Sunday, January 10, 2016

You Say Dystonia, I Say Dyskinesia...

Holy crap...this one got away from me. I started writing, it was ridiculously long. Even by my standards. I started a basic recap after we got back from Cleveland. It morphed into Mr. Lilly's Opus.

Eff it. Gutted the bitch. Maybe I'll strip mine kibbles and bits to use somewhere else. Or not.

Sometimes the voices in my head are too reasonable. Boring.

Bennett's visit to Cleveland Clinic went as I thought it would, with one or two exceptions.

The first was my overall impression of his new Neurologist. Dr. New Kid was pretty good, but was nowhere near the blown off my rocker experience I had with Dr. Lachhwani. But, he is "Bye-Bye in Dubei" for two years, so this is what it is. Gotta make it work with New Kid.

The second exception was that I was not expecting definitive. While I didn't get much of it, Dr. NK did think Bennett had some Dystonia in his foot. Definitively.

The doc had rubbed a finger up Bennett's right foot and showed me how one toe was pointing weird and yeah, I had never noticed it before.

Going in to the appointment here is what I believed. My main theory is that Bennett has been taking Risperdal too long, and the effect of this powerful anti-psychotic medication is causing the muscle tension in his shoulders and awkward movements in his arms. So we could be dealing with Dystonia, Dyskenisia or both. Because of Bennett's brain trauma, things get complicated.

In regards to Dystonia. From WebMD:

Dystonia is a movement disorder in which a person's muscles contract uncontrollably. The contraction causes the affected body part to twist involuntarily, resulting in repetitive movements or abnormal postures. Dystonia can affect one muscle, a muscle group, or the entire body.

Brain trauma can be a cause. Stress can worsen the symptoms, and of course anti-psychotics can be a big deal in this. Why the cut/paste summary? BECAUSE...

I pulled this from Michael J. Fox's website. I liked the simplicity of the description:

Dyskinesia is a difficulty or distortion in performing voluntary can...result from prolonged use of certain antipsychotics. Dyskinetic movements look like smooth tics — sometimes like an uncoordinated dance.

If you don't follow my Instagram or Facebook you did not see this video I posted which shows the movements much better than a photograph really can. I don't know if a Blogger video will load...I may have to revise this, but I will give it a go here:

On Fox's site it also says this:

Unfortunately, today there is no good solution to actively control dyskinesia...Dyskinesia can worsen under stress (especially psychological stress), so reducing environmental stressors is important.

The movements for Bennett are worse later in the day. They are MUCH worse in environments like the above, a party or get together, where he is clearly experiencing stress. For example. Right now? As I type this on my tablet? It is 2:11 PM, he slept super late, he is watching his iPad and it is just he and I in the living room. No movements. Very little stress. There is some flexing in the right hand. I caught just a bit in a photo while he was having a snack.

So which one? Dystonia or Dyskenisia? Does it matter? I don't know. I don't know enough about it to know. Hence the FEAR and ANXIETY resulting in EXTRA DEPRESSION. But my choice here was just to show how similar they seem. To the lay person. Or to those of you who GET laid.

So what's the current plan?

It has to be process of elimination. We go back for a 2-day in hospital EEG. That's this coming week actually. I suspect it will show no seizures at all. But we have to be sure.

We have to wean Bennett off Risperdal. That's happening. With luck, if he has any coming to him, he can kill all of this by just getting off of this drug. A year or two back there was a major medication fuck up with Risperdal and a form of it called Invega. He developed a Tardive Dyskenisia that scared me shitless.

Why go back on the Risperdal at that time after seeing those symptoms?

There was no alternative. No alternative that would help Bennett during the worst of times. Times I will likely never share. The videos I mean. For one I don't have that much because when I would try to shoot the worst of his episodes I couldn't for long because I would have to intervene. I'm talking horrifying moments like him trying to throw himself down the stairs, slamming the door on himself, banging his head into the wall...not to mention the ways he would attack everyone else.

It was like Banner and the Hulk, but I'm talking back when the Hulk was an uncontrollable thing of rage...not the somewhat tame version you see in the modern Avengers movies.

And there is still no alternative.

What will we do? I don't know. I don't. We tried CBD oil a while back it didn't help like I hoped. I think Bennett needs something more potent. That's not legal here. To say that I'm frightened about what his future holds is a massive understatement. As the Risperdal is pulled further and further back, what is going to emerge? And will Bennett's physical symptoms go away or has new permanent damage possibly been done to him?

I worry less about the latter, as his movements have decreased slightly since the Risperdal has been decreased. But am I worried about the former? Yeah. Yeah...

So there you go. The short version. Well, shorter.



  1. That your son and your family have been subjected to Risperdal and the vidious side effects is outrageous. I am sorry for that -- and enraged that this drug is prescribed at all to anyone. Pure CBD is not going to help with Bennett's self-injurious behaviors, but THC very well might. You know that, I know, but I'm just going to keep sayying it. There ARE options.

    1. It's like some watered down behavioral Flowers for Algernon. In this case Bennett has, somewhat, gained control over that aggression with the drug...but take the drug away and underneath he will revert. And I'm not sure how this will be watching it happen. Tragic, most likely. Just horrible.

    2. It is a nasty little drug. I can attest to that seeing Joe has been on it since he was 5. 7 years. And it was not an easy decision to make and any minor increases that has happened over the last 7 years has been done so with a whole lot of fear. But as you state Ken, the aggression component, well, nothing has even remotely helped besides the Risperdal. Nothing. Risperdal, no Risperdal, feels like a lose lose situation. For Bennett, for kids like Joe, my heart aches. On most days I go to bed thinking how difficult it must be to be Joe. And that makes me so absolutely sad. Much love to you and yours Ken.

    3. I hear you Heather...and feel the pain.

      There was an accidental double post so I deleted it.

  2. Well as much as that last comment on Orgasm was intriguing, and certainly I'm all about talking about the big O...but not when it's horseshit Spamtacular. Sorry, even if it was posted by a real person. Probably not the best place to chit chat about it. Though I suppose I have myself to blame....

  3. WTF...why is my insignificant blog even worth spamming? It's everyday now. I gotta figure out how to make it stop I'm just exhausted.

  4. This is off-topic, but I'm listening to a discussion on the radio about developing video games to ameliorate neurological deficits associated with aging and with autism, and I wondered whether you'd ever thought about creating games especially for Bennett.

    1. I don't know...he can't play games like that so I never thought much about it. Interesting science though.


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