Just a spoonful of sugar helps the medicine go down
In a most delightful way
Growing up, Mary Poppins was one of my favorite movies to watch, over and over again. I loved the magic Mary Poppins could spin, the order she created from chaos, the cheer she instilled in the gloomiest of gloomies. Chief among my favorite songs in the film was "A Spoonful of Sugar."
In ev'ry job that must be done
There is an element of fun
You find the fun and snap!
The job's a game
I loved the idea that something so simple, a spoonful of sugar, could make something so yucky (medicine), suddenly palatable. I loved the way that everything fell into place within the course of that song. Why, she was right! If we could just find the fun in each chore, life would be so much more enjoyable, wouldn't it? Toys would pick themselves up, or at least, it would feel that way. Dishes would wash themselves, or at least we wouldn't mind washing them.
And ev'ry task you undertake
Becomes a piece of cake
But today? Today, I feel like the song is mocking me. Why? Because of the chorus. Because, "It's very clear to see that..."
A Spoonful of sugar helps the medicine go down
The medicine go down-wown
The medicine go down
Just a spoonful of sugar helps the medicine go down
In a most delightful way
Of course! Why didn't I think of that!? If only I'd been giving J his medicine with a spoonful of sugar for the past 11 months, he would take it with a smile! What was I thinking? Riiiight. Well, the spoonful of sugar may work wonders for polio vaccine, but it sure doesn't work wonders for the myriad of ADHD medications we've tried for our Tasmanian Devil.
Obviously, there's a small hint of sarcasm in my voice right now. I haven't been writing about it so much, because it seems so darned redundant to do so, but we've really been struggling with working out a medication routine for J that will work. Or that, you know, will work for longer than two weeks. Because two weeks of working just doesn't count, in my book.
So in the last 11 months, we have tried: Adderall XR, Focalin XR, Focalin, Daytrana, Methylin liquid, and Tenex.
Bear in mind that prior to starting ADHD medication, we had never, ever been able to get J to so much as take cough syrup or an antibiotic under any circumstances. "Not to worry," Dr. S. assurred us, "I've never had a patient that I haven't been able to get to take medication. I have lots of tricks up my sleeve."
J had side effects from the Adderall XR, so that was quickly dismissed and we moved on to the next option. "Don't worry," soothed Dr. S., "about half of the time we don't have success with the first medicine with a child like J, but we usually have success within two tries." He also hated taking it.
So we switched to Daytrana, which is an ADHD medication that is delivered via a transdermal patch. We had some difficulty getting the dose of the medication correct - it's limited in the dosing - 10, 15, or 20 mg patches, and he really needed 12.5 mg, so we had to cut the patches to give him the optimal dose. The patches also really irritated his skin and the medication overall didn't work so well for him. Eventually, due to the side effects, and the fact that it wasn't working so well for him anyway, we decided to try another oral medication: Focalin XR.
He wouldn't take the Focalin XR after a few weeks because of the texture (it was a capsule with little beads inside - we broke the capsule open and mixed the beads into yogurt, ice cream, pudding, applesauce, whatever....nothing worked... once he'd decided he didn't like it, he was done). While taking the Focalin XR, we added some regular release Focalin to give a little extra help during th latter part of the day on Mondays and Tuesdays, just so he could focus at Speech Therapy. This worked for a bit, until he stopped taking the Focalin XR all together and we moved on to just the regular release Focalin 3-4 times per day.
He took the regular release Focalin for a little while, but it had two problems. The first was that it was blue. This wouldn't seem like a big problem, but he's ... well, he's unique. And if you mixed a crushed up blue pill into, say, vanilla yogurt, well, it turned the creamy white yogurt blue. And then he wouldn't eat the yogurt. But he didn't like it in anything else. Soon he started complaining that he didn't like the taste. I had to admit, it was a little bit bitter tasting compared to several other medicines. We tried yogurt, pudding, ice cream, whipped cream. I tried mixing it into simple syrup before mixing it into anything else to try cutting the bitterness, on the theory that a spoonful of sugar might help the medicine go down. Nothing helped. Finally, he flat out refused to take it.
While he was taking the Focalin, which (by the way) was doing a SUPER JOB, we added in Tenex to help with the beginning and end of the day troughs. The Tenex has no taste, and we crushed it up, mixed it into 1ml of simple syrup and served that up with a spoonful of whipped cream. This worked fine for a while. Until it didn't. Then we started putting it in mango sorbet, which worked for a long time. Until it didn't. Then vanilla ice cream. Which worked. Until it didn't. Then for a few short lived days, Lemon Sorbet (specific brand, mind you). But that didn't work more than a day or two. Then back to vanilla ice cream. Which works. Except now? It doesn't.
With all of the difficulty getting J to take medication, we devised an elaborate reward system to encourage compliance. From the start, J received a "special treat" immediately upon taking his medication. This could be a treat of his choosing - M&Ms, Hershey's Kisses, a little bit of soda, Marshmallows, Fruit by the Foot, Twizzlers, Candy Rings, Gummy Bears, Oreos, Jelly Beans, whatever worked. He got to choose what he wanted for his special treat - because that gave him an element of control over the whole affair.
In ev'ry job that must be done
There is an element of fun
You find the fun and snap!
The job's a game
In addition to the immediate reward, we worked out a system of long-term rewards as well. First, I took a picture of a Transformer he wanted and I cut it up into puzzle pieces. Each time he took his medication without a fuss, he got to glue a piece of the puzzle onto the colored paper backing I'd made for him. When the puzzle was finished, we went and purchased that transformer. We did this exercise several times. Each puzzle took about a week to finish, if he took his medicine every time he was supposed to. Shortly thereafter, he told us that he wanted to have money of his own to buy things. An allowance. While my heart skipped a beat at the thought of my baby growing up enough to be ready for an allowance, we worked out a system wherein he could earn his own money. We created a grid with 64 boxes on it. He would earn X's (which we would mark in the boxes) for taking his medicine. 4 X's for taking his medicine without argument, 2 X's if he argued about it, 1 X if he wouldn't take it for me, but took it at school with his teacher instead, and 0 X's if he failed to take it at all. Each X was valued at $0.15 and the total chart was worth $9.60 - roughly the cost of a small Bionicle or a medium sized Transformer. If he received the maximum number of X's he could for every dose of medicine he was scheduled to take, it would take him approximately one week to finish the chart. (He nearly never finished in a week). While I chafed at the idea of giving a 5 year old a $10/week allowance, the truth was, we were giving him that indirectly with the toy rewards anyway, plus he was rarely earning the full $9.60 per week regardless. Plus, let's be real: the quality of his life and the quality of our lives is drastically better when he takes his medicine. So whatever works, right?
This system worked for a while. Until it didn't. (we still do it and it has various degrees of success depending on how much J feels like being motivated on a particular day - but he's just not that motivated by rewards. If he doesn't want to take medicine, no reward is going to be good enough, period).
The honey bee that fetch the nectar
From the flowers to the comb
Never tire of ever buzzing to and fro
Because they take a little nip
From ev'ry flower that they sip
And hence (And hence),
They find (They find)
Their task is not a grind.
When he stopped being willing to take oral medications, and we realized that every single day was a struggle (and worse: when he stopped taking it even for his teacher), we put a moratorium on all oral medication and put him back on Daytrana. But this time we also used a cream to relieve the itching from the patch, and were very careful to rotate the placement of the patch (as we had been last time. The Daytrana simply doesn't work as well for J as the other medications, and we soon found new side effects creeping up - moodiness, anxiety, phobias. All of which were unacceptable. We also found, quickly that he still needed the Tenex in the morning and evening, so we quickly got that back on board, which he was blessedly willing to take. But the side effects from the Daytrana were just too frustrating, and lowering his dose didn't help and reduced the effectiveness of the drug, so we moved on to...
Methylin liquid. We had had this sitting in our cupboard for quite some time, but I had always thought there was no way J would ever try this. But I was desperate and the taste wasn't so offensive. It couldn't hurt, right? I put some in a an ounce or two of orange juice and asked him to drink it and he loved it. And... it worked! It wasn't quite the miracle drug that the Focalin had been, but it was a reasonable substitute. The Methylin and Tenex combination was a good fit. You know, for the 10 days that he was willing to take it. And then he stopped.
Back to the Daytrana. For all its faults, the Daytrana has the distinct advantage that J is willing to take it. He doesn't (usually) argue about it. There's no compliance issue. There's minimal struggle. There's little stress. And though it's not optimal medication coverage, it works to a point. And this time? It really did seem to be working... the moodiness seemed only intermittent and the drug effect seemed fairly consistent. We were pretty happy. Until we started noticing that he was paralyzed with anxiety about bugs and other creepy crawlies. He saw them everywhere, even when they weren't there. The last straw was when we were at a park and he was literally paralyzed with fear of the bees. Even when there weren't any around. We tried adding on a medication to help the anxiety, but it completely backfired with side effects that were far worse than the original problem, and we had to pull him off of it immediately.
***
I will pause here to answer the inevitable question: with all this struggling, didn't I ever consider simply not medicating my child? Side effects, frustrations with compliance, changing medicines and routines all the time... is it worth it?
Let me tell you about J without medicine. Without medicine, J cannot concentrate in school. He cannot function in his speech therapy sessions. He is so physically unaware of his space that he is not safe around his siblings. He throws fits of epic proportions because he can't keep his emotions in check. He can't organize his space or his mind. Last Saturday he wouldn't take his medication, so he was unmedicated when we sat down to lunch. I placed a plate of strawberries in front of him for the first course because he doesn't like the fish that everyone else was having as a first course. He was near tears because he was so energized and disorganized in his head that he literally could not figure out how to decide which strawberry to eat first. He needed an adult to intervene and help him organize his thoughts enough to understand which strawberry to choose. Without his medicine J cannot have a successful playdate. He cannot choose a book to read. He cannot find a toy to play with. He cannot hold a conversation.
Not medicating J is simply not an option.
***
So Daytrana? Not an option anymore. So we tried, again, to do the Methylin/Tenex combination. It worked relatively well for about 10 days, but in that period, we realized that J is a "fast metabolizer" of Methylin and needs it every 2 hours. This proved too much for his delicate constitution. While he happily took it every three hours, in Root Beer only, giving it to him every 2 hours put him over the edge. Switching him back to every 3 hours was a disaster, the rollercoaster up and down as he came on and off the medication were terrible, and he quickly moved to the point of refusing to take the medication all together.
Now we're on to a short trial of getting him back on Focalin, which will fail. And after that we'll be experimenting with a new medicine, which I don't expect to work either. Hey, I'm not a pessimist, but look, after all that, would you have high hopes either? Even the doctor doesn't have high hopes. I called him Monday and reminded him that last year he promised me that he'd never had a child he couldn't get to take medication before.
"And he's my first."
A Spoonful of sugar helps the medicine go down
The medicine go down-wown
The medicine go down
Just a spoonful of sugar helps the medicine go down
In a most delightful way