The Foorce

I have a confession to make in the privacy of my website. I have been experimenting with James’s medication on the weekend. I didn’t ask the doctor (though she said we could take him off the meds on weekends) but I do feel like it is my right as his parent to not have a raving lunatic or a drooling zombie in my house thanks to the drugs that are supposed to be fixing him.

Up until 2009 we were a drug-free household, aside from the occasional tylenol or benadryl. But as he got older, James had more and more spacey episodes until it got bad enough that we were referred for a new 24-hour EEG. Immediately after the tests the neurologist, whose opinion I respect very much, told us that James was severely ADD and that he was also having pre-seizure activity every 30 minutes while he was sleeping. She gave us some options as far as medications went, but the options were all drugs one way or the other. We picked one with anti-anxiety side effects because James has always been a nervous child, and off we went.

The drug we settled on, Strattera, would take a few weeks to build up in his system and work. There was also a long list of scary side effects like suicidal thoughts and organ failure included in the book that came with the pills. I felt so guilty the first week about giving James the medication, like I had failed to fix him the good old fashioned way. As a parent who resists taking tylenol unless I “really need it” a.k.a. lying in the fetal position on the floor, I felt so bad forcing James to take pills which were “changing who he was.” And I wish I could say that he underwent some miraculous change that made me feel better about it all, but it was so gradual that it became hard to say whether we were imagining positive effects or if it was my guilty conscience seeking out something good, because lots of the side effects were certainly not.

We needed more medications to counter side effects like sleeplessness and constipation (my favorite), and then more pills to help with new problems like anemia, which caused worsening constipation which resulted in more medications that only increased as we increased the dosage of Strattera which resulted in me writing a really long run on sentence to explain how we got to eight pills every night from one.

Everyone with me so far? So after a year or so on the Strattera, it seemed to start wearing off. It was like his body was getting used to it. People started to mention the staring spells again and we were having trouble getting James to respond to things like stopping at the corner before walking into traffic. But, he was less anxious which was a huge positive for all of us – totally not nervous about going into school alone, or getting hit by a taxi for that matter. We told the neurologist what was going on so she lowered the dose of Strattera and added a new medication, Vyvanse. This medication was different in that it wore off each day instead of building up in James’s blood like the Strattera. It would last about 10 hours, so it would be perfect for a little pick-me-up during the school day, but we wouldn’t see much benefit from it at home.

It is also a controlled substance, a stimulant, and apparently we might start selling it on the streets because they will only write us a prescription for the exact amount of days in between appointments. I have to fill the prescription and pick it up on certain days before the script expires and there are no refills without a doctor’s appointment, period. So it makes it hard to feel good about putting this dangerous potent pill inside my child. But as of three months ago that’s what we started doing.

The first few days were quite miraculous – it was like a light switch turned on. James was pleasant, engaged and attentive. We were so excited, until the fifth day when he came home from school and was in a foul mood. I figured the meds wore off early and put a frown on my calendar to remind myself it wasn’t such a great day. Then the frowns on the calendar started to increase and soon it became a mystery each day – would James have a fantastic day or a really crappy one? Would he come home happy, do his homework and eat dinner with us or would he come home and zone out at the table as his meds wear off, hit his sister and scream about having to take a shower? Apparently one of the side effects were increased mood swings, and for anyone considering this medication I say do not underestimate the mood swings just because you get distracted by the kidney failure and suicidal tendencies listed immediately after that.

So that’s how we got to the present scenario. James doesn’t seem to have the mood swings in the structured school environment so the Vyvanse is working there for now. We hate to switch him from anything that helps him in school. On the weekends when we are home as a family we have a choice. Give James the Vyvanse and deal with his crazy mood swings which are sometimes very happy and sometimes bizarre and terrible, or let him skip the Vyvanse for the weekend and live with a more pleasant zombie who needs instructions repeated no less than a dozen times. The last few weekends seemed to go better off of the new pills so we thought we had found a happy medium, until this past weekend. Even though James was not taking the Vyvanse he still managed to go through a million mood swings that involved screaming fits about getting dressed, doing homework, going to time out, sitting at the table for dinner, and some other spectacular tantrums in full display of dinner guests, and he was also a zombie. Best of both worlds, truly.

Maybe it’s not the pills’ fault after all. Maybe the mood swings are some horrible prepubescent preview of what is to come of my sweet little boy. So I will probably keep him on all of the pills and just keep track of James’s behavior to tell his neurologist. I wonder what James would be like pill-free but am terrified at the prospect of taking him off of all of these medications now. I’m dependent on medications that may or may not be working but starting over seems impossible. I sound like a Lifetime network made-for-T.V. drama drug addict, and I’m not even the one on the drugs.

I know this is a controversial subject and I don’t pretend to have an answer or even a clear opinion. I can’t pretend to be anti-medication when I have my child on all of these pills but I definitely can’t say I am pro-medication either. I’m still floundering and now I have to tell our neurologist this week that I have been playing doctor on the weekends with no clear results. I know some people are more fortunate to have a clear-cut situation but I am even more sure that others are in the same boat as us and struggle with similar issues.  I always say “strength in numbers” and this is a perfect case in point – I feel like sharing these stories with each other, however uncomfortable, is not only therapeutic but is another way to gain information and make better-informed decisions for our loved ones. What do you think?