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I have been part of the tourette's internet chat community since my daughter was 5 years old. Over the years I have read posts that expressed my same feels, thoughts, and experiences with tourette's. Unfotunately, my daughter's condition is on the severe end of the tourette's spectrum scale (48 out of 50 on the Yale Severity Tic scale). We have experienced things that I would hope no other child with this condition would ever have to bear. This last year my daughter was pulled from school and we were on the road to getting her DBS surgery (deep brain stimulation). We were set for surgery in April/11 but the neurosurgeon postponed the surgery in March until we completed cognitive behavior therapy and try the medication tetrabenazine (we had tried all the other tic meds with minimal success as well as alternative treatments). At the time of cancellation my daughter developed a very physical strong tic that fractured her hip (the ischial, which is that part of the hip which is the bone that is in the middle of your butt cheek). Since this was a tic, she could not stop doing it and as a result she was in chronic pain. To make a long story short, she was in pain for 5 months, hospitalized 5 times with a total of over 30 days in a hospital, and confined to a wheelchair for a month,and was given over 20 kinds of pain meds/muscle relaxers. What finally gave her relief was botox injections in her hamstring-this was something I had asked 4 doctors to do and everyone of them turned me down. Thank god for the pain management dr. that agreed with my request. She gave my daughter relief and allowed us to start accomplishing the last 2 items on our DBS checklist. My hope in telling our story is twofold. One, to bring awareness for those with severe tourette's that DBS is an option and can be a successful one at that. Two, my daughter has a facebook page dedicated to bringing awareness, attention and generally, showing support for her as we seek this treatment. If you type in "hope for sam" on facebook, her page comes up. It would be great if you visit to "like" her page and spread the word. To those of you who want to know more details about DBS and our story you can also go to caringbridge.org and type in Samantha Frank and read about our journey over the last year. I have become a "reluctant" expert in the area of DBS for tourette's, speaking to several families of children who have had the surgery as well as several adults. Also in my quest I have also spoken to several of the leading neurosurgeons in the country (there are very few)who have done this surgery with confidence. I have also witnessed and experienced the "politics" of this treatment among TS medical "experts" and found it shocking that I had to navigate cautiously through their biases. While DBS is not a cure,it can give those who's lives have been robbed by a condition that is relentless, a better life. Thank you for your attention and support for the families and those who suffer with tourette's.

Just another perspective on the show....If there is one thing I have learned over the years about this condition is that the severity of TS varies greatly with each person, as does what works for one may not work for others. Unfortunatly, for my 13yr old daughter, her tics are very severe and we have tried conventional, unconventional, supplements, diet, even dr. Stack's mouth appliance...all this with little or no lasting effects. When I watched the program, it lit a fire under me to just not accept that my daughter's future will be one of limited education, no job, and a lack of social interaction. The arguement of " she may grow out of it when she's in her late teens" is just not acceptable, when there is something that quite possibly can help her. I just can't get the years of lost education back for her. Our next step is DBS. I have not entered that decision lightly, but for us, in order for her to have a chance at a better quality of life, there is no other alternative. Since making that decision, I have made contact with the mom of Jonah in that program, and she told me it was a decision that has changed her son's life and the family..completely. My daughter and I have a consultation with neurosurgeons Dr. Starr and Dr. Lawrson at UCSF in Janaury. My hope is that they will do the surgery. If not, my next step will be to go to WI and meet with Dr. Shillay. I believe that we are all moms who have our kids best interests at heart and mine is to be the best advocate I can for my daughter.

She takes 4 1200mg phosphatidyl choline complex, 1 600mg butyrate, 2 300mg St. John's worth, Glutathione in a cream form and 4 50mg 5-htp. This along with a low sugar, minimal gluten, dairy free diet. Remember this works for her and the same combination may not bring the same results for your child. That is why the testing that the DAN doctor does is so important. Please don't try and duplicate what she had because the level of 5 htp my daughter takes is very high, but because her serotonin levels are so low, the doctor has ok'd for her to this amount. If you have any other questions, don't hesitate to ask.

It's been a very long time since I've posted, but your situation was very similiar to ours. Brief background; my daughter now 10, was on 2.5mg of abilify for 1 year. She was also taking Strattera as well for a bout 2 1/2 years. I too, at the beginning thought the abilify was working so well, until, 9months later during spring, she had her usual terrible breakout of her tics. They were so bad that she was self torturing herself and couldn't stop. This was why we initial took the abilify and thought it had stopped it. It appeared that for some reason, this bout seemed to be seasonal. Every spring for the past 4 years this has happend. Before taking the abilify I researched holistic approaches but with mixed results, so it was just the next step to try meds. After this last springs' bout, I chose to chuck the meds and see a DAN doctor-we had nothing to lose. He saw her at her worst. My insurance covered 60/40, so at least I had some coverage. On our first visit, he recommended that we try a gluten free, dairy free, sugar free diet, until the test results came back and showed what foods she had a high reaction for. One month later, the tests showed she had reactions to milk, eggs; white and yellow parts, yogurt, sesame seeds. Did I see a change during the first month? Yes, but I could not honestly say it was because of the diet, since her spring attacks last for about a month or so, and I told the doctor that. After the second visit, and taking the additional supplements he recommended, I noticed a difference in what I call her normal tic stage. This to me was HUGE! Its been 5 months now and her tics are still less severe than her average. The DAN doctor made such a difference than me doing it on my own because of the testing and knowing what she was deficient in. This in the long run saved not only money but TIME! He also made himself available via the phone for questions or changes in dosage/supplements. She is on 4 different supplements that have really changed her life. How will she do this spring? Your guess is as good as mine, but if her normal tics are any indication, I think we will be better off this time around.......god help us if I'm wrong. My advice is to do what ever you have to, and go to the DAN doctor as soon as you can. Remember results will not happen over night but at least you will have started the ball rolling.

My 7yr daughter was on a combination of strattera and chlonidine. (plus fish oil, ginko, b complex, mag, etc.) It made life manageable, both with her tics and her ADD. Through much thought and regret, we took her off of the strattera due to the new info relating it to severe liver damage. Since then (2 weeks ago) the can of worms have been opened. Her mood and attention have just gone to pot. It already is affecting her work in school. When she was on the clonidine her work was very detailed and I didn't have issues with her doing her homework. Now, its like pulling teeth to get her to finish one page. And with that comes, the arguing, which brings on the tics. etc... In fact, now the chlonidine makes her sleepy were as when she was taking it with the strattera it did not. I'm feeling very lost. I have a stomach ache every morning not knowing what kind of kid I'm waking up each day. Sorry for rambling..... I have tried all the supplements (with diet) on my own with minimal results. I would like to hear from anyone who has used Bonnie's Bontech products. I don't want to go back to medication if I can help it. thanks for listening.

I'm curious to know if anyone has had, or knows of someone, who has used accupunture to treat Tourettes/tics. My daughter is 6yrs and is in the process of being diagnosed with Tourettes. Currently we are trying to treat it through diet and supplements, however, we haven't seen a change as of yet.