I’d really hoped that our first medication would be the one which would help ds control the dystonia and would be one with few, if any, side effects. Unfortunately, this hasn’t turned out to be the case. As of yesterday afternoon, he is off the medication.
The impulsive behavior was increasing-Friday night, ds took off from the football game without letting us know and was found outside our house, in the dark, cracking his whip (whip making is his focus at the moment). He was also taking off on his bike without letting us know. Normally, ds is a very compliant child so this change was concerning to us.
Now that he’s off the medication, we’re also noticing that the meds made him angry as well. He told me this morning that his head is clearer and he isn’t as sleepy. He is concerned about the increase in the number of times during the day he struggles with his hand and his feet not working properly.
We are also struggling with our neurologist. It’s not that I think he is a poor physician and don’t trust him. Not at all!! It’s that his communication/treatment style is going to push me over the edge. All along his approach has provided little guidance. When we first started the medication, we were given a list of 4 options to treat ds and I was asked which I wanted to do. When I asked which the dr would prefer we do he talked in circles, never clearly giving us his opinion. I am more than fine being given a list of treatment options and I do appreciate that greatly. However, I would also like to hear, “Those are your options, but of them, here is what I recommend we do and here is why.”
I feel that too much responsibility is put upon my shoulders in this decision-making process. I am not a physician. It is stressing me out.
So…where are we now? I’m really not sure. At the end of yesterday’s phone call with the neurologist, he told me to “keep in touch” regarding ds. Here is what I know and don’t know as a result:
- What I am supposed to do regarding the numbness in ds’s index finger that has been constant for the past week. DS gets up every morning to let me know about it. The neurologist said something about making ds an appointment with their PA but then dropped that after deciding to take ds off medication
- If we are going to try another medication
- When I’m supposed to call back to “keep in touch”
What I feel is that the neurologist doesn’t want to be bothered with this. I wish I knew what to do. Sigh.
