it now. From the time Truman could walk, we said he had Pinball Syndrome. Typical kids get into things. Truman bounced like a pinball in a machine - rhyme-less and reasonless - from person to thing to dangerous item in a fashion intense enough that quite literally you couldn't take your eye off of him for any length of time. After he became verbal, we got into the phase that we privately called (and still do since this shows up in the mornings before meds are given) Young Helen Keller. (Think: the breakfast scene in The Miracle Worker where Helen runs around the dining room and puts her hands in people's mouths and pulls plates off the table and throws food.) As he grew it became more about impulse control and how that hampered social relationships and safety since his impulsivity will overrule any sense of danger or his surroundings.

When kindergarten started, about midway through the year, the teacher let us know that she thought he could benefit from trying some medication. What the hell? It wasn't working as is, so why not? We see the lead autism specialist nurse practitioner (with overseeing by a psychologist and a psychiatrist) at Vanderbilt for medication management. Something that she always reminds me about is picking the thing that's affecting his life most problem-wise and to start there. And for us, that's definitely his inattention and impulsivity problems from the ADHD.

But it's not so easy, at least for us. I have talked to many people who have a teacher or some other caregiver tell them that they think their kid has ADHD. They run to their pediatrician, who prescribes a stimulant of some sort, and voila! Everything improves and they all live happily ever after. These people, at least in my world, are the exception and not the rule. All bodies are different, all metabolisms are different, and the things that can be factored in to how a drug will react are innumerable and enervating to try to track. A brand name and the generic form of the same drug almost always react differently with Truman (and usually the preference goes to the one that costs about the same as a really decent car payment). Don't get me started on the cavalier suggestions from others that the medication needs tweaking and the "have you tried...?" which leads to the time it takes to get an appointment (especially at Vanderbilt) to tweak the medication and the time it takes to keep the appointments (God helps us if there's an illness on appointment day), and since these are controlled substances, the pain in the ass it is to GET the prescription (they cannot be faxed but must be handed over in paper form in person), or that they aren't always available or convenient to just run down the street and get from Walgreen's in any consistent way, and really, heaven forbid that it needs to be given at school because that will entail more errands and paperwork and followups with the school nurse (if there is one).

Really. How do have people have actual out-of-the-house jobs and have a special needs kid?

Here is the short list of things we have tried:

Methyphenyldate: aka Ritalin. We have taken it in the form of Concerta, Focalin, Metadate, and now in the form of a patch, Daytrana. All of them have been fairly successful, but they seem to work well for a while and then stop working. They start taking longer to kick in and become quicker to wear off. We are in that very frustrating zone right now.

Adderall


Vyvanse


Intuniv


Strattera: We also take this right now in conjunction with the Daytrana.

He also takes Clonidine, which is an old school blood pressure medication that has the side effect of sleepiness. He takes it at bedtime to at least help him get to sleep. It doesn't keep him asleep, but it does help him to get drowsy.

For sure they help with his impulsivity and inattention, but there's a trade off in side effects. He doesn't eat at all during the time he's on it, and he's already a fairly thin guy so this doesn't help. When he's coming down off of any of them, he's a wreck - lots of meltdowns and crying. They make him sleepless. And the worst has to be the headaches, which he talked about yesterday in his own post. He gets these migraine size headaches about twice weekly, and just about the only cure is to throw up. And none of them provide consistent coverage for very long. Throw some kind of illness in there and all behavioral bets are off, medication or no. Drop one down the sink and you literally just threw a $5 (or more) bill down there.

And the judgement. OH the judgment. And I know it's out there because I've done it with similar kids, and I have one of those kids. The judgement that you're covering a problem with a bigger problem. The judgement that you aren't monitoring it closely enough. Or maybe you're monitoring it too closely and being obsessive about it. It's it not just from other people. It's a merry-go-round of judgement and justification from yourself that you are setting your kid up for a drug problem, making his life miserable, buckling to the desire to have a more complacent and "normal" kid, and a host of other things that if you let it will keep you up at night (if you aren't up already with your sleepless kid) with a bag of guilt on your chest so weighty that it keeps you down and flat.

After 4 years of trying a world of meds, I can honestly say that we are no closer to feeling satisfied with any one thing than we were when we started. We have moments of beauty when he is on the medication when he is feeling fabulous and tuned in and is hitting all the right marks, but it so short lived. We live ever in hope that this is the drug or this is the point in his life, but it never sticks. There isn't an ending to this that's happy or even upbeat. I hate the medication. I wish I could erase it all, blink like I Dream of Jeannie and he'd sit in his chair and listen nicely, not run in the street, not scream or grab people or do inappropriate stuff. But I can't. So we keep on plugging, and researching and prescribing and hoping.