The Decision to Cancel Therapy

Ever since Thumper had been diagnosed with Tourette Syndrome, we had been seeing this Behavior Health Specialist who was supposed to be teaching us relaxation techniques and something called "brain tic reversal therapy".  The neurologist had told us that we would maybe see the specialist "a couple" of times and that would be it, but now we were going on our 4th visit to the Health Specialist and there didn't seem to be an end in sight.  Really, was it doing any good?

She had taught Thumper some "alternative behaviors" that were supposed to be used instead of his tics, but we couldn't really tell if they were doing any good.  Sometimes he would tic a lot, and sometimes he wouldn't.  At this point in time, he wasn't really having any huge problems, and so we wondered why were we going to these appointments every 2 weeks?  Plus, it was getting really expensive, and was it worth it?

I know I may sound like an awful mom to say that I thought about money over the health benefits of my son, but I needed to justify having to spend over a hundred dollars for every appointment to whether or not it was really that beneficial.  We had a really high deductible, so no, his appointments weren't covered by insurance.  We had to pay out of pocket every visit.  Honestly we were going broke!

At the next appointment, I met with the health specialist and told her my concerns.  I told her we didn't really have hundreds of dollars to be spending on therapy appointments twice a month and that I didn't know this was going to be a continuing thing.  Did he really need these appointments?  She had given us some ideas, so now couldn't we just call if there was a problem or stretch out the appointments?

She didn't seem to get the hint, because she began to suggest that we still meet many times a month but she would try to shorten the appointment time so as to only have to bill me for 45 minutes instead of an hour.  But why?  Why did we need to be going every 2 weeks and what good was it doing?

Plus, you come to this sort of questioning.  Is this what we are supposed to do with a diagnosis of Tourette's?  I mean, is this what people do?  They go to therapists?  Forever?  Thumper seemed to be doing alright.  I mean, yes, he was still ticking on and off, but it didn't seem to be causing him so much pain (or maybe he was getting used to it?---I know, awful to think), so did we need to be doing this?

Anyway, I told the therapist we needed to take a break from appointments until we figured things out and got more money in our flex spending account, and so she agreed and told us to call if things got "out of control".

Yes, I felt guilty, but I think Thumper was doing alright, and maybe this wasn't what Tourette's was all about.  We decided to start doing a bit of research and trying to find out what others do with a diagnosis of TS.  We began looking on the internet, looking for books at the library, and searching for support groups to find any information we could.

Alternative Behaviors for Suppressing Tics?

So, here we were going back to our 3rd appointment with the Behavior Health Specialist that the neurologist had referred us to for this "Tic Reversal Therapy".  While one of Thumper's big tics was swallowing and gulping loudly, this doctor had him trying out an "alternative behavior" to try to stop the tic.  

Every time he was to gulp, he was supposed to put his teeth together and by doing so it would make it too difficult to tic.  So, did this work?

Well, for the first few days he gulped nonstop.  I don't know if it was because he was keeping track in this little notebook and that was exciting for him, but Thumper was gulping, biting, and tallying all week.  It was crazy.  He would come up to me and show me how many hundreds of tally marks he was making in his notebook.  Was I supposed to say "Good job!"?  I didn't know.  

But then, after a while, he wasn't ticking so much.  If it was the alternative behavior that had helped or just that his tics were waxing and waning, I wasn't sure.  

We went back to the specialist to report.  She wanted him to continue with this alternative behavior but then she also wanted him to count how long he could go before the urge to tic would go away.  So now he again would be biting his teeth and tallying in his notebook, but then he had to write numbers of how many seconds it took to relieve the tic.  OK, more focusing on the tics.  Again, I felt like this wasn't right to draw so much attention on them all the time.  Hmmm....

Thumper had two main tics.  He gulped and swallowed, but then his other big tic was a physical tic of scrunching up his face and nose and making a little ooh face and winking his eye.  All of the facial tics seemed to stem from the nose scrunch and then build off of it from there.  

This specialist had addressed the gulping and swallowing with a teeth biting alternative behavior, and now she wanted to address the facial tics. She gave him a new alternative behavior to stop the nose scrunching.  She wanted him to press his lips together every time he did the nose scrunch tic.  This was to stop him from being able to scrunch up his face.  Did it really?  I didn't see how pressing your lips together stopped any nose scrunching, but Thumper seemed to think it did, so we added this to the alternative behavior list and we were sent on our way.  Thumper was to record both tics and alternative behaviors and how often he was ticking and how long it would take him to stop after doing the alternative behaviors.  

This all seemed like a lot to me, as for the next few weeks he carried around this little notebook tallying and counting as he ticked, bit, pressed lips, and recorded.  Again, why were we trying to make him so aware of his tics?  While the doctors didn't think he had any big OCD issues that often coincide with Tourette's, it seemed as if now he might be getting a little obsessive with all this tic recording he was doing!  

Was all this really worth it?  I thought we were just supposed to be going to one or two appointments and learning some "relaxation techniques" as what the neurologist had told us.  It seemed like we were in this never ending follow ups with keeping track of tics.  I don't know if it was helping or not, but we kept our appointment and went back once more.

Tic Reversal Training for Tourette Syndrome?

The neurologist who diagnosed our son with Tourette Syndrome asked us to see a Behavior Health Specialist to see about something called "Tic Reversal Therapy".  This tic reversal therapy or training was some sort of way to teach the brain to not tic or do something else instead.  

We really weren't sure about all of this, but we didn't know what we were supposed to be doing if anything after your son is diagnosed with Tourette's, so we just went along and did as we were told.

The Behavior Health Specialist was a nice lady, and she seemed pretty smart, and so we sat back and let her tell us what we should do.  She had asked us to monitor Thumper for a few weeks and keep track of how often he was showing tics and which ones.  This we tried, but seriously, unless I had all the time in the world in which I could just sit there and stare at Thumper, there was no way I could keep very good record.  It was impossible most of the time, and so our little log turned into more of a guessing, make up the answers sort of journal.  

It was hard to say when Thumper ticked more.  I couldn't say he did it more in the morning or at night, or after school.  I think I didn't have a lot of time while getting 4 kids up and going in the morning to pay enough attention.  I suppose I noticed it more at night, but that was only because the day was winding down.  Who knew?  I wasn't much help.  

So anyway, we turned in our "best guessed" journal of Thumper's tics and waited to see what was next.  

This is where things surprised me.  She wanted us to come up with a sort of "cue word" in which every time we saw Thumper tic, we were supposed to say the word so that he would be aware of his tics more.  OK, this seemed a little odd.  I thought we were supposed to ignore the tics and now we were going to be focusing on them?

We trusted the doctor and did this for a few weeks as well as keep another log of how his tics were (another awful hit and miss record!) doing.  At our next appointment we turned it in and awaited our next instruction.  This is where the tic reversal training began.  

The doctor gave Thumper a new behavior.  She called this an "alternative behavior".  Instead of gulping, she wanted every time he had to do the swallowing or gulping tic, that instead he should put his teeth together and this would make it so he was unable to swallow.  So, for the next few weeks he was to do this, but at the same time he was to keep track of how often he was doing the tics and that he should tally them in a little notebook.  

So, here we went for the next few days with him ticking more and biting his teeth together and then writing little tally marks in his notebook.  Was this going to help him lesson the tics?  It seemed a little strange, and I continued to wonder why he needed to be made so aware of his tics.  Wouldn't that make them worse?  It did at first, but then it seemed to not be so bad.  Again we tried to document his progress and we waited for the next appointment.  

Tourette Syndrome and ADHD

It kind of made sense.  

Here we were seeing this "Behavior Health Specialist" to help us with our son who had recently been diagnosed with Tourette's, but she was asking us about hyperactivity and possible ADHD.

I mean, Thumper had always been super hyperactive, although I don't think I'd ever go to label him as ADD or ADHD.  Funny to say though, as we sat in this doctor's office for an hour, Thumper could not sit still for the life of him.  He was up and down, climbing on chairs, opening blinds, fiddling with whatever he could get his hands on.  No wonder she was thinking ADHD.

Well, she had given us some questionaires to fill out and one to give to his teacher.  These were full of questions in which you were to rate Thumper and his actions by circling "never", "rarely", "sometimes", "often", or "always".  At home, my husband and I were just laughing as almost every question registered as an "often".  We were thinking, "Gee, maybe this kid does have ADHD."  

From what we have slowly been learning, it seems as if Tourette Syndrome often comes with some other little friends, such as ADD, ADHD, or OCD.  So, sometimes doctors like to rule out ADHD before dealing with Tourette's itself.  

Anyway, we finished our questions and went back to our next appointment to see what the doctor would say.  Actually, among all this Tourette new stuff, we were actually thinking how nice it would be to be able to help Thumper calm down a little bit more.  Seriously, he was soooo hyper.  He had so much potential, but he just couldn't seem to focus.  We had to continuously tell him to do his jobs or practice his piano or do his homework.  He was always getting distracted and messing around.  He always had to be running or spinning or standing on his head upside down on the couch.  It drove us crazy at times.  

Well, we were surprised when we went back to the doctor and she compared our answers with those of Thumper's teacher.  While our marks were many for the "often" or "sometimes" category, his teacher had marked every single question as "never" minus one that she had said "rarely".

It just didn't make sense.  There were even a few questions on there that she had marked "never" in which she herself had brought to our attention earlier in the year.  We just didn't understand.  It was almost as if she wanted to make sure that there was no way we could say he had any form of ADHD.  Or maybe it was as if somebody somewhere was making sure the school was in no way diagnosing Thumper as ADHD.  

It kind of made us mad.  Why would she do that?  Obviously it was so opposite that the specialist couldn't do anything.  

So, oh well for that.  Although it seemed to make sense to us that maybe these tics were a result of having so much energy and hyperactivity that they just had to come out, we would never really know for sure.  At least not now.  Maybe we were hoping to kill 2 birds with 1 stone if that makes any sense.  Maybe we were still stuck on the confusion of where this Tourette's came from anyway.  

So, with ADHD not able to be diagnosed, the specialist went right into focusing on Thumper's tics.