KevinInMA

Hi Nate. I'll send you a PM with her contact info. Probably wouldn't be best to put it on here. publicly.

It started off mild like most do and then progressed but then it waxed and waned for a couple years. We did just the opposite of what you should do. We made a big issue of it and frequently told him to stop. We really had NO idea what we were doing in the beginning. We're taking the opposite approach with my daughter and so far so good. Just keeping it chill. Like yeah, sorry honey. No ketchup for a few days. Here's something else. We don't really talk about it much so as to limit her concern about it. Keeping it light is very important, in my opinion. You don't want to stress out your kids about this. It only serves to make it worse. Just namaste.

I don't know if I ever wrote about this, but we started off following the same route as everyone else. Start off with the PCP who tries a few things then sends you over to a neurologist who tries a few things. That took several months. It was during the neurology step where things went really bad. We had the world's worst pediatric neurologist. She started him on Clonidine which turned him into a zombie for half the day. The other half of the day he was manic. She switched him from the pill to the patch so he was more even keeled and gave us no instructions on how to make the transition. Long story short- we nearly killed him. The neurologist's malpractice nearly killed him. He was in Children's Hospital in Boston for two days to stabilize him after what was ultimately an OD. It was and remains to this day the lowest point in our lives. We abandoned that doctor in favor of doctors from Children's but that was pretty short lived. I wasn't willing to continue drugging him. It was the Children's doctor that rolled his eyes at the prospect of addressing it through diet. I knew Thea from a former business relationship I had with her. I knew her practices were VERY VERY weird (I still think they're weird) but ultimately, I was willing to try ANYTHING at this point. We made our fist appointment with her and the rest is in the blog. Her screening methods are unorthodox but I just let her do her thing and followed along. None of her methods were scientific. I didn't care. I was done with medical science by that point. We were working on hope with this one. Sometimes hope leads to progress. In our case it worked. I'm sure it's not the same for everyone, though.

It's very scary the first time around. I feel your struggle. After 5 years tic-free, it was also kind of scary to recognize that my daughter had started experiencing tics. But then we realized that we know what to do. So far it's been manageable. Hopefully it stays that way. Doctors may tell you that these things are only treatable with medications. For us, that was just not true. The neuro even rolled his eyes when I told him I was seeing a nutritionist rather than treating it medically. They have their schools of thought and not all of them are based in reality. You're taking the right path. Good luck!

Hi everybody, I received an email today asking for an update. I haven't really revisited this site since... well, apparently 2014. Seems like an update is overdue so here goes! My son is now 16 and, although we've seen one head-nod tic come and go, he's mostly got it under control. I don't really have any control over what he eats at this age anymore so I try not to worry about it. He tells me not to worry about it so I don't. He's old enough to take responsibility for himself now. On the other hand, my daughter (10) developed the same symptom as he did at that age, but so far no where near as bad. For the past 18 months or so she's had an eye-roll tic that really hasn't progressed, thankfully. We've limited her intake of salicylate but chose not to go full-elimination the way we did with my son. She would not be able to handle it the way he did. Every time we get a little more strict with her intake of salicylate-rich foods, we notice an improvement. Unfortunately, we just don't have the fight in us that we used to have and her symptoms are minor so far. Hopefully they stay that way. Fun fact- For a while now (several years) I've had shoulder pain and tension that I'm now starting to believe are exacerbated by a tic of my own. I've finally saw an orthopedic who seems to think it's related to a pinched nerve in my neck, instead, but I'm not fully convinced. Tomorrow is my first physical therapy appointment for massage therapy. Hopefully it's that any not a motor tic causing these problems, but who am I to pass up free massage???? The human body is a crazy thing. There has been a LOT of progress made on salicylate research. I haven't kept up at all, though. That really would be a great place to start, though. Sensitivity to salicylate is a real issue and if learning about this one thing keeps someone from going through the massive elimination diet that my son went through, that would be a huge step in the right direction. Hope this helps!!

Hi! Currently he's eating normally. He doesn't eat a LOT (but really should eat a WHOLE lot more given his level of activity) but what he does eat is a mixture of healthy food, normal food, and complete junk food. Over the past couple months we've really become laced on his supplements. We really should get back into it but I'm so sick of reminding him twice a day to take his pills. 12 years old and still needs to be reminded twice a day to take pills. Come on.... It's hard to tell which ones made a difference with his tics. I'm pretty sure Natural Calm was a big help. Other than that I'm fairly certain most of what he was taking was just making up for what he wasn't getting from his massively limited diet.

I really wish I could remember how much NC we used. I THINK it was a heaping tsp twice a day but the real way to know is to slowly up the dose until your daughter experiences the stomach/stool issues, then back off. Everyone reacts a little differently to is so there's really no one dose for all. I hope you find it helpful! We haven't used it in a year or so.

Wow... It's been over two years since I last posted! How did I ever let that happen??? Well, for anyone that remembers me, I put my son through quite the dietary ordeal to try to manage his tics. If this blog is any indication, it was pretty darn successful. Since my last post, we continued working the diet and his tics continued to be absolutely minimal. We realized, though, that at some point we'd have to test the waters. In April 2012 we took a vacation to Disney and decided that this was going to be the point where we start to let him live again. We turned everything back on. He was once again allowed to eat like a normal... (how old was he then??) 10 year old. As time went on, nothing happened. Nothing changed. He kept being "fine." Then, a year later, he hit 6th grade and his stress level went through the roof. School got a little tougher. Social scenes changed. He became a tween, but a tween that was quite a bit less "mature" than his peers. Socially, things got tough. At the same time, "stuff" started showing up. 6th grade didn't go well. He struggled in every aspect; academically, socially, you name it. We met with his teachers several times to see what could be done to help him. Tics returned but nothing like what they were pre-diet. Or biggest concern was that they WOULD return to pre-diet levels. So we struggled through several months until his guidance councilor made a simple recommendation- a psychologist that worked with her own son. Last April (2013) we began seeing Dr. Stephanie Sydney in Danvers, MA. If nothing else, Dr Sydney is ALL BUSINESS. She digs in and gets right down to business. She identified all of the issues that needed to be fix and developed a multi-step plan on how to make it happen. We still see her every week. She's an amazing influence on him. She's taught him how to relax. How to free himself of acute and chronic stress. She's encouraged him. She's pretty much stopped his nail-biting. She's even hypnotized him (His favorite part). The brakes were put on all of his tics (except the nose rubbing, which we're still not sure is a tic) within a couple months. He started 7th grade in the middle of all of this- 4 months after he started seeing Dr Sydney. He immediately began to thrive academically. 6 months later, he's still thriving. The change over one summer was miraculous. He's become a scholastic super star. He's set his sights on private high school and at this rate it's looking like a totally viable option. We owe a lot to Dr. Sydney and hopefully he can continue to see her indefinitely, even though his schedule is even more ridiculous than ever. It was fascinating reading back a couple years into this blog. It was a scary read, actually. Almost like I wasn't actually living it at the time. Glad to have put that behind us, hopefully forever. Hopefully, too, our journey has been able to help others. -Kevin