Just a Spoonful of Sugar...

 

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

Comments

[laura]

a friend's daughter has severe ADHD and is like this without medicine. literally cannot organize to do something--even something enjoyable, like opening birthday presents.

good luck with the meds!

[Beth]

Oh Karen, this sounds like a nightmare! Adam is only 2 but he already refuses to take meds (so let's hope he never needs to again. Ever). You are such a wonderful & patient Mom. I love the reward systems, too... that puzzle pattern is a great idea. Wish I had more tricks up my sleeve (being the school counselor that I am) but it looks like you've tried everything. Will he be old enough soon to take the meds in pill form?

[Kelly]

You have incredible patience and perseverence, not to mention that you're incredibly creative! I loved the puzzle reward idea, too. Maybe that'll be more successful as he gets older? J is soooo lucky to have such a wonderful mom. My heart goes out to you. Good luck!

[cat]

Oh gosh, I have no advice, but I will certainly remember all these great ideas you have tried. Thanks and all I can say, is good luck. And you are trying your best.

[Beth]

So I must have jinxed myself. Adam woke up at 3 am with a fever and needing tylenol. Which he cried, screamed and protested through. Deep sigh. I'm taking him to the Dr. at 8 since he was just sick 3 weeks ago.

[Erin]

Wow, you're amazingly creative about this...but I wish you didn't have to be amazingly creative! It's great that J is so much better able to focus on the medication, and that you've seen so much improvement with him on it. If only there were an easy way to get him to take it. Sometimes 5 is just too young to understand the connection between "Take the medicine" and "Have a much better day". As adults, it's easy for us to see how the two are interrelated, which probably only makes it more frustrating when he refuses to take it.

Let J know that this is not the best way to distinguish himself from all the other kids ;-)

Sigh. I hope something works. I can tell how frustrating this is for you.

[Carrie]

I am a special education teacher and we often have trouble getting students to take their medication. I have one student who plays games with it. One day he wants it in chocolate pudding, the next vanilla, the next just with water.. It is a guessing game, or it was. I decided to play hardball with him. I told him that basically this was an expectation of the day. If he was going to join us for lunch and complete the afternoon activities then he had to take his medication. It was a rough few days but he now takes it. He doesn't understand what the medication does, he is only 7 and is delayed. He now understands that this is an expectation like going to the bathroom and brushing his teeth. I don't know if it will work. But why not stop dealing with the rewards, of course tell him that you are proud, etc. It should be that this something that you have to take and if you don't take it then you will not have a typical day. You will have some rough days. I have done this with quite a few students and I haven't had it fail. My latest student almost failed honestly. I know there are kids that this won't work, that they won't care if they don't get to eat their lunch or participate in activities. Ultimately though if you can't find the right medication, then you will have to explore some behavior management strategies in the home and possibly some picture schedules. I am not up on the generic names of ADHD drugs, but have you tried Straterra? Good luck! I have a student that when he doesn't have medication, can't even stand still to focus and go to the bathroom. It is sad. I understand what you mean when you say not medicating is not an option. I wish more parents had that opinion.

[carey]

As a therapist who works with several ADHD kids, I had to comment to applaud your effort. Your puzzle reward is so great that I am going to use it and teach it to my client's parents (and my wife who is a ped just chimed in saying she wants to tell parents about it too!).

[My Reality]

Could you hide a whole pill in a bite of something like pudding or ice cream? Something that doesn't need to be chewed?

I don't know Karen. You have obviously tried everything. I know you will find something that will work eventually.

[hopefulmother]

You are AMAZING. I am so impressed with your patience and thoroughness in this whole process in finding the right med/right dosage/right delivery method. (And while having triplet toddlers to deal with too!)

I understand that you must be incredibly frustrated with the process...and I hope that *something* works soon. UGH.

[Decemberbaby]

I am in awe of you. J is so lucky to have you for his mom. I'm positive that he knows how much you love him AND believe in him.

[Sally]

First of all, this isn't a criticism or negative post in any way! You are an exceptional mom and I love your blog. Yours is tops on my list of blogs to read. And, let me also say that I have no children so what I'm about to say is not based on experience AT ALL because I have none. But....having said that, it seems to me that this is a battle of wills. I think that parents should be parents and children should be children. In no way do I think J should be physically harmed at all in an attempt to take his meds - but, as parents, you guys need to "win". Not "win" of course as in a competition, but win in the sense that he has to take them to be a pleasant, happy and productive child and win in the sense that you are still the mommy and what you say goes. That is the "table organization" Mommy/child...
So - have you and your husband physically restrained J? I mean, surely if you held him down, he would take the meds. And surely after a time or two, he would realize who is in charge (not him!) and it seems perhaps he would more willingly take the meds on his own. I'm sorry if this sounds harsh but honestly, children DO need to know who is in control and at his age, he should not be. That is just my opinion, it's not meant to be mean. :)

[judy]

Hi,
I have been a long time reader and huge fan. I am wondering if you have ever heard of using the drug Lamictal for ADD or ADHD? My son (now 14) has been on it for a year with great success. I found out about it from a friend whos 5yo son also responded really well with no intake aversions.
Lamictal is usually used for bipolar, but has been shown to really help with impulse control in children. The best part (and the reason I started my son on it) is that there are no side effects at all.
Anyway, if you have any questions shoot me an email.
[email protected]

[The Microblogologist]

J is the luckiest little boy in the world to have parents that love him and care about him so much. Not sure if everyone realizes that he is not your biological child and you chose to take him in and raise him as your own despite the difficulty that his quirks bring. Many would have given up on him and decided it was too hard, I can't remember how many homes you said he had been in before you guys got him but I remember it was definitely more than one in his first year of life. You and Seth looked past his problems and saw the gem that sweet little boy is, it shines through in your posts about him and in your struggle to help him show the world how spectacular he really is. I hope and pray you get past this hurdle soon!

[LeahGG]

I thought it would be possible to give a kid medicine by force, but I see that I can't really do it with my two-year-old.

I can either sneak it into a drink (though she's quite suspicious of new drinks) or I can give her a suppository.

If I try to force it down her throat, she'll throw it up pretty much every time.

The only advice I can offer is this: Mothers never give up!

[Dorinda]

Hey!

I tried to e-mail you but it bounced back. Just wanted to see how you were doing :) Sorry I missed you yesterday - we're down here in FL - hopefully we'll make the next get-together!

Thanks for your comment on my article - hope that you keep up your writing.

[diabetes]

You are great. I am so impressed with your patience and thoroughness in this whole process in finding the right med/right dosage/right delivery method.

Sam Nisbett

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