Meeting with the Tourette's Support Group

So confused of what we should do or not do with Thumper and his tics, we looked forward to our first real meeting with our local chapter of the the National Tourette's Syndrome Association.  This could be a chance to really talk to others and ask questions.  

We met on a Tuesday evening and right away it was very interesting to see the majority of these parents with kids with Tourette's all had kids in the 4th grade just like Thumper.  It was a small group that night, but there were 3 sets of parents each with a 4th grader, and then there were some adults with TS as well.  

Here some of the tics were kicking, jerking, coughing, head bobbing, laughing......I kind of felt guilty bringing Thumper there when his tics seemed so mild as compared to some of these other kids.  But it didn't matter.  I guess they were all different but all in the same boat.  

I began asking about this tic reversal therapy and medications.  The group didn't say much about the therapy, but they said sometimes it works to make a more noticeable tic less noticeable.  One of the young adults there with TS said he used to always have to raise his hand up as one of his tics and he didn't like it because people were always calling on him in class.  So he was taught if used an alternative behavior, such as touching his finger to his nose, that it would satisfy the need to do that tic, but it was less noticeable and he wouldn't be called on in class all the time.  This made sense to me.  I guess Thumper's tics were a little different, but true, he had told us himself that sometimes he could touch below his nose in a way that would relieve his nose scrunching and face scrunching tic so he wouldn't have to do it so much.  

When we brought up medication, it was interesting.  A lot of the parents already had their kids on all sorts of medications, but it seemed like these kids had a lot of other issues.  As we continued going to these group meetings, we found out that Tourette Syndrome seemed to be the lease of these kids' problems.  These other kids had ADHD, ADD, anger management issues, behavioral problems, learning disabilities, and more.  So really, they were already on all these drugs.  Some of the adults spoke about trying different medications over the years when they were growing up, but they all spoke negatively about them.  The consensus in the end was that all the medications made them feel out of it or too tired to live their lives.  They said some helped a little but would stop working, or some didn't notice any improvement, but just made them fee out of it.  

So, nice and supportive as this group was, I don't know that they really helped me with the decision on what to do with Thumper.  Well, they did make me feel that medication was not the way to go just yet.  We would have to look into something else to help Thumper.   We went out and bought some melatonin for him to use at night if his tics were acting up at bedtime.  

Tourette Syndrome; To Medicate or Not to Medicate???

We found a psychiatrist who also was a licensed physician's assistant who was new to our pediatrician's office. We thought we could take Thumper in for an evaluation to see what this doctor thought.  Now, we weren't looking to medicate our son, but we thought it would be nice to see if there were any other options out there to help with his tics rather than all this alternative behavior stuff that really didn't do anything except make Thumper obsess about his tics more.  

Thumper had gone through an awful week of ticking uncontrollably and crying every night and complaining about the pain.  With his nose scrunching so often, he was getting a lot of nose bleeds as well.  

Of course, then comes the waxing and waning of Tourette's yet again, and by the time his doctor's appointment came, he was pretty mild with his tics.  

OK, now don't think I'm a crazy mom or anything, but really I wanted Thumper to be ticking a little more crazily.  No, I wish he didn't have to tic at all, but when you are taking a child to the doctor, you don't want them to think you are one of those hypochondriac moms who are making stuff up about their kids.  How could the doctor believe me or see that it was so bad if Thumper wasn't ticking that day?  Or what if he did what he did the last time we went to the pediatrician and tried to hold his tics in?  I had a talk with Thumper and told him that we were going to the new doctor to help him and that he needed to let his tics go so the doctor could see to help him.  I felt kind of bad saying this though.  It was almost like I was telling him he needed to tic.  So contradicting to what we wanted for him!

Anyway, we met with this new doctor who evaluated Thumper.  We filled out all these tests and paperwork while he met with Thumper and then we were allowed in to see what he had to say.  This time it was interesting.  

While before with the doctors and neurologist, they had said it wasn't a big thing and they insisted on going to this behavioral health specialist to work on brain reversal techniques to help control tics.  Before, all we were doing was being put into therapy sessions to help teach other behaviors instead of the tics, or a lot of the time we were just documenting when and why and how long the ticking was occurring.  

But this time the doctor comes right out and starts telling me different kinds of medication that we can give Thumper.  Just like that.  I was really surprised that a doctor would just say, yep, this is how you can fix him with a bunch of drugs.  He is like, well, you have 3 options, 1-you can give him this drug, but it is for major anxiety.......(and I'm thinking, he's not anxious, he's just anxious when he can't stop ticking), or 2-this other drug that is used for high blood pressure and ADHD, but has some effects on lessoning tics, or 3- there are some more herbal medications.  He goes on to explain the drugs, and one is an as-needed drug, but it is pretty much a sedative, so I don't want to give him that to put him to sleep.  The other one he has to "build up to " a full dose, and would have to take it for so long and if he wanted to stop then he would have to be weened off.  

I told the doctor I wasn't looking for some full time drug.  Wasn't there just something that could help him when his tics became uncontrollable that wouldn't knock him out?  When he went through days of little tics, I didn't think he needed to be drugged up.  But no, the doctor said there really weren't any drugs that had been made specifically for Tourette's and that all the medications were for other things just some of them helped with Tourette's.  I did kind of like the idea of the ADHD drug because maybe that would calm Thumper down a bit, but from what I heard, it made the kids really really tired and I didn't want Thumper walking around like a zombie.  I asked more about the herbal solutions.  He said we could give Thumper melatonin at night to help relax him and help him to sleep better.  He suggested that Thumper's tics were worse if he didn't get enough sleep.  Of course, I knew this wasn't true as his tics were sporadic whether or not he had 10 hours of sleep or 6.  

Well, I didn't know what to do.  Yes, I somewhat went into this doctor with the idea of seeing what kind of medicines were out there, but I didn't expect to just get a "Hi, here's a bunch of drugs, try this" approach.  I think I wanted some other options as well.  OK, maybe I didn't know what I wanted.  The therapy bit was just useless to Thumper, yet I didn't want to just drug him up.  What did we want?  What should we do?  I didn't agree to anything and just made a follow up appointment and decided to go home and talk things over.  

The Waxing and Waning of Tourette Syndrome

Doctors had told us that Tourette's Syndrome had kind of a "waxing and waning" effect with tics.  This meant that maybe one day Thumper's tics could be pretty mild, but then another day they could be going wild.  We soon found this out the hard way.  

We took a trip to Arizona to visit family and Thumper was pretty calm most of the time.  He was still gulping and scrunching sometimes, but our family didn't notice it at all.  One thing about Thumper though, is that he is so hyper and running around all the time or screeching or whatever that most people don't notice any of his tics.  It is only in more quiet settings or when you are close by that you would hear his tics or see his facial tics.  But anyway, our trip was pretty mellow, and Thumper was doing fine.  He didn't complain once about his throat or nose hurting because of tics.  

Well, that changed when we got home.  It was a month before school was to start for the fall and all of the sudden Thumper was going crazy.  His tics went haywire and he was out of control.  He was gulping and swallowing and clearing his throat and scrunching up his face like crazy.  

And then there came a new vocal tic.  

This one was somewhat creepy to me.  It was this weird clicking sort of noise or more of a regurgitating type of noise that he would do in his throat.  It reminded me of the way a frog would blow up their throat and make that little croaking noise or something.  In turn, we called this the froggy tic.  It kind of grossed me out.  He started doing this over and over.  Well, it would go gulp, clear throat, froggy tic, or sometimes just froggy tic over and over or gulping over and over, but soon Thumper wasn't just doing it occasionally, he had lost control.  

I remember sitting down with our family to watch a movie late one night and having to turn the volume up louder so we could hear the movie over his tics.  You would think that watching a movie would relax him and he wouldn't be ticking so much, but it seemed to make it worse.  He was gulping and clicking like crazy and it was really difficult to watch the movie with all of it.  It makes me feel bad to think such a thing, but really it was kind of annoying.  Nobody wanted to sit by him.  Poor kid.  

Still his ticking got worse.  At night he was freaking out.  We would go in his room and he was almost causing himself to hyperventilate.  He was ticking so much that he almost couldn't breath.  He was crying as he couldn't stop gulping and swallowing and throat clicking and he just wanted it to stop.  This is when Thumper began telling us that he wanted medicine to make it stop.  He said it hurt so much and he just couldn't stop it.  

Then, what do you do?  Just last week we thought he was doing fine, and now all of the sudden he was in so much pain and so sad.  We had tried the whole "alternative behavior therapy" stuff  (I'll refrain from saying "crap"), that didn't do anything, but we we didn't want to go to medication.  We had read such awful things about it.  But here was our son so sad and freaking out.  We needed to do something.  So the next morning I began looking into finding a new doctor for a second opinion of how to help Thumper.  

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.