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KevinInMA

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Everything posted by KevinInMA

  1. Hi Nate. I'll send you a PM with her contact info. Probably wouldn't be best to put it on here. publicly.
  2. 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.
  3. 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.
  4. 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!
  5. 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!!
  6. 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.
  7. 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.
  8. 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
  9. Actually no, Cheri. In fact I hadn't considered strep as ever being the cause of this. What do I need to do to find out if this is related? It would make sense that he eventually healed the strep last year and thats why he was fine for so long until he got sick again......
  10. Really thought we had something with getting rid of the Cliff bars. Everything went away within about 3 or 4 days. Not it's coming back. So much so that when he was with my mom at the Lego store over the weekend the guy woking there picked right up on it because he was a tourettes kid too. According to my mom, my son and the guy there had a very lengthy conversation about it. I'm worried.... I feel like we need to go ALL the way back to square one. I friggen' hate this. So much...
  11. That's very comforting,Chris. Hopefully we've found the culprit and it'll go away quickly. Thanks for letting me know.
  12. Damnit...... I'm convinced what I'm seeing are the beginning of tics. We did some playing around with his diet but the whole time we insisted on keeping salicylate exposure to an absolute minimum. We incorporated those Kids Cliff bars along with a few other little things here and there. He also had halloween candy, although not much. I'm REALLY hoping ditching the Cliff bars will fix this cuz the eyes are starting to roll again and he's getting the breathing twitch again. It's pretty infrequent and really aren't at tic frequency yet but you know me, I hyper analyze every move this kid makes. So we're back to basics. If this clears up within a couple weeks we'll have to seriously analyze the ingredients of those bars. Damnit....
  13. Welp.... All good things must come to an end.... and thankfully, so far, this one hasn't. Ha! Got ya there! (this better not jinx me!) Actually, there is one thing but it's no big deal at all. For the first time since starting this diet (nearly a year! WOW!) Brandon has taken ill. He got a sinus infection. Personally, I blame my wife for letting her illness go unchecked for nearly a month but whatever. Of course, along with a sinus infection you get crazy sniffles, hacking cough, and itchy eyes. All of these things are that "symptom becoming a tic" thing that I've been so worried about occurring all year long. Well, the sinus infection is still being treated but it looks like none of the symptoms are becoming tics in any way. When he's done coughing after waking up in the morning (you know how that happens, you wake up coughing like crazy and it stops once you clear it out) and then nothing for the rest of the day. I've kept a close eye on his eyes. They're clearly very itchy and annoying but no eye rolling that I've seen. So all in all, for a sick kid, he's doing really well with it. One more highly anticipated hurdle nearly behind us... Phew.
  14. A lot of what she does is outlined in the early pages of this blog but ultimately she uses applied kinesiology (to most people, this is considered voodoo magic) to determine what he needed to eliminate. If I didn't think of this as a last resort I would have walked out but I sorta know what i was getting into when I walked in. His supplement list is also in here in one of the early pages. The only thing that has changed is the amount of each that he takes. She adjusts it now and then. This whole deal was a huge undertaking and is only slightly less of a huge undertaking even 11 months later. It's a lot of work and not for every kid but we were able to pull it off. Hope this helps.
  15. Hey! I just realized that I've left you guys hanging here for months. Well, lets see... What happened this summer...? We decided that since everything was looking so much better, that we'd let him be MORE OF a "normal" kid this summer. If we were going someplace for ice cream we'd let him have the ice cream but try to avoid whole categories of his diet like he can have ice cream now and then but no crazy colors or stuff in it and no cones. We didn't go too much farther than that. We allowed him chocolate and even marshmallows now and then to make smores (which he loves) but I came up with a way of combining the chocolate and his rice cereal into a cracker to take the place of a graham cracker. We made do, ya know? So how'd it go? Well, he had a great sumer. No real tic's to speak of. Seasonal allergy season came and went in the spring and had no affect on him. Then August allergy season came along and we started noticing some eye itching and even some throat clearing. Kept an eye on the allergen levels as reported by the news and they seemed to correlate with his symptoms. None of the symptoms became a regular habit, though, which was nice. He still does it a little now and then but we've got to realize that just because they once were tics doesn't mean they still are. It's hard not to get worried when you see them come along, though. I'm sure in time we'll learn to ignore these things.... So 5th grade started last week. We decided to TRY to go back to a strict diet for the first several weeks of school. 4th grade was relatively easy for Brandon. 5th grade is the transition to middle school. It's a change. We wanted to make sure that if 5th grade became stressful, that the STRESS wasn't what caused the tics so we decided to go strict until the 1 year anniversary of starting this diet (holy crap, a year???). Thats October 15th. Then, if everything looks good, we go for it. Just start adding stuff back in. He hasn't seen Thea in a couple months. I plan to get him in there sometime in the next couple weeks. I should call tomorrow just to make some supplement adjustments and generally check-in. Still, through all of this, not a single cold or illness. CRAAAAZY. SO thats it. No news is again good news. I'm not sure how often I'll be updating this but I really hope it was helpful for some of you. I know it's VERY VERY challenging to try to pull off such a massive dietary change for a kid but I'd like to think we have proof that it works.... for a condition that is largely considered by medical types to be un-cureable. Good luck, everyone. If I can be of any assistance, feel free to email me here.
  16. It's spring and life has been going on. Things aren't bad. There's absolutely no evidence of a cough at all anymore. The eye rolling is very very infrequent. He does a LOT of nose itching but I'm not convinced that thats not just some kind of seasonal allergy. RIght now we're in wait & see mode with a little "trying new things" mixed in. It's summer... I need to let the kid live a little. He's had a bit of gelato, nothing crazy. We ordered him a big gluten free cake for his birthday party next week ($75- yeesh). Umm... We're trying to stick with it but also trying to let him be a kid again. It's still challenging but we muddle through. The fact the symptoms that have historically been a problem are gone is a big deal. The frequent face touching may just be the fact that he's a nervous kid... I found a kids yoga class at the Y that I'm going to put him into this summer. I hope he can learn to relax. Thats the update! Nothing special going on around here just yet!
  17. Wow. I haven't updated in a month!! This is a no-news-is-good-gnu's type of deal. We continue to stay the course. Those symptoms came and went last month. The nose-itching still happens a lot but I'm not sure if we should be chalking that up to some kind of environmental allergy. We find that Gold Bond cream helps so we've put the responsibility on him to keep up with the application of it. If he can get that under control we'll start adding in stuff.... We keep putting it off, though, mostly because we're afraid of the return of the tics. I don't know.... Maybe we're just torturing him needlessly and we can just do it now. At this point we're really not sure what to do. Thea says to keep going with the diet. I don't know what to do. We were considering being very strict at home where he eats 90% of what goes in his body and when he's in a social situation we could let him eat whatever makes him more comfortable in the situation (within reason, of course). Haven't really committed to that,either....
  18. Thanks Cheri. It helps to have others verify my suspicions. We'll be going back to see Thea within the next couple weeks to get him going on some seasonal supplements. She says she frequently uses that same thing you guys do.
  19. Ok. I'm trying to wrap my brain around what is going on here. Its becoming increasingly clear that he has a seasonal allergy that is causing stuffiness and runny nose and itchy eyes and stuff. This results in some throat clearing and coughing and eye movements that are similar to his tics. So I'm wondering if we are working with two separate issues. One being the seasonal allergies causing symptoms and the other being a food allergy causing the symptoms to turn into tics. This seems simple on the surface but just sounds kind of pie-in-the-sky to me for some reason. The cough and throat clearing are nowhere near tic levels yet so I wonder what will become of this as the season progresses... What do you guys think?
  20. Thanks Cheri. If thats the case, does it stand to reason that these aren't actually tics as much as they are symptoms of illness that can be treated in other ways such as allergy drops?
  21. Okay, somebody please reassure me that the reason I'm seeing his eyes roll now and then right now is because he's fighting off a cold. It's really really bothering me. I'm just hoping it's this cold and I need to hear that this is a possibility. Thanks!
  22. Thanks Megan. I guess it's one of those things you just need to gauge when it's happening and go with your gut. @mythree- Your post has me wondering if we're not as out-of-the-woods as we think we are with respect to the nose scratching. I'm going to have to put some more thought into this (in other words- worry about this) and maybe discuss it with Thea. There might be more to it than it seems.
  23. Does anybody want to buy a 16 oz bottle of Natural Calm w/ Calcium Raspberry/Lemon flavor for $25 shipped? Thats what I paid for it and thats half the price you pay pretty much anywhere. It's unopened. I wish I could have cancelled the shipment before they sent it.
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