“Have you heard of Dystonia?”
“Dystonia,” she explained, “can be a side effect of taking Risperidone, and we should make it our goal to take Braden off of this medication.”
Dr. Lewis contacted a specialist to help her determine how this should best be done.
New Facebook status: It’s complicated.
Wow, is it complicated! This process has to be completed slowly. To decrease the Risperidone, we introduced him to a new medication, an antidepressant. And, because he is already on a medication to help him sleep at night, which is an antidepressant/anti-anxiety, our goal is to take him off that one (Trazadone). The Trazadone has a side effect which helps him sleep. But because we had to add on the antidepressant so we can take him off the Risperidone, it makes no sense to continue with the Trazadone. So, we’re replacing the Trazadone with another medication called Clonidine, which is a blood pressure medication. Its side-effect…it helps with sleep.
Confused yet? Just try sorting out all those pills into their proper containers. It makes my head spin.
Here is how a typical day looked:
Antidepressant: 1 pill
Risperidone: 1 pill
Clonidine: 1 pill
Trazadone: 1 pill
That was the dosage when we left Oregon to return to Bangkok. We had instructions to have Braden’s blood pressure checked one month later to see if the Clonidine was at the right level. I had to send that to the doctor, and she and the specialist would discuss and send us back our next steps.
Without going into too much detail, his blood pressure looked fine, so they decided we should start reducing the Risperidone by a fraction. (½ pill at night reduction).
That seemed to work out okay, although we did increase the antidepressant by ½ pill as he became more agitated with the reduction. A month later, blood pressure still looked fine, so we were to reduce the Risperidone again by ½ pill.
The result: All hell broke loose.
Braden was so agitated…so angry…his OCD skyrocketed…his behaviors were unpredictable and at times, frightening. All my fears came flooding back. Would he attack me again?
It was then, and only then, that one of us (not me) actually looked up what Dystonia is. You may wonder why it took us so long to do this. Or you may instinctively understand why this is something we put off doing.
We didn’t want to know.
Life was made easier by the Risperidone…for all of us. Could it really be that bad?
According to the National Institute of Health, Dystonia is a disorder characterized by involuntary muscle contractions that cause slow repetitive movements or abnormal postures. The movements may be painful, and some individuals with Dystonia may have a tremor or other neurological features.
Painful…tremors…possible foot drag…difficulty swallowing…painful! Ugh. Mike watched horrifying videos of people suffering from this condition and broke down into tears. What are we doing to our son?
So to be clear…there is a .4 to 4 percent chance of Braden developing Dystonia. But take a look at the other side effects of the drug…they’re not good.
You may be wondering how we could have put him on this medication without knowing the side effects first. All I can say is that when you are harmed by your own child and haven’t slept for years (see All Night Long) you might understand. Every parent with a child with profound autism parents their child to the very best of their ability, and we did what we thought was best at that time. In fact, if given the opportunity to go back in time, I would have made the same choice.
Mike wouldn’t have. Mike’s pretty angry that we made the choices we made. It’s probably one of the very few things on which we disagree.
He’s angry with himself, with the original doctor, with us as parents. I’ve never seen him more upset than he has been this past month as we’ve been going through this.
He’s full of regret and wants to fix the situation. He’s taking action. He’s making plans.
And me? I’m just in a haze…tired…living in the fog of working all day and then coming home to my second full-time job…Braden.
Since then, we have adjusted the meds again. We had to add some of the Risperidone back. Things still are not great. At about 4:30 each day, Braden gets angry and agitated.
Through Mike’s constant work (taking data on food intake, sleep patterns, etc), we have discovered that we need to take him
out for vigorous exercise at this time of day to help with that agitation. We ride bikes, go to the school gym with the spin bikes, or run around the track. We used to take him to swim laps, but he started throwing things over into the nearby lake, and we could no longer take the chance that he wouldn’t jump in the lake as well. We all know he WILL (see The Reason He Jumped).
The exercise helps. Afterward, we come home to eat dinner. Later, he needs another activity like a scooter ride or a swim in the pool. Once home again, he plays some Mario Kart and eventually goes to bed. But sleep is eluding him again…which means it’s also eluding us as he continuously opens and closes his bedroom door or runs down the stairs and back up again. Since I don’t like the thought of him running out the front door, and because I have sleep issues anyway related to my age (sigh), I have taken to going downstairs at about 2:00 a.m. to ensure he remains in the house.
Is this sustainable? Nope. Ask anyone who has seen me the past month. If they ask me how I’m doing, I no longer say fine with a big smile. I usually shrug and give a half-smile.
And I think it’s okay to admit it. I’m tired.
Back to the pesky meds. We are nowhere near weaning him from the Risperidone. We’ve only managed to reduce it by ½ pill daily. Has it been worth it?
Maybe…if only for the fact that we’ve discovered that the rigorous exercise helps calm Braden enough to make it through the evening without an incident.
Is it worth keeping him on the Risperidone for quality of life purposes? Do we take that 4% risk? Or do we keep trying?
I can’t answer that question. We can’t answer that question. But for now, we are doing our thing and will not make any medication changes until after the holidays.
If I’m honest, I don’t know if we’ll have the Happily Ever After news story that I love to share on social media. But I won’t give up hope. As they say, time heals all wounds, and this is just one of those times in our lives that seems harder than most. Something good may come from all of this. We will have to wait and see.
Facebook status update: It’s Complicated, but we’re thankful for the support of friends and family worldwide.