Question from Double Springs, Alabama, USA:

My 13 year old son, diagnosed a little over four years ago, developed this “twitching” nervous tic ‘thing” about the same time as his diagnosis of diabetes. It started off with him doing what everyone called “the hand thing” where he would constantly make motions with his hands. If you asked him what he was doing, he would say he was playing or telling a story. He had a motion for every word or action in his stories. Some thought it was cute, others bizarre, and he even frightened other kids on occasion.

Over the years, he stopped doing this hand thing, but it was replaced with extreme facial twitches which started small (i.e., compulsive type blinking of the eyes), and then it seemed it would be a new one every few weeks to months. On top of all of this twitching, he developed obsessive compulsive behaviors which change regularly. One month it will be a “hand cleaning” compulsion, then it will be that he is scared to take a shower with the door closed, or (currently) shaking of an object. Right now, he has to constantly shake a pair of socks. He has to always shake something. Once it was chains, then he started shaking strings, and recently it has become socks.

His facial twitching has become extreme. If you ask him why he does these things he describes it as “feelings” — like a feeling that if he doesn’t shake something, he will burst or go crazy and the reason he twitches is a feeling he gets in his butt or a feeling he gets on his neck or a feeling he gets in his arm, etc. He says he cant describe it, but it drives him to the point of this twitching.

At one time I understood what he meant because I have always done various twitching myself, but it has always been small unnoticeable things such as moving my foot in the shape of an eight or a two or twitching the muscles back and forth in my legs arms or buttocks, and I too feel like if I stay still it will drive me bonkers so I have to always move, but I don’t understand what he means by, “It’s a feeling I get in these places. Mine is merely a feeling in general like I have some type of electrical current keeping me moving.

I know this all sounds odd, but my concern is that it keeps getting worse. I have asked school officials year after year to test him for attention deficit problems, but they decline based on his standard test scores (but those too get lower every year). I brought this to the attention of his endocrinologist, who tested his calcium levels and said something about if they were off that may cause it, but the test was fine.

I have had several people comment that it seemed to them that he didn’t start this until he went on insulin, and they wondered if perhaps it was the type of insulin he was on. A friend (who is a chiropractor) came to the house, and after only seeing my son for ten minutes and watching him twitch, said “He is getting too much insulin or the wrong kind or they need to test the insulin levels in his body.” He was not the first person to comment along these lines. My husband also thinks it may be insulin related, and our family physician said he wondered if it was nothing more than a tic disorder related to diabetes. Is there such a thing as a tic brought on by diabetes? One teacher did however question as to whether or not it may be the psychomotor type of Tourette’s syndrome or something like that because of his obsessive compulsions that associate the twitching.

I am very concerned about this. One of the child psychologists at the diabetes clinic thought it may just be a genetic tic disorder because she noticed my feet (I was doing sideways eights at the time), but I have never twitched like he does. His face and neck actually contort hideously, he blinks, rolls his eyes, bulges out his neck and opens his mouth very wide and to the side, then blinks some more and twitches his arms and hands. It gets worse every year instead of better so it isn’t something that he is outgrowing like so many people have said they thought he would.

I have never really pushed for tests to be run because so many teachers and some doctors thought it was harmless and that he would outgrow it, but he hasn’t and also he has a hard time in school. Some of teachers give him a hard time about this and say it interferes with class. I can’t stand the idea of that poor kid being diagnosed with something else on top of diabetes, but he is referred to by some as looking like a freak and that kills me! If this is diabetes-related or may be an insulin thing, I need to know one way or another because, if it is not, then I need to prepare myself ( and him ) for yet another diagnosis that will affect his life. Yet, if he is aware of his twitching and gives these reasons of his could it be voluntary? He says he cant help it because of the feelings he gets. Please give me some feed back on this.

I know you can’t make a diagnosis, and I’m not asking you to, but I need more information and advice because I don’t agree that this is harmless and will pass. I think that most of his teachers and counselors say that because they know he has diabetes and empathize with that (maybe a little too much), and that it impairs their ability to give me their honest opinion.

Have you ever heard of something like this associated with diabetes? Could this be diabetes or insulin related? What other things could this be that I need to ask about? What about neuropathy? If he is having neuropathic feelings will that make him do this?