Our story - from vocal to motor to gone

[Cova]

Hi everyone!  New here, first post, but one my wife and I felt was important to share with everyone here that is struggling with tics. 

I'll start from the beginning:  Our five year old son started a throat clearing tic last December.  At first we thought it was just dry in our house, and tried to help him by adding moisture to the air.  It quickly became one after another after another.  Nonstop.  We knew something was up but tried to ignore it mostly and started doing a little research.  A friend of my wife's suggested it was a tic, similar to what her son had, and that ignoring it would be the best course of action and it would likely just go away.  Unfortunately that did not happen.  The throat clearing subsided somewhat, but in January he started doing a chin stretch of sorts, turning his head to the right and stretching his jaw.  We had a horrible sinking feeling and began researching everything under the sun over the internet, etc.  We are not medical professionals, just two normal working parents.  We bought and read Sheila's book and implemented some of the dietary changes but we weren't seeing a lot of progress.  We eat very well and always organic, but we decided to try gluten free, adding some vitamins, eliminating sugar, but I can't say for certain if we saw any decrease in symptoms.  We no doubt believe this works for some, but it wasn't working for us. We gave it some time, about a solid month+ or so, but the tics remained. 

Then we noticed a new tic.  A shoulder roll type tic that was really noticeable.  Then we started to freak out a bit as we didn't know what to expect next.  "How bad will this get?"  "What's next?"  This was an incredibly difficult time for me, but it was especially difficult for my wife.  The tic was very apparent when he was really excited or involved in his martial arts class, but it was there daily, it was grinding on us as we felt helpless, and we didn't know what to do. 

We researched more and more and booked several appointments with various doctors.  First was a basic throat swab, as my wife's friend suggested it could be PANS/PANDAS, something this friend's daughter was diagnosed with.  He indeed tested positive for strep.  We were shocked as he had zero symptoms for anything related to it.  We began to think it might be that, and booked an appointment with a very well know PANDAS doctor in Illinois.  He believed it was, and had us go on some heavy duty antibiotics to see if that cleared him up.  He suggested that if the medicine lessened the tics, he likely had PANS/PANDAS.  He said if it didn't lessen the tics, we had to do another type of test which I can't recall, and if his results appeared positive there, he had it.  Sort of a diagram type, decision tree chart.  If either of these outcomes was positive, then he suggested our son have his tonsils removed.  Something we were quite apprehensive about as we did not want to put him under unless we knew with certainty that he would be better off with such a procedure.  Since we saw no reduction of tics on the antibiotics, my wife and I ruled out that he might have PANS, however kept it in the back of our minds.  

We then went to see the head pediatric neurologist at a local hospital in Chicago.  While he was clearly talented at his job, and highly educated from the very best schools, he was honest about the little people seem to know about tics and that they just typically go away.  And if they don't, then just medicate when he gets to an age where it might help him socially.  Again, this is not what we wanted to hear.  We didn't want to just "hope it goes away."  We wanted to fix the issue.  Now.  We then went to a pediatric psychiatrist, who again we really liked, but found little tangible, actionable steps to test out.

We felt like we were at the end of the line and were mentally already worried about his future years, high school, bullies, etc.  My wife took him back to his beloved martial arts class and the head teacher asked where he had been and what was wrong.  Reluctantly my wife told him, and the instructor suggested we see someone who "helps all my kids."  Sure, my wife said, and he went on to recommend a functional neurologist named Dr. Matthew Imber out of Lemont, IL.  We didn't know what a functional neurologist was, and saw that there were very few of these types of doctors, but thought why not.  If it will help in any way, we were willing to try.

My wife took him sometime in March or April, and she would tell me every week about the very simple exercises he would have him do.  Looking up and down at dots, she would say.  And other seemingly harmless things that he believed would help.  Over time, after twice weekly visits, then once a week, then once a month, with various types of exercises, I can say that all of the tics disappeared.  There was an incredible amount of progress within the first couple of weeks along.  It was one of those miracle things you read about in the books but don't think will ever happen to you.  He suggested that as kids develop, parts of their brains don't always keep up the way they should, thus causing some tics.  He stated that these cases can be tricky, especially in older kids who will hide the tics in front of him, but he has found success in a lot of instances.  We were in constant communication with him over these last several months, as some exercises seemed to work, some didn't, so we tweaked things along the way.  There's no such thing as too much communication here.

He said that you typically don't see a complete cessation of tics, and that we may need to visit him again in the future during stressful times, growth spurts, puberty, etc. but our son is doing great.  As a parent I'm not sure you ever get that sense of complete relief, like finishing a race or something, but to see him not have any of those tics is something we are unbelievably grateful for and something we felt needed to be shared with this community. 

[Sarotchka]

Can you please share the exercises the neurologist gave your son?  I would be totally grateful.

 

Sarah

[Cova]

They were specific to our son, as I believe the focus was on strengthening the right side of his brain. While the exercises appeared simple and almost geared to kids, I would most certainly not do it justice by trying to remember the number of repetitions, cadence, and exact protocol. And while they did appear quite simple, the vast majority of his clientele were kids and adults much older than our five year old. I truly wish I could simply tell you the things to do to help, but it’s not that straightforward.

Our doctor noted that tic cases differ considerably and there is no one size fits all program. I should note that he also recommended going gluten free and skipping the sugar, with a big emphasis on the sugar. He felt these were two of the big culprits. We had already been going along this dietary route, following the advice setforth here, but continued to adhere to it. 

To speak more specifically to our experience, I recall, after having seen considerable progress, a new exercise being assigned to us at home. After doing these exercises, we noticed that our son started his vocal tic up again at night and couldn’t fall asleep for over and hour st times. This lasted a week or so until we mentioned it to our doctor...who then suggested we simply stop and try something else. Again, although we sometimes felt we were bothering him (he never made us feel that way) over communicating always good for our son and our sanity.

[edsonr]

@cova  I know all those helpless feelings, still going through it now.  Im happy for you and your family that you guys found a solution!!  I hope to get there eventually.

My son who just turned 5, also started in december.....then cleared up in mid march after he was ill with a fever where we treated him with ibuprofen.  He was tic free for over 2 months, then the tics came back in june...and were still in a battle with it.  Hes been flaring the last week or so, a crazy hard 2 leg jump tic....im suprised he hasnt complained about soar legs.

Hearing success stories like this keeps my spirits up and motivated to solve our puzzle...thanks for sharing!

[Cova]

@sarotchka Reposting this from another thread.  I should have been more specific to begin with.

Re: specific exercises. 

The first thing the doctor keyed in on was whether the tics were happening on one side.  I.e., was the chin stretch, shoulder roll, etc. predominately occurring on one side.  He said that if that was the case, which it was, the chances of success in the reduction of symptoms was much greater than if they were happening on both sides.  

A couple examples of treatment:  He placed a little "hat" on our son that had a light attached to the center, that was basically in the middle of his forehead.  He then sat our son in front of a large picture with dots placed throughout.  He gave instructions to follow the dots slowly up the center with the light, and then to one side.  When my wife first saw this she really didn't know what to make of it, but she went with it as he gave hope that we didn't need meds to see improvement.  

Another exercise that we did for a long period of time, which we only do once a week now, is something called Brain Beat. He suggested we buy this online after we had already seen considerable improvement. Apparently the exercise itself has been used for a fairly long time, but now in a fun, video game-like way.  You put on a set of headphones and a glove of sorts with a clicker button on it and basically try to clap to a continuous sound.  You can beat levels, etc, and each session was no more than five minutes.

There were others too, but my wife was there each time and has a better memory of each exercise.  But bottom line was they were very low impact, but helped immensely.  

 

 

[Sarotchka]

Thsnk you so  much for sharing!

[nrr]

Is this similar to neurofeedback therapy?

[Cary]

Hi, Cova,

Our almost 5 year old daughter started eye blinking and squatting tics almost two months ago in mid July.  Because she suffers from frequent cold sore infections and had one prior to the tics starting (and also had a brief strep infection that was treated with a 5-day z-pack in the beginning of August), we have also seen a gamut of physicians including pediatric neurologist (who diagnosed with transient tic disorder and advises to just wait it out) as well as Pandas/Pans doctor (Dr. Trifilleti of NJ who ran tests for strep, mycoplasma, and coxsackie but no antibodies were elevated for any of these).  After we read your post, we sought out a functional neurologist in NYC and had since Tuesday (a mere 4 days ago) two, half-hour sessions with the functional neurologist. 

We noticed an immediate meaningful improvement in tics after the first appointment which were sustained (for the most part) for the remainder of this week. I am grateful for that, since this past Thursday was the first day of school (Kindergarten).  However, for some reason, today (Saturday), the eye blinking tics came back relatively severely during lunch time. I am just curious about your experience - did you notice a consistent improvement, or were there times of regression? Did you notice any correlation with sickness? With stress? The functional neurologist did give us "homework" exercises to do three times per day which we have been completing religiously (given that I would almost sell my soul to the devil at this point to rid her of these tics.)

Also, the functional neurologist recommends an "intensive" session which would be 3 hours long (with breaks in between, of course). He feels they would be more effective.  Do you mind me asking how long your son's sessions were and how frequent?  

Even though these are "just tics", this has been one of the most stressful and anxiety provoking experiences I have ever encountered in my life.  So I definitely welcome the perspective of any parents who have gone through it and came out the other side alive and stronger.

Thanks!

 

[PinkMom]

Hi Cary,

which functional neurologist do you see? 

[Cary]

Hi there,

We live in NYC so we went to see Dr Eric Kaplan.

[Cova]

Just saw this after @cary sent me a message.  Apologies if I am not more responsive!  My response to the message, please tag me if you can.  That prompts an email notification!  

 

Yes, there is/was/will be regression.  Our doctor, Dr. Imber, said that this is completely normal and should be expected.  Growth spurts, stress, colds, bad sleep, etc, can all trigger it.  We noticed some regression recently, but that was also due to a looming first day of kindergarten and a light cold we were passing around (at least that's what we attribute them to).  

But from where they were, what he is experiencing now is almost unnoticeable to anyone else besides us (who watches quite closely, as I'm sure you can imagine).  The shoulder roll is gone, the chin tic is all but gone (he tends to do it a couple times if we are reading to him), and the constant coughing/throat clearing is also gone (which was most prevalent while he was eating).  What we see now are little fidgety movements, fidgets with his fingers a bit, however they are really not anything to be concerned about (even though we continue to watch how they progress).

The great news for you, in my opinion, is the immediate improvement.  We had that too, and were in disbelief.  We did notice in the very beginning that he would regress more the longer he was from the last session.  So I'm not at all surprised to hear of your experience. 

We went weekly for an hour in the beginning, and then did our homework as well.  The results were remarkable, however he did still have some bumps in the road along the way.  I think I mentioned in my post about some "homework" that did not seem to help him, as he began to cough more, so we told our doctor and he just said to cut it out.  It was an iterative process.

As we saw more progress we went to once every two weeks until we had a month long break.  We went consistently for around 3 months or so, but never had an intensive session.  If they believe an intensive session will work, I would absolutely do it. 

[MLee]

Hi Cary,

How is your daughter doing?

[Cary]

Hi,

An update since my last post - since starting the sessions with the functional neurologist, I would say that her tics have improved.  Initially, she all but stopped the squatting tic and continued with blinking (although less frequently.)  Over the last week, there was a switch where the squatting tic came back but the blinking was almost gone.  However, given the short timeframe (about 2 weeks), I'm not sure if the improvement can be attributed to the exercises with the functional neurologist or just waxing and waning of symptoms or other factors. 

[vvny]

Cary

How has the improvement been for your daughter so far ? We are scheduled to see Dr. K today. 

[Starfish]

Can anyone share how to find a doctor like this? Would they be called a functional neurologist or something else? I’m in southern ca but would be interested in trying this for my son.