Male: I heard at National Public Radio, a broadcast about Tourette syndrome. It is pretty interesting. A guy claimed that Tourette gets better with time and a lot of the drugs you think are working just got better on its own. I don’t know if that is any merit. They talked about adult onset Tourette’s. He did not believe it. He thought they would probably have symptoms in their adolescent years not diagnosed and then someone was able to put the picture together later on. Are those two points valid?
Dr.: Yes. This is the answer to that. The first answer is, do medications really make a huge difference? The answer is, we think so. The trials are not great even in Tourette’s. You know, in very severe Tourette’s, there was a study of double blind sided, done that was so small back in the 80’s that showed that one of the main drugs that we used was Catapres(Clonidine) it does not work.
Male: That was an evidence based study.
Dr.: An evidence based study. It was very small, it was borderline powered and that the only problem with that study was they were very severe Tourette’s patients. And I think we all agree that that doesn’t work. In milder cases, Catapres and Clonidine have an effect and there has been data to suggest they do work. Subsequently a pretty good data actually, pretty compelling data, and evidence based good studies. In very severe cases, they probably don’t work terribly well. There is no evidence these medications for example make any long-term difference. The major tranquilizers, specifically, Resperidals are approved for Tourette’s and that does work and there is evidence based stated that it works.
Male: Works and making a little bit more comfortable to kids?
Dr.: That is correct, only when they are on.
Male: Not cured?
Dr.: It does not cure at all and it is only used as a symptomatic treatment if the tics are affecting a child in school or socially or they are hurting, if the tic actually hurt the child. So there is really no evidence that it makes a long-term difference. Furthermore, tics are very complicated and that they come and go. So if I start you on a medicine, you are better, is that the medicine or is it just stopping.
Male: Very difficult.
Dr.: It is very common for example, late August I get calls from kid’s parents that have tics and they will call “The tics are worse” and the first thing I say, we are trying not to treat children with tics for that reason. Let us wait until the middle of September and see what happens and typically they get better by the time they get in to class and things settle down. So that is always a peak month for tics and I try not to treat them. So if I treated all those kids on August 20th, you know, 80% of them are better by September 20th and I would have said “Gee! The medicine is wonderful.” And it really has nothing to do with it.
Male: It is not an honest answer.
Dr.: The second part of the question is actually interesting. We were always taught that tics do not start after AGT and I am not sure about if it is true. But the problem is that a lot of people have tics and we don’t know it and even we, most of us have tics of some sort and the question is what do, what was a tic and what wasn’t. I think tics can start in adults but the dogma is that they do not, they all start before age 18.
Male: If you look carefully in the history, you probably would find an adult onset patient, you probably will find some indicator in adolescent, there was something there, maybe not fully appreciated. So maybe it started there and went down, kept quiet and came back later?
Dr.: That is the dogma. But we don’t really know that. For example, I will see children with tics and usually one of the parents will have tics and they never knew they had tics.
Male: And one other thing that you brought up, a lot have excessive compulsive disorders and Tourette’s at the same time?
Dr.: People have tics or Tourette’s, which is a compulsive motor movement and if you have Tourette’s it is a compulsive motor movement with compulsive noises. Typically, I mean you can have no other problems but you are more likely than other populations to have attention deficit disorder, obsessive compulsive disorders so they can go hand in hand.
Male: So, if you treat the excessive compulsive which we do have some medicines for and improve that do you improve the Tourette’s too?
Dr.: Not usually, you cannot. But it doesn’t like – we have medicines for obsessive compulsive behaviors but it doesn’t usually improve the tics although if the major problem is obsessive compulsive and the tics are reactions to the stresses of being obsessive compulsive in that situation will improve it. The same thing with the attention deficit, some children have a lot of attention deficit and their tics are sort of secondary to their anxiety and their attention. We can treat the attention deficit which typically most of the medicines that treat it we think aggravate tics directly but sometimes tics will go away once you treat the attention deficit because they will feel more comfortable.
Male: Does behavior mod techniques help people with Tourette’s?
Dr.: There is not a whole lot of data that it does. It can help some of the behavior like the personality things. You know, cognitive therapy or behavioral therapy. It may help the kids understand what they have and realize how to deal with them. Because most children with tics can control them for short periods of time and then let them go. You know when they are home or other places. So it can have some bearing but it is not usually a major therapeutic intervention.
Male: Tourette’s, sometimes parents think the kid is faking it and sometimes you relate it to a case and they mentioned one in national public radio. The mother slapped the kid when the kid did the crazy movement, thinking the kid did it deliberately. That is not the case, is it?
Dr.: Right. I had a couple of parents in 30 years slapped their children for tics.
Male: We cannot see how someone could think that way, because it is wrong anytime we do it but you can see how they could think if you don’t really have a trained eye. The kid is not really having a disease in that kid and it is happening.
Dr.: Some parents take it personally, that my child has a terrible thing and tics are very common and for the most part, they are benign. They do not cause a whole lot of problem. So I think when, you know we have talked about this before. I think one has to really take a step back and not just label everything tics or Tourette’s and they might be by definition and most people actually do very well these kinds of things.
Male: The kid got a series of overwhelming brain infection. Does Tourette’s sometimes follow it?
Dr.: Not really. Usually Tourette’s is not acquired. It is something that is genetic.
Male: Those are questions that are asked to me in some of the e-mails and I didn’t know of any link between a neurological bad infection. Meningitis and the kid had Tourette’s afterwards.
Dr.: There probably is some association but, a few cases, because technically you could call for the reasons why it would happen but it is usually felt to be a genetic predisposition.
Male: Is there any drugs you know of that are coming down the road that might be potentially help a kid with Tourette’s or nothing you know?
Dr.: Not that I know of. But there are multiple medications but nothing curative and they only suppress symptoms in a subset of kids, which is a small subset that have severe tics.
Male: Are you seeing more Tourette’s today or less Tourette’s today?
Dr.: I think it is about the same. I think it has been publicized for 30 years losing my lifetime as a doctor and people are coming to it. There are alternative therapies that people use. There are acupunctures that actually see themselves as Tourette’s specialists in the Chinese community.
Male: Does it work?
Dr.: Well, there is no data that it does but that has never been studied.
Male: Or could be that the kid was going to get better anyway and you did some?
Dr.: It is very harsh. The dating with medicine is not terribly impressive and it is only for a few medications.
Male: But acupuncture, for as we know can’t harm anybody.
Dr.: That is right. So if someone wanted to go to an acupuncturist that is good at Tourette’s. I think there is nothing wrong with that. It is just a matter of “Can you afford it” because it is probably going to be outside of insurance and if you can and I can cure you, if you want to do that that is fine.
Male: So in other words, you should always consult your primary care physician and make a decision with his positive guidance. What are against some off therapies if they don’t hurt you?
Dr.: Yes, I think that is right but I think you have to be, I think some pediatric pediatricians and private care physicians maybe. So you have to have one that is a little bit open minded about it. But I think if you have an open minded primary care physician, he or she can, you should be able to go to that person and say, “Gee, should I try acupuncture for my tics” and I could tell you “Look, there is no downside, it may or may not work, if you want to do it, why not, if you want to – my child for tics there is a downside there is no data that works, I would not do it” and that would be sort of an inspired…
Male: It is a risk…
Dr.: I think it is a risk benefit, yes. And people cannot be dogmatic, neither can a doctor and some doctors are.
Male: So in other words, you make a decision, you sit down with all the people around you and you say, this therapy won’t hurt me.
Dr.: Or might…
Male: Or may not.
Dr.: And I think that is why you make the decision. You should have an inspired primary practitioner that you can actually bounce this stuff off.
Male: I thank you very much.
Dr.: Thank you.
Transcription by:
Scribe4you Transcription Services