cloudy Posted September 5, 2011 Report Share Posted September 5, 2011 Hi Kevin Thats great news! Long may it continue. Thankyou for keeping us updated - its wonderful to hear good news and the improvements you've seen! Cloudy Link to comment Share on other sites More sharing options...
houston Posted September 6, 2011 Report Share Posted September 6, 2011 Kevin, Did your son's nutritionist do any kind of allergy testing to use as a guideline before deciding which foods to eliminate? What types of supplements is he taking and have those changed throughout the year? Still trying to decide which direction to take with my daughter's tics other than eliminating the artificial and most processed stuff. I wish I knew of someone here in Houston who had experience with natural treatments for tics, but that has been a challenge to locate so far. Link to comment Share on other sites More sharing options...
KevinInMA Posted September 6, 2011 Author Report Share Posted September 6, 2011 Kevin, Did your son's nutritionist do any kind of allergy testing to use as a guideline before deciding which foods to eliminate? What types of supplements is he taking and have those changed throughout the year? Still trying to decide which direction to take with my daughter's tics other than eliminating the artificial and most processed stuff. I wish I knew of someone here in Houston who had experience with natural treatments for tics, but that has been a challenge to locate so far. 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. Link to comment Share on other sites More sharing options...
KevinInMA Posted September 20, 2011 Author Report Share Posted September 20, 2011 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. Link to comment Share on other sites More sharing options...
KevinInMA Posted November 28, 2011 Author Report Share Posted November 28, 2011 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.... Link to comment Share on other sites More sharing options...
Cj60 Posted November 29, 2011 Report Share Posted November 29, 2011 Hi Kevin, We identified Cliff bars--always had them in the car for healthy snacks--as a problem food shortly after we started dealing with this. It's hard to explain, because the ingredients are organic and natural, from what I recall. But they definitely did something. Maybe it's the pure quantity of different things that causes the problem. Chris Link to comment Share on other sites More sharing options...
KevinInMA Posted November 29, 2011 Author Report Share Posted November 29, 2011 That's very comforting,Chris. Hopefully we've found the culprit and it'll go away quickly. Thanks for letting me know. Link to comment Share on other sites More sharing options...
KevinInMA Posted December 13, 2011 Author Report Share Posted December 13, 2011 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... Link to comment Share on other sites More sharing options...
Chemar Posted December 13, 2011 Report Share Posted December 13, 2011 Kevin, are you sure there was no strep associated with the sinus infection etc that he had in the fall? Link to comment Share on other sites More sharing options...
KevinInMA Posted December 13, 2011 Author Report Share Posted December 13, 2011 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...... Link to comment Share on other sites More sharing options...
Chemar Posted December 13, 2011 Report Share Posted December 13, 2011 You may want to ask some questions on our PANDAS forum Kevin http://www.latitudes.org/forums/index.php?showforum=17 Here is an excellent website for info http://www.pandasnetwork.org as well as this one, started by the mom of the girl who got a lot of media attention for her long lasting "sneezing tic" which turned out to be strep related http://www.pandasresourcenetwork.org With TS, sometimes tics can reappear with no clear rhyme or reason....but usually if one digs deep, there is a trigger somewhere. With PANDAS kids, even exposure to strep can trigger symptoms. So, especially when tics re-emerge after some type of illness, always worth investigating that avenue! Link to comment Share on other sites More sharing options...
KevinInMA Posted December 13, 2011 Author Report Share Posted December 13, 2011 Thats what I'm going to do. Thanks, Cheri! Link to comment Share on other sites More sharing options...
KevinInMA Posted February 22, 2014 Author Report Share Posted February 22, 2014 (edited) 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 Edited February 22, 2014 by kevininma Link to comment Share on other sites More sharing options...
JaneFBH Posted February 23, 2014 Report Share Posted February 23, 2014 Your posts are so incredibly helpful. Thank you! I am so happy for you and your son. If you don't mind, please take a look at my post KidsCalm/Natural Calm. I am inspired by your story but just need help tweaking my DD's dose. Thank you again and all the best to you and your son. Link to comment Share on other sites More sharing options...
KevinInMA Posted February 23, 2014 Author Report Share Posted February 23, 2014 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. Link to comment Share on other sites More sharing options...
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