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Everything posted by Emik

  1. You can check dr. Dunc's 'CPRI Brake Shop clinique' at the link below where he has some work shop videos and training materials for CBIT program... http://www.cpri.ca/content/page.aspx?section=162&lpage=26
  2. I just posted in the other post our status as we started elimination diet in July. We first eliminated milk & milk products and then we eliminated gluten and many other according to IGG results. For us is really too early to say or draw any conclusions. As of now her eye roll and hard blink tic did decrease. It was present since last December and was extremely frequent. It lessened now, however some other tics showed up or intensified. Luckily these are not as bothersome as the eye ones. On another note, I really wanted to try CBIT. From what I read and heard about it, to me it sounds really promising. However my daughter refuses at this point of time, she has her own reasons, and I need to be patient until she is ready. I did go through the website below though, over and over, but I never wanted to try ourselves - I really believe is should be a trained professional to guide us through. Finally I had a long talk about it, and I explained what the professionals suggest as a Competing Response for an eye tics (it's there in one of the documents). She tried it for a couple of days, and that also may have contributed to its decrease. I am not sure. Please note I am not sugesting anything as I myself am still inquiring. I am just sharing what we've done so far and for us is really too early to say. I will keep you posted as we go through the diet journey. Good luck to you and your son! http://www.cpri.ca/content/page.aspx?section=162&lpage=26
  3. Thank You so much! Your post is so encouraging! I read it like a couple of times:-) I will keep you posted.
  4. We have eliminated dyes and preservatives, we might miss it occasionally. Sugar is the tough one. It is everywhere - it’s even in the GF homemade bread recipes. So for sugar, we have just decreased it a lot, but still working on its elimination. We have seen some decrease in tics. They are still there, all the time. However I am not sure if they are now less frequent or maybe the most bothersome were replaced with others, less obvious. I truly hope what we are seeing the improvement from the diet and this is not just a coincidence with a waning cycle. One thing worries me a lot! She lost some weight and at one point of time it seemed that she lost her appetite. It really got me scared to the point I was ready to give up. It seems a bit better now. From your experience, Is it ok to give occasionally (for her b-day for example) some Gluten&Dairy treats? Will this set back all the efforts or won’t make a huge difference if is once in a couple of months? Regards, Amy
  5. Thank you very much for replying and sharing the information. I did not know much about Lyme disease, neither knew it may be related with tics symptoms until I found this forum. And is so important to know and watch for its symptoms. I will discuss with my pediatrician, we have an appointment Sep 17th. Thank you and I Wish you best of luck! For us, vocal and motor tics were the rapid onset symptom and very obvious. Soon after we noticed mild OCD, anxiety, and emotional mood swings that correlated with the severity of the tics. Over months and years we also noticed some IBS, recurring low fevers, frequent unexplained rashes, periodic joint pain in hips/feet/arms, periodic fatigue, and periodic numbness in hands and head. Sadly, our first line of doctors (pediatrician x 2, neurologist, allergist) all said tics are common, they usually go away, don't do anything for them. Only after we pursued many other doctors and started treating for PANDAS did we realize it could be Lyme disease. We had labs done and visited two LLMDs who both agreed it was Lyme and Ehrlichia. Prior to treating for Lyme, we also took anti-histamines for rashes. Sometimes it helped and sometimes not. Topical steroids (e.g. Cortaid) always made the rashes go away. We saw a couple of dermatologists about the rashes, and neither could explain the rashes beyond eczema or mild capillaritis and neither suggested a bacterial infection. The biggest problem I see with Lyme disease is the level of disagreement and lack of education in the medical community. Most practitioners who do not specialize in Lyme are relying on guidelines for clinical diagnosis that are now decades old and proven inaccurate in the majority of cases (evidence of tic bite + annular rash = maybe it's Lyme disease). With all due respect to your pediatrician, unless they stay current with Lyme disease research or specialize in tick-borne infectious disease I would disqualify their opinion as well intended but relatively uninformed. Instead, visit an ILADS affiliated LLMD with your medical history and get a clinical exam. If the LLMD thinks it will help, or you want reassurance (as we did), blood tests can be done to look for antibodies to the Borrelia bacteria and other coinfections. Another big problem with Lyme disease is the lack of accurate testing -- there is no definitive test for Lyme disease. There are 36 known species of Borrelia bacteria, with over 300 genetic variants seen across these species. Most tests look for your antibodies to one or more proteins of a single species (burgdorferi) and single variant (B31), and these tests are not perfect and sometimes show false positives or negatives. There are more accurate and expensive PCR tests that look for bacteria DNA itself, rather than your antibodies, but these tests may show false negatives due to a lack of enough bacteria in the blood sample. Basically, a positive or negative on a single test isn't going to tell you definitively if you have Lyme disease or not, and for that reason Lyme disease is diagnosed clinically. In our case, we had Western Blots from Labcorp and Igenex that both indicated Borrelia infection, and additional tests from Igenex that indicated Ehrlichia as a coinfection. These tests supported the clinical diagnosis that we had Lyme disease. Many LLMDs will test using the Igenex Western Blot as it tests for two variants (b31,297) rather than one.
  6. Thanks everyone for the very informative and encouraging posts. msimon3, I wanted to ask if there were any other signs that eventually led your son's doctor to investigate on the Lyme or was just the tics. I am asking because my daughter had red bumps on her body the summer before the onset while we were on vacation. We saw a pediatrician there who prescribed an anti-allergy medication and the bumps faded away in a day or two. However after, she got fever for a few days and her asthma was on/off (not quite under control) for at least the next two months. So I am not sure if this warrants for more research on the Lyme side. At this time, my daughter's pediatrician dismisses any possibility that her tics may be infection/inflammation related and she only did a throat culture test for strep - it was negative. Are there any specific test done for Lyme?
  7. Thanks so much for replying! I read somewhere that some people saw improvements within the first week of the diet, so I was a bit discouraged. It is comforting to know that it takes time and is a gradual process. We will definitely inquire on the gut health and other possible issues and read on Sheila’s book. Jetocurly4, I am so sorry to jump into your post, we just started the diet so your post came in the right time:)
  8. Thanks Cara. It's very possible, especially with the gluten and the eggs that we excluded from her diet just a few weeks ago. I'll watch carefully. Thanks very much for posting, I am glad you see improvement and it gives me hope. It's definitely not an easy journey.
  9. My2sons, how long until you saw the improvement? Was it within the first couple of weeks? We started Dairy free diet back in July and then latter (as of Aug 14th) also excluded Gluten and Eggs. This was done based on the IGg results for food intolerance. However, we still haven't seen any improvement. We have also eliminated the food additives/colors/flavors for a long time now. My daughter's tics started the day she turned 9. The first two years they would appear only for a couple of months and then she would be virtually tic free for the rest of the year. However, this past year they have been almost constant - no relief. Her tics include eye blinking, eye roll, shoulder twitch, finger movements. She will be 12 in September, and starting high school this year. I read a lot about CBIT and was really hopeful on that, but at this time she is not open to this idea. I need to be patient and let her be ready. I am not sure what else to try - nothing seems to work. Her tics seem uncontrollable for almost an year now. She is on a good multi, and also takes the mag/cal/zinc combo, algae and m.s.n according to her homeopath that we saw this summer. I appreciate any comments or suggestions. Best regards, Amy
  10. Hello, thanks for sharing your positive experience. Could you please let me know which brand for the GABA chewable supplement are you using? I would keep this info for future reference. Thanks, Amy
  11. Hi Lisa, Thank you so much for your response. I am so happy to hear that CBIT is helping your daughter. We live in Montreal, Canada. I called Montreal's TS Clinic to inquire on CBIT, but according to my brief telephone conversation I didn't get a feeling that CBIT is being offered. They mentioned medications, relaxation techniques and "Habit Reversal". I am anxious to inquire more on my next appointment with my daughter's Pediatrician, March 11. Warmest Regards, Amy
  12. Thanks, I'll keep you posted! She goes every week for about 12 weeks and then every other week etc. So hopefully we'll know something soon. Hi Lisa, I was doing some research on CBIT and came across your post. I would really appreciate your feedback on this technique. My dd is 11 and she is suffering from tics since the age of 9. I just purchased the book "Nix the tics" (haven't received it yet), but would be hesitant to try anything on my own without professional guidance, so I was looking into CBIT as a possible option to inquire. Regards, Amy
  13. My daughter's tics wax and wane similarly. Since the onset in 2010, at age 9, they usually show up in Nov, will transform from one type to another in the next couple of months and then for a couple of months it gets really quiet. Now she is in her waxing period and I am not sure if this waxing cycle will end in a similar manner. We try to eat healthy and avoid all the bad stuff, although we are not super disciplined. I would really like to do the blood tests for both, PANDAS and possible food intolerance/allergies, however I can’t get our Ped. onboard with us. Her main strategy is to IGNORE and WAIT and is absolutely against any further analyses. She only agreed for a throat strep test which came back negative. We leave in Canada and I am really having a hard time to find a doctor with more integrative approach.
  14. Michael, Thank you for the heads up. I am reading to understand more. For some of these disorders/diseases, I really did not know much in the past. My dd is a bit better with the eye/facial tick, it decreased since we introduced the diet and reduced TV/PC games. However all other ticks (and some new) are still there. Wishing you all best wishes for 2011. Best Regrads Amy
  15. Michael, Thank you so much for your reply and for the info. My daughter had fever in mid Aug, and it seems that all went downhill since then, or is just a coincidence. Our pediatrician took a strep test but just from her throat - it came back negative. We asked for a blood test, haven't done it yet though. At the time our dr. thought is not necessary. We will ask for these tests as soon as the dr's. office is re-opened on Monday. Thanks so much for the info. Amy
  16. Thanks so much for your reply. We started the 'no diary' diet and no artificial colour/sugar a couple of days ago. Both, my husband and I noticed decrease in the facial/eye and arms tics, we were so happy and I could not believe my eyes. However, today she complained that ‘something’ makes a constant discomfort below her shoulders and she constantly feel the urge to straighten her back. So, now I notice her other movements and I wonder if this is another tic. We will definitely continue with the diet and see how the situation develops. I will post an update. Thanks & Best Regrads, Amy
  17. Hello Chris, Thank you so very much for your reply. With exceptions of the last couple of days (being out of town), I am now a very frequent visitor to this forum. I find it has a very helpfull info and ideas, and most importantly I see we are not alone... We constantly go back in time, and remember she had fever mid Aug. It lasted a day or two. Her doctor, took a sample for a strep test, which came back negative, however I wander if a blood test would be also helpfull, to eliminate any possibility. Today, my husband and I agreed to try a 'no diary' diet;. We feel this is something we can try ourselves for 2-3 weeks. After the holidays, we would definitelly like to see a nutritionist or other professional to guide us for a diet suitable and developed for my dd. I have also ordered two Natural Calm products, the multi vitamins and the Mg/Zinc/Ca combo which says is the EU version. We should receive it by next week. I do wander, however if this is something we can start on our own or we should consult our PED. So confused and so scared at this time, I just do not want to make a wrong move and make things even worse. Wishing you all a very Happy Holidays. Thanks & Best Regards, Amy
  18. Hello All, My Daughter turned 9 in september 2010. Just around her birdthday, she complained on a tingeling sensation in the shoulder area that would make her shoulder twitch. We did not pay any attention to this as we thought is something minor and probably will go away. Latter - mid November, she developed heavy eye blinking and arm twitch. We saw our pediatrition and she recomended that we IGNORE. She did send her to EEG though. The same day (as the EEG), my dd complained that the EEG test was very hard and her legs were hurting because she needed to keep them tight all the time. Coincidently she mentioned yesterday that she can hardly sit still in the classroom, she constantly feels a tightness in her legs and constantly feels the urge to kick her legs off the chair. I do not understand! Last Sutarday, she was soooo good, hardly blinking and not frequent arm movements. The very next day, Sunday, all came back in full speed, plus the leg kicking in the clasroom. I feel soooo helpless, and do not know where to start, what to do. As per our pediatrition, we do not need to see neurologist, not yet. She feels that this may go away, although she is not aware of the latest developments (leg kicking). Is there a hope? Can this really go away? My dd clearly shows signs that something is happening with her body, totaly out of her controll. I do not think we have TS in our family. I would be very interesed to lear if there are some books or examples of how we can practice Habit Reversal and/or some other techniques that may help. She was under FLOVENT from Sep to Mid November, then we took her off thinking Flovent might have caused the tics. She is almost 3-4 weeks off FLOVENT and we do not see any improvement - so FLOVENT was obvioulsly not the trigger. Is there any hope on this journey or is just going to get worse??? Thanks sooo much to all in advance! Thanks & Best Wishes Amy
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