pasha20

Hi, I'm from Waukesha, Wi and just read your post. My daughter was in the process of being diagnosed with Tourettes early last year, so I wanted to share with you our journey, as she now has minimal tics, so minimal that the average person would not even notice. We started noticing very minor motor tics in my daughter around 2nd and 3rd grade...nothing major, just some raising of the eyebrows and other minor facial movements. During the summer of 2009, right at the end of 3rd grade, her tics took a turn for the worse. She started head and neck jerking, painful enough that we had her treated by our chiropractor once every week or two. We started her on Tic Tamer, which seemed to help lessen the motor tics a bit. A few weeks later, the vocal tics started. They ranged from throat clearing, changes in her vocal pitch, and eventually loud bark-like yelling. I had her bloodwork sent down to the University of Oklahoma, where it was tested for PANDAS. Her titer levels were consistent with other children with PANDAS, but we were never able to get a neurologist locally to diagnose her with it, nor treat her for it. She was seen by a top pediatric neurologist in the area, who prescribed her with Clonidine. By Labor Day weekend, the swearing tic started. I pulled her out of school for 2 days, terrified and feeling helpless at the same time. The principal wanted her back in school, and ended up having a presentation with both 4th grade classes to educate the children on her disorder. My daughter and I both cried many tears during that presentation, even more at the end, as the kids started welcoming her back, telling her how much they missed her, and all asking if they could sit next to her at lunch. Those 2 classrooms of kids banded together and protected her from the teasing of others. It was comforting to say the least. The side effects of the Clonidine were starting to affect her in school, as she was falling asleep. Her personality was also not the same anymore...my energetic, talkative daughter was now coming home from school and simply falling asleep on the couch. Tired of the side effects, we eventually switched her to Topamax. This seemed to help a bit, but not much. We tried eliminating gluten and dairy with no changes in her tics. I also had her allergy tested, which only came back with grasses. I was introduced to Isotonix OPC-3 (a very strong antioxidant) by a neighbor earlier in summer to help my oldest son with his allergies. By the end of September, she urged me to try it with my daughter. As skeptical as I was, I figured I had nothing to lose at this point. After 3 days on the OPC-3, the swearing tic stopped completely. By this time, she was now seeing a new pediatric neurologist in the area that specializes in movement disorders. I tried explaining the approach that we were trying, but we were instead told that we should now stop the Topamax, as it was suppressing her appetite. The only suggestion I was given to treat her remaining vocal tics was to put her on heavy medications, and these came with hefty side effects...risk of a permanent tic disorder, risk of an allergic reaction that would require a trip to the ER, and she would need to have cardiology tests done prior to and every 3 months after beginning the medications. I knew at that point my only option was to stick with the nutritional supplements, and find a way on my own to help my daughter. I then started diving into research on how her diet may be affecting her, as she still had some vocal tics, which also consisted of stuttering her speech. We eventually started eliminating as much of the food dyes as possible, along with nitrates, High Fructose Corn Syrup (HFCS) and caffeine. I gave Bonnie's Vitamins a try for several months...my daughter was a trooper about having to swallow so many pills a day. I found out the hard way that fish oils are not good for vocal tics...quickly switched her to a flax seed Omega. Fast forward to today, she takes only the following: Isotonix Might-A-Mins Spectrum OPC-3, Isotonix Might-A-Mins Multivitamin, a Flax Seed Omega, and Advanced Co-Q10. Her speech is now very fluent, her personality is beautiful, witty and shining. I cannot think of the last time I saw a motor tic. She continues to avoid food dyes, nitrates, HFCS and caffeine. We shop at Good Harvest if she ever asks for salami, bacon or beef jerky. We switched to organic meats, eggs and milk to avoid the hormones and antibiotics. We carefully read labels, and believe me, food companies are catching on - many will display "no HFCS" right on the front of their packages. There are plenty of name brand products that you can buy that are "safer" than others...ie: Breyers Ice Cream, Log Cabin Syrup, Hormel lunch meat with no nitrates, Oscar Meyer Angus Beef hot dogs with no nitrates, bakery cookies, Sierra Mist Natural soda or Jones Cream Soda, etc. It does take time in the beginning to read labels and find what's acceptable, but once you know, it becomes much easier. My daughter is now 11 and in 5th grade, and she will actually read labels for me faster than I can. She has taken ownership of her health. At her Valentines party at school, I watched her give away her "bad" candy - she knows her tics increase if she caves in and eats it. Don't get me wrong, there are times that things slip into her diet, and other times that we give her a "break" and let her have something that is normally forbidden. But I truly believe if body is healthy and strong, it can handle those occasional treats. My daughter's victorious moment was late last year at her follow-up appointment with the neurologist...she is stumped with my daughter's amazing progress, and no longer needs to see her. Good luck with everything and please let me know if I can be of any help! Kristine