Mouthpieces/dental appliances for tics and Tourettes

Now that I’m working full time in social media, I’ve learned a heck of a lot. I will share it with you!

  1. I’m not very interested in social media. Sound bites? Twittering? Constantly moving targets that may or may not produce the elusive “viral” content needed for Internet Gold? Not for this lady. I’ll stick to old fashioned content, books and real conversations like the ones we have in the quiet days of, um, you know, conversations. Blogs? Those works, too. I give them an upgrade from Facebook, Instagram and Snap Chat two-second humming bird OOOH LOOK YOU LIKE ME thumbs up signs for comments no one really gives a crap about two seconds after their inflated ego has been pumped up. At least you’re here you’re here on your own volition, not because I was “recommended” to you from a shoe site, pizza Groupon, or tampon ad. For that, I whole heartedly thank you for sticking with my neuroses, ramblings and ranting vociferous vocal spews for the past five years.
  2. When/If my book ever gets done, I will completely, 100%, like a complete hypocrite – do all the aforesaid stuff in #1 for a year until I silently implode and then quit my day job, rent an aqua blue RV, and drive around the country asking you to meet me for coffee and/or an alcoholic beverage – depending on where I’m at on my healthy living journey.
  3. While I might not enjoy the fast pace of social media, I have learned so much from my actual job that I’m grateful for. (And not just because the HR person who hired me stalks this blog. You know who you are, beautiful friend! Don’t fire me. Or do it. I don’t care. I can totally go back to make $15.97/week on my Ebay sales. I’m that talented and flexible!) What I have learned is that creativity and emotion are lovely, but if I don’t show up on time and organize my thoughts in coherent ways that effectively communicate to others, it’s nothing but feral madness. There is a place for research and fact digging. It’s crucial to pause and ask the deeper questions: What articles worked best? Why?

I am applying this “duh” knowledge to my own blog at Happily Ticked Off. While I know, from all your lovely e-mails and notes to me, that you appreciate having a comrade in your tic journey, the biggest stats by far have come from posts that talk about curing tics and Tourettes. (Like this one on mouthpieces that claim to fix TS! By far, this is the landslide winner for Most Hits.)

Not unlike my bosses who cut my paycheck, they want results, and so do you. And so, I have some more answers for you!

A lovely dad, Alan, graciously wrote me about his son’s experiences using the mouthpiece. While he did not see Dr. Sims or Stacks, as mentioned in my first article, he used a new doc that was trained by Dr. Sims. This gives me a bit of hope. Either:

  1. Dentists are taking advantage of desperate parents who will do anything to help their kids.
  2. These mouthpieces just might work for some patients.

As an optimist, and someone who could be accused of being predatory when I begin my membership site this summer, I am in Camp #2. I think there are options out there that make a difference. I believe in good people who want to share their experiences to make life easier for others. If they make a small living at it, good for them.

While the mouth pieces (and most likely my membership site) won’t work for all people, they just might work for some. That’s good enough for me. So, onto the interview …

  1. How old was your son when he saw the dentist for the appliance? “My son was 11 when he saw Dr. Lockerman. Dr. Lockerman is based in Worcester, MA. Wyatt was Dr. Lockerman’s first Tourette’s patient. We had been in touch with Dr. Sims and Dr. Stack. I had emailed Dr. Stack when Dr. Lockerman was there learning about the appliance.”
  2. What were his symptoms? “We first noticed tics when he was about 6. Eye blinking was the first tic.”
  3. On a scale of 1 – 10, how severe were they? “Of course, they waxed and waned. In general, his tics were a 2-3. But occasionally they could be an 8. Those periods would last about two weeks. Those were hard for us.”
  4. How much did tics impact him socially and academically? “Not much of a social or academic impact. Children would ask questions when he tics were bad. He was not open to talking about it. There was some occasional mild teasing. Except for a day or two, it did not effect his academics.”
  5. What did you try before the mouthpiece? “Fish oil, eliminated gluten, dairy, eggs, and other food items, Guanfacine (still takes), another pharmaceutical (don’t remember what), and above all else Brain Balance.”
  6. Were you skeptical of the mouthpiece working? “I was optimistic.”
  7. Were you concerned with paying a consulting fee before going to see the doctor? (Or maybe you didn’t. Dr. Stack wanted to charge me $150 or something for a half hour phone deal.) “I’m not sure that there was a fee. I would have paid it in a heartbeat. I was desperate.”
  8. Did you have to travel? “Only about an hour.”
  9. If you were traveling to see the doctor, how did you do the adjustments? (No answer for this … )
  10. You said your son’s tics didn’t go down right away. Were you nervous about that? “Yes, I was a little nervous. But I was optimistic. There was at least a small immediate improvement. And Wyatt was clear that it made him feel better. He said he wasn’t suppressing tics as much.”
  11. What’s the difference between the tongue depressors and the appliance? “The tongue depressors serve as an indicator that the treatment will be effective. If you put tongue depressors in yours’ or your child’s mouth and the tics improve, then that is a strong indication that the therapy will work. It is worth noting though, that when I put tongue depressors in Wyatt’s mouth, they did not help. When Dr. Lockerman put them in Wyatt’s mouth and instructed him on how to bite down, it did help. So people shouldn’t rule out the treatment just because the tongue depressors don’t work. It’s not that simple. Luckily, a mother whose son benefits from a mouthpiece made by Dr. Demersian (sp?) impressed that point upon me.”
  12. Will he ever NOT have to wear the appliance? I hear the appliance is cumbersome. “The appliance is somewhat cumbersome. But Wyatt did get used to it. His speech adjusted. But he can’t eat with it. That makes him more prone to losing it. I’ve had to search through garbage cans a couple of time. He lost it once and we had to get a replacement. He is now done with the mouthpiece. He is moving on to braces. I am anxious about what will happen now. The mouthpiece broke about a week ago. When it broke before, Dr. Lockerman made a replacement. Two days ago, Dr. Lockerman told us that he can’t fix it because Wyatt’s mouth has grown. He could see that in how it affected the mouthpiece. The mold would no longer fit him. We could start over again. But all along, Dr. Lockerman had been telling us that braces will be the next stage. I could get another mouthpiece, but Wyatt is ready for braces. In fact, he needs them. So we’ve had to select the right orthodontist. Ideally, you would use a ‘functional’ orthodontist. Those are hard to find. There don’t seem to be any in my area. I have hired a highly regarded orthodontist who is intellectually curious and wants to help. He will consult with Dr. Stack on Wyatt’s case.”
  13. Do the tics go away now without the appliance? “Wyatt can go a few weeks without the mouthpiece without a major increase in tics. He’s been without it now for a week. I’ve seen him tic about three or four times.”

Thank you to all of you out there – those I know and those I don’t  – who are so willing to pitch in and be supportive. And, as always, remember that a kid who tics but has personality and soul surpasses a kid who does not tic and is boring. LOVE your ticker today!

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