There must be an election in our future. I keep hearing people utter the phrase “I experimented with drugs in my youth”. The only time someone says that is when someone is running for office. We’ve been doing our own experimenting with drugs. Perhaps MJ will run for office one day and he can utter the same phrase.
I am thankful for medications that help MJ and, at the same time, afraid of them. They can work miracles and they can also cause harm. Neither the benefits or risks are ever clear. Hence the need for experimentation.
The need for experimenting with medications is driven by the uniqueness of each individual’s physiology. It’s not possible to accurately predict how every person will react to a particular medication. We can get an idea, but the only way to know for sure is to try the medication. This is even more true for children than adults. Almost all neurological medications are considered “off label” when prescribed for children. The “off label” term alludes to the fact that it is being used for a purpose that is different than that for which it has been tested and approved (by the FDA, here in the US of A). There may be some studies available that involve children but there is rarely the level of research required for FDA approval.
That leaves parents facing some difficult decisions when considering use of such medications for their children. Nonetheless, I believe that medications can be helpful to some children with autism. I’m not advocating medication as a cure or as a one size fits all treatment. Instead, I’m going to share some of the strategies that my wife and I use in making our decisions regarding medication.
Our starting point is to be very specific in identifying what we want to accomplish with medication. It’s inappropriate to introduce medication to do something vague like “help with autism”. It’s a little better to identify a general need such as “help with mood regulation”. I feel much more comfortable when we can be more specific such as ‘help reduce incidents of impulsiveness that lead to safety problems’. I’d love to be even more specific and be able to identify the need as clearly as “help reduce the level of anxiety leads to impulsiveness and that is most apparent in the pre-bedtime hours”.
The next thing we do is research, which of course involves consultation with experienced professionals. I could write lots about this step but there are two items that I find critical for the next steps: 1) how quickly is the medication absorbed and 2) how long it stays in the body.
Regardless of what medication is used and the reasons for using it, I think it’s very important to use the lowest effective dose. This is more important with drugs that have side effects, but it’s a good approach to use for any medication. Of course, the lowest effective dose won’t be listed on the bottle and is likely to change over time based on lots of factors. It may go up and it may go down. The only way to know is to experiment.
It’s exactly this type of experimenting that we’ve been doing the past few months. MJ started at a new school last fall which dramatically reduced the external factors that caused problems for him. Once he settled in we knew that we’d be able to reduce some of the medications that have helped him through a very difficult year. Some of the experimenting was very simple, short, and very successful. We reduced the dosage of one of the medications he was on to almost zero over the course of a few weeks. The medication was fast acting, and it was very simple to monitor the changes.
The second experiment was also somewhat successful but much more difficult. Unfortunately, the only way to find the lowest effective dose is to reduce the dosage until it’s no longer effective. No longer effective. Three words with a potentially huge impact. After all, we’re using the medication for a reason and losing those benefits was very difficult for MJ. In this case, the challenge in finding the lowest effective dosage was due to this particular medication’s very slow absorption and dissipation rate. It was about 10 days after we dropped the dosage the last time when we knew we had reduced it too much. We then increased the dosage, but it took about another week for the level to get back up to where MJ needed it. We were fortunate that this period occurred when MJ was home on Christmas vacation so we were able to make a lot of additional accommodations for him. It was during the middle of this time that I took to writing bad poetry. Fortunately, MJ is doing better, and I’m no longer writing poetry.
It was incredibly difficult to see MJ go through the tough times that I knew I caused. I know it is better for him in the long run as we were able to reduce the dosage of the second medication by one third. It was still hard, for MJ, for me, and for the whole family.
We’ve also learned the hard way to conduct only one experiment at a time. This includes medication changes and other significant changes that may impact MJ. Introducing multiple changes makes it very difficult to identify cause and effect. An unfortunate combination of changes last year resulted in a hospital stay for MJ. We are much more careful with changes because of that incident.
We are always evaluating whether or not medication is effective. Sometimes, we’ll be very diligent about making written records. Other times we’re much less formal. Either way we’re always watching. We’re not always experimenting, but we’re always watching.
I’ll close with the usual disclaimers: I’m not a doctor or a pharmacist. Your mileage may vary.