For the past several years, I’m guessing four years but it could be more as time is passing so quickly, Chris has been struggling with motor tics. They didn’t exactly come out of nowhere as ever since starting on antipychotics Chris has exhibited mild twitches and odd mannerisms which I describe in my book. That has led me all along to question whether what I was seeing was the effect of the drugs or the underlying condition. There are a lot of other odd things that go along with schizophrenia, and as most of you only too well know, we parents are always asking ourselves concerning the drugs if the chicken came before the egg and vice versa.
A neurologist Chris consulted twice ruled out tardive dyskinesia and any other neurological condition (although I never spoke with him and was getting my information from Chris and Dr. Stern. The consensus between Dr. Stern and the neurologist seemed to be that Chris’s motor tics were caused by anxiety and they would go away when his life normalized (?) after he had successfully transitioned to Florida. Well, he has successfully transitioned to Florida, he’s in good mental shape, and his motor tics are still there, causing some of the people at the program he is in to ask him if he has Tourette’s Syndrome.
Let me be clear. His motor difficulties wax and wane. I have seen them disappear for a few months then creep back in. Recently, they disappeared for a whole week, only to pop up the next day. Because the word Tourette’s has also been popping up a lot of late, I went straight to “the Google” to see if I could figure this out. The symptoms of Tourette’s seem to fit the bill, except that, according to the NIMH, Tourette’s is something that starts in childhood and diminishes greatly in late adolescence. For whatever reason, probably because all of these disorders are linked in some way that science hasn’t been able to crack, I looked into what the NIMH says about OCD. Now “everyone knows” (right?) that OCD is about obsessions and compulsions — handwashing, germaphobia, checking, checking, checking. OCD is something that first manifests in childhood and in adolescence. What made me almost fall off my chair was found half way down the page:
Some individuals with OCD also have a tic disorder. Motor tics are sudden, brief, repetitive movements, such as eye blinking and other eye movements, facial grimacing, shoulder shrugging, and head or shoulder jerking. Common vocal tics include repetitive throat-clearing, sniffing, or grunting sounds.
Whoa, I thought. I‘ve never heard of this! Have you? Since when does OCD involve motor tics? The NIMH page is silent on providing an answer to my question. I put OCD aside for about a day, because Chris’s motor tics popped up when he was 30, not 18 and the NIMH page would lead you to believe that the tics are related to the prime age group where OCD occurs.
After a bit more research I figured out (and please correct me if I’m wrong) that motor tics as a feature of OCD were added to the Diagnostic and Statistical Manual of Mental Disorders (DSM) in its 5th edition published in 2013. This is rather big news, I would think.
My next thought was Jeez, this sounds an awful lot like tardive dyskinesia, which is drug related. Maybe that’s why the NIMH is silent on this.
I did a bit more googling and managed to find a couple of publications linking OCD-like motor tics to use of certain second generation antipychotics. I’m not even going to try to retrace my steps and repost them. It’s just too upsetting to me, and I already lost a night’s sleep.
Ever the optimist (because I have to be), I took apart (tried to rationalize) what the journal articles were saying. First of all, it was hard for me to understand specifically what the articles were saying because I’m not well versed in medical vocabulary. Second, as usual, the articles seemed to say that as this is a little documented area, further research is needed. Third (and here’s where you’ve got to be an optimist or you won’t feel any personal relief), just because they think the symptoms are linked to the drugs, doesn’t mean they are.
Stay tuned. There’s a lot more going on behind the scenes right now that I’ll write about later. Chris also has an appointment with a new psychiatrist this week and he’s going to have to come up with the right spin on the tics to avoid a new drug being introduced if the doctor notices something.
My son Scott is 29…diagnosed at 21 with paranoid schizophrenia ..is experiencing more violent thoughts, numbness in his fingers and toes, lack of balance…these are relatively new symptoms. His doctor suggested he may be experiencing OCD. Different then washing hands, checking locks, etc. this is OCD paired with psychosis which means his thoughts don’t just come in and go out. He obsesses and ruminates and suffers over things that he thinks he may do. With that can come tics as a result of the anxiety. But he was told by the RN at the hospital where he currently is, that if he was homicidal, a pedophile, or violent in anyway, he wouldn’t be having these thoughts. He would, instead be doing the actions.
Thank You for keeping us updated. I love your research!
My first thought was ‘How on earth can these idiot MDs rule out drugs as the cause??’ How can they claim with any evidence-based certainty that the tics are not akathesia? They cannot POSSIBLY know for anything approaching fact what the drugs are doing or not doing. And the ‘difference’ between OCD and tics seems like a ‘distinction without difference,’ or whatever the saying is.
I don’t know anything about anything. Both of my kids exhibited bizarre little issues at different points in their childhoods. Neither was ever on pharma. My older son had light-switch- and water-faucet-checking issues that I caught early when he was quite young, and together we addressed them ‘behaviourally’ and he got rid of them. Sometimes they returned a bit and he got on them. His health is often related to life stress issues.
My younger son went through periods of throat-clearing, shoulder- and other-joint jerking, and maybe other things I’ve forgotten at the moment. I’ve always addressed that very responsibly by yelling a lot. (The chiropractor was unconcerned about all that shoulder and joint stuff. He didn’t mention my yelling.)
My issue is that nothing the pros have to offer about OCD or motor tics is evidence-based, except isn’t akathesia well-documented? Too much of what these people offer is just all more check-list pathology (the DSM is the worst) dressed in a white coat, with a framed degree on the wall.
“I’ve always addressed that very responsibly by yelling a lot.”
Lol.
All too familiar to me. Following my son’s breakdown at 18, he started on a very low dose of Risperdal after which he started twisting his head/neck as if to shake away hair from his eyes. Not long after, he was admitted to his first hospitalization. The attending doctor asked how long he had had Tourette’s? I replied that he didn’t have it – the ticks started just recently. Then Risperdal was increased, Ativan and Cogentin added and that particular tick stopped and hasn’t returned. I believe Cogentin is given temporarily to prevent Tardive Dyskinesia, but can I say that Risperdal caused the tick or Cogentin stopped the tick? Not with any certainty.
As a preschooler, he did have one very repetitive impulse (OCD) where he made a noise with his mouth and then stamped his foot. He explained that he had a common musical phrase in his head. If I could add some audio here you would understand exactly what this was. Anyway, It consisted of seven notes and it was the last note that he verbalized and then stamped as if to add emphasis/exclamation. It wasn’t until much yelling by his father and I that he stopped doing it.
Back to post breakdown years, he has lots of quirky behaviors and preferences that I consider OCD. They need behavioral therapy, but one must be willing to change for that to be effective. So I try to break him of them or redirect them in a more positive way when I can, but have given up on most. His current doctor seemed surprised when I first brought this up saying that he didn’t see him rearranging items on his [the doctor’s] desk. That’s the stereotypical response. If you lived with him, I said, you’d see what I mean and then gave him very clear examples. Sometime after that, the doctor completed a medical form for my son and I noticed that OCD was listed along with schizophrenia as a diagnosis. I had read that a small amount of Prozac could help with OCD, but it hasn’t helped him.
I tend to believe that various traits present in his young life culminated in the diagnosis he has been given and medications did not cause the problems. They also only provide limited help.
Interesting family story. You and Liz below should get together, lol. “It wasn’t until much yelling by his father and I that he stopped doing it.” These OCD like behaviors are threatening to bring out the Sturmbannführer in me, too. They’re driving me nuts. I have to leave the room. Like you say, certain behaviors may have been lurking in childhood, and I have the impression that boys in general are more prone to OCD behavior. What role the drugs play in creating the behavior or exacerbating a latent problem is not well known or publicized.