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  1. I know exactly how you are feeling. I wanted so bad to give my son a neck massage and wishing it all away...well that certainly did not work! My husband and I went to pediatricians, several Neurologists, Neuro-psychologists, etc with no real help. If you are open to meds that is all the Neuros are going to offer you. I started my son out on meds (my son was 5 when he was diagnosed - he is now 7).He was on Topamax, Clonidine, Risperidone, Focalin, Guanfacine, Intuniv with no real results. So in doing more research - reading alot of these posts I started to think of other avenues - not anything traditionally I would have considered. So I found a Holistic pediatrician. This pediatrician is the FIRST doctor that actually ran tests on my son. She did blood, urine and stool testing and found out that he has a gluten intolerance and sensitive to alot of other foods we were not aware of (even though we had also seen an allergist). She also assessed that he is Vitamin D deficient and his cholesterol is terrible - great. Anyway, we started out slowly on the gluten free lifestyle - because it can be very overwhelming - I have seen a very significant change in his tics - they are truly few and far between. I do see an increase in his OCD symtoms but I am so happy that his tics have subsided. this has been since about November 2010. I would give a Holistic pediatrician a try - at least see if they will do testing to assess any sensitivities/intolerances - then start from there - especially if you aren't really excited about the idea of medication. The neurologists arent really on board with the idea of what you put in your body (nutrition-wise) has an affect on Tourette's. Good luck to you and your family and my prayers are with you.
  2. Well, I will be able to let you know in a few weeks....our Holistic Pediatrician conducted a battery of tests (stool, blood and urine)--IGE testing....and it came back he has intestinal inflammation - she mentioned a leaky gut as well...I am so blown out of the water at the test results...my son seems to be in "bad" health - has allergies and sensitivites to things that I would not have guessed - things I have been feeding him thinking they were healthy for him. So she suggested a total diet overhaul - which means - NO GLUTEN...after reading about the gluten free lifestyle. I am very intimitated - gluten is in a whole buncha stuff!!! I dont even know where to start in cleaning out my pantry, buying gluten free staples etc and preparing gluten free meals - which means you have to essentially cook from scratch - and the worst part....I am such a bad cook! - ugh....
  3. We avoid 3D movies because something about the glasses you have to wear triggers my son's head shaking....same with a hat, hood, bike helmet. He shakes with anything comes in contact with his head. Overall, movies make him more active - cant sit still, moving around etc. We still go because he does not complain about the tics bothering him and he really likes to go to the movies - we just avoid the 3D versions.
  4. I watched this show and I had a feeling they were going to showcase the worst cases - it would have been nice to see a milder form of TS as well. I taped it thinking I would re-watch it if there were any good information on treatment....well needless to say I deleted it and I have seen it rebroadcast and I skip past it not wanting to see the show at all. I purchased a movie my mother saw by Hallmark called "Head of the class" about a man who struggled with TS and ended up becoming a teacher - I have not been able to talk myself in to watching it just yet. I get so emotional about the future of my son and his condition. One day I might get around to watching it...My mom cried through most of it but in the end she said it was inspirational just to see how he was able to perservere in the face of ignorance. Did anyone see Head of the Class?
  5. I have been shopping at my local supermarket for foods that are organic etc, I find somethings that look/taste good but I have a hard time with organic meat so I am going to start going to either Whole Foods or Trader Joes - both are about a 30-35 minute distance from me (as opposed to Meijer, Kroger, Walmart which is about a 2-5 minute ride - so easy just to stop there!) But I want to get the best selection of products as well as a decent price - which I know I will be paying substantially more shopping at either of these food stores (I have even heard of Whole foods referred to as Whole Paycheck!) So I am looking for input from those that shop at these stores - which one has the best selection and price.
  6. I am one that does not deal with my son's tics well either...in addition to having his tics he is also VERY CLINGY so he wants to sit right next to you, be in the same room with you at all times. So when he gets home from school he wants to be with me all the time. I try to act unfazed so that to him it seems like - it does not matter to me - I want him to feel like at home, he can be himself. sometimes tho, it is nerve wracking. The motor tics bother him more - the vocal tics bother me more - he has flip flopped so now his motor tics are more prevalent - those bother him physically the most - he comments that he hates his life because he can't stop moving his neck and head - and after all day of that he is in pain -he gets frustrated and the tears and the crying starts.. I feel so helpless. The only time he gets any peace is when he is sleeping. So I am so happy at bedtime he is at rest. I feel so frustrated because I dont know where to go next.. but we cant stop - we have to keep researching, finding doctors, trying new strategies. As one post said...I think of the kids that have a terminal illness - one in which no matter what you do you will still lose your child. Things could always be worse - My son will grow up with tics - but he will grow up. We all have to be thankful for that. Bountiful prayers to all of you
  7. OMG this journey is so enlightening! My son (6) was diagnosed with TS in 2009 and we have been struggling ever since. We have been to numerous Ped Neurologists, allergist, psychologist, neuropsychologist to no avail. He has been on several different medications to which none of them have worked. They only had negative effects on him - weight gain, staring into space etc. We finally found a holistic Pediatrician who ordered several different tests (stool, blood and urine) - and I might add NONE of the neurologists ordered one single test to see if it has anything to do with allergies/food sensitivities etc...all said that one thing had nothing to do with the other. We are waiting for the test results from the Hol ped to come back - we have an appt on the 16th to discuss results. I am HOPING beyond hope that food/additives/sensitivities etc is the answer. My son is so very tired of his tics and comments that he hates his life - breaks a mother's heart to hear that. and to know there is nothing I can do IMMEDIATELY to make them go away. He is a trooper tho. I started my own (as amateurish as it is) detox diet..NOTHING like yours tho. I am hoping to get guidance from the holistic ped as to what he needs to stay away from. She did some sort of IgG testing (I think that is what it is called). I am crossing my fingers for any information. I just want to say that I think you are doing such as awesome job at helping your son. I must say he is such a strong person with all the dietary changes and restrictions he has. I am going to keep reading....keep updating us!
  8. I am not sure if this will help anyone but here is a helpful website of a Doctor who feels that treating Candida will alleviate tics. He references books he has authored as well as gives good explanations and discriptions of treatments. I have not been to this doctor; however, when I contacted another doctor that specialized in EEG Biofeedback - she suggested that I check into systemic candida and through conversations with her, she sent me this link. He is located in Wisconsin if anyone lives near. http://www.nutritioninstitute.com/bruce_semon_md.html
  9. Congratulations on your son being tic free! I am just starting this journey and hope I can one day post the same type of comment. I looked at your website and saw all of the book references - is there any one book you would recommend to clean up my son's diet? and give ideas of what he SHOULD be eating? What type of dr did the allergy testing to uncover the wheat and egg allergy? I went to an allergist and they did the tests, i feel, just to appease me. Commenting that there is no tie to allergy and tourette's.....did you go to a specialized physician? your pediatrician? My son is also on topamax,Risperdal and Strattera with no relief. I am now looking into other avenues (tic tamer, EEG Biofeedback, changing his diet - going organic and gluten free) but I am so overwhelmed. I am picking up Natural treatments for tics today and I might pick up 150 healthiest foods on earth from your website listing. Thank you and again congratulations and good luck! Your website looks great by the way!
  10. I am so worried about giving him a flu shot. I am opting out. He has never had one in his life and after all we are going through I am not going to try the flu shot now. good luck!
  11. OMG! I thought I was THE ONLY ONE who thought like this! I never wanted to say it out loud because then I would be admitting to being a terrible mother. I have been a SAHM since he was 6 months old - lived overseas with my husband and no family or friends for 4 1/2 years, had a 2nd baby and was at my wits end. I am also a screamer when I get fed up and I FOR SURE thought I caused something to switch in his head and have Tourette's. I am so glad that I am not the only one who has these feelings.
  12. It was the end of summer and he had bumps and they would turn into a "open sore-like" spot if he itched it open. I was putting cortizone on it because it was itchy but it was getting worse it was in the "crack" area and along the inside of the butt cheeks but not in the anal area - if that is descriptive enough - I did not want to get to graphic. So his pediatrician said that he sees it alot in the summer where the kids are playing and sweating and not being dried off well enough - so he gave me the antibiotic for the infection and a topical cream for the itching. it went away after a few days and that was it.
  13. Does it have to be specifically a Strep Infection? My son has had minor tics but most recently he has had greatly increased tics....and I had forgotten about a slight skin infection he had on his backside and they doctor did prescribe amoxicillin. Soon after (not right away) his vocal tics went nutty and I googled Pandas from your suggestion and it fits him to a tee! Even though Pandas might be a cause - still there is no magic solution to fix this. I just have to be aware that if another infection develops I have to be prepared for hightened tics correct?
  14. Hi Faith, At this point I am keeping him on the meds until I have a firm plan in place only because, like you said it might be holding the motor tics under control and if I take him off it might be 1000 times worse. So right now until I know my next step I am going to keep him on the meds. He was on clonidine before as well and it made him very sleepy. He is on risperdone now and that increased his appetite and he is 6 and is a SOLID 84 pounds. That concerns me too so I am working hard to find an alternative to medication at this point. The kids at school have been fairly patient with him. Some have noticed and asked why are you making that noise and some have shushed him during class because they can't hear the teacher. But the teacher took all the kids on the mat in the class and she explained that everyone is different and she explained his condition and explained they needed to have compassion and understand of those that are unique. So I am glad she did that. I made it perfectly clear to her that I was not going to accept any form of bullying or anything like that so I wanted her to know that I am VERY hands on with my son and his day at school and if there are any concerns she needs to contact me right away. so she is doing pretty well. got an email from her this morning saying his tics are not as prevalent today - that is music to my ears - we might be turning the corner on his peak period!
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