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Laughter, new medication helping family cope with 11-year-old son’s TS

When I picked Ethan up from Nanny McPhee, as we’ve come to refer to her, she handed me our farewell note. After 18 months of watching Ethan daily, our seasoned daycare provider and mother of four — with tween-age children of her own — wrote this before our move to New Jersey:

I didn’t think we were going to make it. He was a challenge, but we made it.

Sterile and hardly worth saving, her note that I kept in Ethan’s baby box reminds me of how I resented her insinuations that Ethan was overindulged and spoiled, and that he was difficult because we gave in to him to easily.

In truth, we were meticulous with a schedule, had read all the baby books, and still couldn’t manage to live peacefully with Ethan, and she reminded me almost daily when I picked him up after work just how long he had cried or how fussy he had been.

It wasn’t until my second child was born that I realized Nanny McPhee, as judgmental as she was, had gotten something right: Ethan was needy, sensitive and impossible to console. To call him a challenging child was an understatement of epic proportions.

When we got our phone number after our move, it included three consecutive 6’s and we would joke that, at least we would remember our phone number, as it matched the mark on our son’s forehead. And whenever my husband or I asked the routine question of each other, “Did anyone call today?” one or the other would quip, “Rosemary called, she wants her baby back.”

Even today, as Ethan approaches his 11th birthday, we laugh in an attempt to make light of a serious and difficult life for our son and our family — and there is no doubt that laughter helps.

Ethan walked late, talked later and by age 3 1/2 had developed some quirks that were strange and difficult to describe. He would stop mid-step, drop to his knees, get up and walk again, back up and take the same steps once again, etc. He would also stop mid-step, jump up and land forcefully on his knees. We put knee pads on him, to cushion the blows and protect his small knee caps, which we thought would surely crack from the intensity and frequency of this act.

He would drop anywhere — in the middle of the street, behind backing cars, in the grocery aisle, and there was no distracting him or consoling him if he were interrupted or kept from completing it.

At this stage, doctors called it GAD (Generalized Anxiety Disorder) and then shortly after, OCD (Obsessive Compulsive Disorder). We called it stressful and confusing. Shortly after he finally started speaking, he would echo his own last words, echo our words and squelched the sound of anyone’s voice with an abrupt, “stop!” holding his hands over his ears.

We would go full days without speaking to him or in his presence because we knew the distress it caused him. Tantrums were frequent and intense, and still go on today, just as frequently and intensely, however, now they are called RAGE attacks (repeated anger generated episodes).

Ethan was diagnosed with Tourette’s, along with OCD, around the time of his 10th birthday. By that time he had a pretty long list of both motor and vocal tics, and these have remained pretty consistent.

He still drops to his knees, however, now he is compelled to lick the ground when he does it. His head throwing, blinking and shoulder shrugging have diminished recently with the use of a drug, Risperdal, but we are currently weighing benefits against side effects, which include fatigue, lack of focus in school, rapid weight gain and insatiable appetite.

The most embarrassing of his tics at this time are the cursing and obscene gestures, and we are working hard to remind him daily that these are not his fault and that he shouldn’t feel shame when doing them.

Tics that are most prominent now are by far the “tics of the mind” that plague him pretty much without reprieve and cause him to repeats words and acts, for as long as it takes until it feels right for him to stop.

We fully understand now the essence of the Touretic OCD and why they call it “feels right” OCD.” Another terribly disruptive “tic of the mind” that Ethan deals with on a constant basis is the competition he imposes on himself while playing a video game until he gets a certain number of points or wins, taking shots on a basketball court until he makes three (or whatever number) in a row, or asking questions of someone until the answer yields a response of “yes.”

Relationships with friends and family closest to him are strained because of the demands he imposes on us — scripting conversations, “Mom, shake your head if I can go. OK, shake it again,” etc. again, until it feels alright for him to stop.

We haven’t given up on medications yet, and have just begun a new SSRI (selective serotonin reuptake inhibitor) called Luvox, recommended for OCD patients specifically.  We are hopeful that we’ll find a medication that can ease the symptoms for him, if only enough to take the edge off the tics, and then, with the help of ongoing therapy, we hope to ride out the storm with as much of his self-esteem and confidence in tact as possible.

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  1. Love to hear that good stuff about the chiropractic neurology. I read an article recently that was very against this idea, while I am very open to it. I am doing a ton of reasearch now as my son is almost 9 and we finally saw a UCLA TS specialist. We have not been down the medication route. I’m not against it if it’s needed, but I am hoping to avoid it if we can find alternatives. Thanks.

  2. For my daughter, those tics of the mind are the worst part of TS! It’s hard for us all 🙁

  3. Our son, also, was a very difficult baby to understand. We thought that the fussiness was initially “colic” for want of a better explanation. Looking back, it is easy to see that his bouts of screaming, as an infant, were caused by over-stimulation. Also a late bloomer, he was always right on the edge of what was the “normal” range, so his pediatrician never seemed that concerned. Then, when his brother was two, and he four, we noticed his brother was speaking in full sentences, and he wasn’t. The red flag went up. First diagnosed with “developmental delays” we started him with OT, speech, and PT, which were a great help in terms of his motor skills and speech, but the moodiness continued. Then, at seven, the tics started. His tics were mainly sniffing, throat clearing, rapid eye blinking, shoulder shrugging and grimacing. He later developed a tic where he would rub his fingers together until they blistered, and a tic where he would stop when walking and scrunch his toes. The RAGE was very hard on his siblings as well. The only medication he was ever on was Strattera for ADD symptoms, but after three years, it didn’t seem effective any longer, so we weaned him off of it. Right at that time, we met another TS parent who told us about a doctor that they were taking their son to, with much success. We decided to give it a try, since we were looking for another option. At this time, our son’s tics were at their worst, all appearing at once. It is a relatively new field: Chiropractic Neurology. We started going four years ago and haven’t looked back. Through chiropractic and balance and focus exercises, our son’s tics are pretty much gone, the RAGE stopped, and the OCD symptoms much less severe. He focuses at school, without drugs, and is doing very well. We have been very lucky to have had a great network of doctors and educators that have really supported us. Hope this helps others who are seeking alternatives.

    • Hi Audrey,

      Would you be willing to share your Chiropractor Neurologists name ?

      Thanks,

      Kevin

  4. I heard from someone online with OCD, that I should not allow my son to ‘script conversations’ for me.
    I tried it and it worked.I refused to say something x number of times.However, most of the time I forget and allow him to ‘script conversations’ for me.Certainly, it would be a good idea to get your son off Risperdal b/c of risks of the metabolic syndrome.I have heard that CBT is the best way to reduce symptoms of OCD, and even internet-based CBT, with in-person or phone support works.What doesn’t work is ICBT alone.
    Here’s what patients have to say about Luvox: http://www.askapatient.com/viewrating.asp?drug=20243

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