My eight-year-old daughter was diagnosed with TS and OCD in August 2011. (Well, I diagnosed her based on what I read online and the neurologist confirmed it.) I spent the next four months in hell, obsessively researching, trying everything (with no results) from going gluten free to Bontech vitmains to Tenex to cranial sacral therapy to play therapy. I didn’t want anything to do with the other hard-core drugs, having read absolutely awful things about their side effects.

I fell into a deep depression as I watched her tic (coughing—all day long, blinking, and shoulder shrugging—all day long were the most prominent) and tried in vain to comfort her through her initially wildly uncontrolled anxiety around vomiting and terrible time with both falling asleep and staying asleep through the night.

I promised myself that if I was ever successful in helping her I would share my story in the hopes that some other desperate, confused and pained mom like me might be able to help HER child.

Here’s what changed everything:

OCD: I had read enough that we had begun to call the OCD voice in my daughter’s head that made her so worried about things “The Mouse.” Every night she would start in about her list of ailments and I would explain that was the Mouse talking and the Mouse lies. I also took her out of play therapy and got her in to see an experienced Cognitive Behavioral Psychologist specializing in childhood OCD. Within one week she was sleeping better (her told us to short her sleep by one hour). For the first month, we continued with the melatonin we had been giving her nightly and then slowly weaned her off over two weeks. We launched into a comprehensive exposure therapy program, rewarding her daily for her things like not coming into our room in the middle of the night, and graded exposure to stories about throwing up, movie clips of throwing up, and eventually videos of people actually throwing up. We moved on to other things she’s been anxious about for years….like pooping on the toilet without using a potty seat (she was afraid she was going to fall in), wearing jeans to school, and shutting doors and drawers all over the house. She was told to stop asking “Am I OK” (the compulsive part of her Obsessive/Intrusive thought about being sick). The doctor explained that every time she gave voice to the Mouse she made it stronger and every time she resisted she made it weaker. Eventually, if she stopped giving in to the Mouse, the Mouse would give up.

This connection turned out to be key to tackling the tics as well….


TICS: The psychologist told us that it would take 4-6 months to work on her OCD and anxiety and then another 4-6 months to take on her tics through Cognitive Behavioral Therapy for Tics (CBIT)….which I had read about online but hadn’t given much credence to. One day about six weeks into her OCD therapy, my daughter came home from school with another tic…a head jerk that followed her shoulder shrug. I broke down crying….thinking this was only the beginning of how bad it was going to be and feeling completely helpless that there was anything I could do to help my little girl. I then pulled myself together and went to talk with her. I explained that from what I had read, it wasn’t the tic that was involuntary, it was the URGE to tic that was involuntary. I suggested that while simply resisting the urge likely wouldn’t help because the urge was too strong, we could try to REDIRECT the urge into another movement that was incompatible with the tic (this used to be called Habit Reversal Training). I explained that the process was exactly the same as we were doing with OCD….thwart the impulse with the intention of making it weaken and eventually disappear. Because she’d had so much success with the OCD, I think she believe from the outset that this would work for tics…even if I wasn’t so sure.

While it is usually suggested to start with the most problematic tic (which in our case was the constant coughing) my thought was to start with the most RECENT tic because it was the one that had the least time to become ingrained in her neural pathways. Since she’d only had the neck jerk for less than 24 hours, I taught her to slightly incline her head whenever she felt the urge to jerk backward. WITHIN ONE HOUR, not only was the head jerk gone but so was the right shoulder shrugging (which she’d been doing nearly constantly for a month). Apparently, the movements were related and when she redirected one the other stopped too. On Friday she listed her urge to tic like that as a 9, one Saturday, a 6, on Sunday a 3 and by Monday she no longer had to incline her head! THREE DAYS and gone.

Flush from our success, we next tackled the cough…which I expected to be harder since the muscles aren’t as easy to isolate and because she’d been doing it much longer (between 4-5 months at that point). I taught her to do a diaphragmatic breath (deep belly breathing into her nose and out of her mouth) every time she felt the urge to cough. For two days we worked on that. On the third day I told her to take a notepad to school and count how many coughs she “caught” (i.e. redirected). I told her teacher what we were doing so she wouldn’t get in trouble for scribbling in her notepad in her desk. I promised her one dime for every cough she caught and explained that I expected the number to get lower each day as the impulse lessened.

On the first day she caught 120 coughs in seven hours at school. I praised her and paid her $12. (I had expected to give her around $2). The next day, she had 37 little marks in her book ($3.70). On the third day, she came home and proudly showed me the ZERO in her notebook. She hasn’t tic coughed since. The whole process from initiation to that zero took five days.

There are no words to explain my joy that there is something we can do to help her! This has changed our lives….not that she doesn’t still suffer from anxiety and not that she doesn’t still tic (albeit very mildly at this point…throat clearing, sniffing here and there) but it was the powerlessness that killed me originally. And now my daughter feels supremely empowered. She got another blinking tic after this and I taught her to hold her eyes open and look slightly up for 10 seconds when she got the urge and she kicked it in one day. I know more tics will come but now we know what to do about them. And, most importantly, she believes she can handle it. It’s taken something that could have been socially and psychologically crippling and turned it into a nuisance.

We’re continuing with the psychologist to continue with the anxiety issues, but she’s already like a different child. He told us that he’s never seen progress this quickly in 25 years of working with kids. I know we got lucky, but BOTH of us (my daughter herself and I as her coach) also worked REALLY REALLY hard. (I do recognize that she may be having an easier time of it because we found something that worked BEFORE she had a whole bunch of emotional baggage attached to her condition and BEFORE the behaviors became too entrenched both psychologically and neurologically.)

Be that as it may, for some of you out there…I took the time to tell this LONG story in the hopes that this might help you too. I tried to post three links I found particularly helpful regarding CBIT/Habit Reversal but haven't been a member here long enough to do so....I'll post them as soon as I can. Or you can message me for them.


Please feel free to write to me with questions. I would do anything to help another parent or child feeling the same fear and confusion that I was feeling a couple months ago.

All my warmest wishes,
Michelle

Hi Michelle
glad to hear you found help for your daughter

I just wanted to mention that CBIT is Comprehensive Behavioral Intervention for Tics not Cognitive Behavioral Therapy for Tics

Cognititive Behavioral Therapy is CBT and is somewhat different, and usually a treatment for OCD

I do know of some people who have TS and who tried habit reversal therapy, and actually were not helped by it as, for some, bringing focus to tics seems to cause them to involuntarily increase. A few mentioned that they actually found the results very negative, and one found a spike in OCD after trying it.
I always struggled with the term "habit reversal therapy" in TS because TS tics are not "habits"...they are involuntary neurological reactions.

Also, some kids tic for a variety of other reasons and need nutritional, anti-allergy and other interventions, including those who tic because of strep infection (PANDAS) who need antibiotic and other intensive treatments.
So again the old adage...what works for some does not always work for others

Hi Chemar...

I've seen your name often in my obsessive reading and I so appreciate all you do for parents like me.

Sorry for my mis-typing the acronym....it was late last night when I was writing And yes, "Habit Reversal" is an old term (that's why I said "used to be called") that has been rejected for just the reason you mention but I referenced it because it's all over the place in the research. Also CBIT includes lots of other stuff in addition to the redirection technique that we didn't really try because we didn't end up needing to.

Yes...I know well that what works for one person doesn't always work for another. When I was pouring over message boards looking for success stories, I tried so many things for my daughter with which others had had great success but did nothing for us. In fact, I tried YOUR vitamin therapy regimen that you posted that helped your son! No luck.

I absolutely realize that this may not work for everyone but if it helps even one family, it's worth my posting.

Happy New Year!

Michelle

Absolutely agreed and one of the reasons I started telling of what helped my son. Paying it forward! If Bonnie Grimaldi had not shared what helped her child, I dread to think where mine would be! He hardly tics at all anymore, and the OCD is subdued. So I know the relief you feel!

Happy New year to you too and do keep us updated

Hi everone. I can't believe I am once again writing about a child with TS - but it looks like I am. As a matter of backgraoud, my oldest son (now 32) was diagnosed at age 7. Through the old MGH TS forum, I found wonderful knowledge and (most importantly) support. Through that forum, I also met the wonderful man who is now my husband. (who could have figured!?)

2 1/2 years ago we adopted our 2 kids (my biological grandkids). Our little daughter - now 7 - started with a eye twitch about a year ago. She is now having vocal tics. We plan on taking her to the pediatrician in the near future - a formality, but I think important to get it on record.

My husband - who still is quite the ticcer - and I want to avoid meds. My oldder son "outgrew" his tics mostly, but he has a lot of psych issues. I sometimes wonder if the meds he was on might have even contributed to some of his struggles today.

I appreciate reading some of the alternate ideas here. I don't know where we will end up with, but I guess it (once again) feels good to have a place to talk about it when I need to.

Although I have been down this path before and hubby LIVES it daily - I still feel almost like a novice. I can't help feel some anxiety for what things may lie ahead for her.

I just wanted to write this down and thank you for your ideas, experiences and prayers.