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Chemar

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Everything posted by Chemar

  1. Raffi yes, your posts are in English. From what you have said it really does sound like your son may be dealing with PANDAS? We have a specific forum for that, and although it is quieter there now, there is a wealth of information already posted there. https://latitudes.org/forums/forum/17-pans-pandas-lyme-included/ Here is more info as well on ACN's main website https://latitudes.org/category/conditions/pandas-pans/
  2. Welcome to the forum Raffi. Please tell us a bit more and ask any questions you may have. I or others who follow here can try to give info from our experience.
  3. Hi vg1119 If you do a search on this forum for Zoloft you will find quite a few threads and posts that discuss it related to Pans/Pandas I know SSRIs seem to work well for some people, but our experience for my son (who was not dx Pandas but had Tourette tics and severe OCD so may have fallen into PANS category?) was not good - he was rx Luvox and it actually seemed to exacerbate the OCD and phobias while making his usually bright personality rather zombied. But as I mentioned, I have seen some parents very thankful for improvements, so do use the search to get that info - pro and con
  4. Hi ThreeAngels, I just wanted to welcome you to the forum. I am not clued up on PANDAS beyond the basics, so hopefully someone with more knowledge will be along soon. However what you describe of your strep history, would make me definitely look more into a possible PANS connection to your tics, anxiety etc. Hope you find answers and effective treatment.
  5. Hi Deanit Just 3 quick points ---- PANDAS/PANS can cause tics without "personality changes" and If there is a skeletal imbalance, that can cause the neck cracking tic - not just "diet or anxiety" - that is why I mentioned the chiropractic evaluation and possible NUCCA treatment. With the many things that can cause tics - the clearcut line in dx TS from other tics is a lot more blurred.
  6. Deanit, I don't think it beneficial to be "searching" for more tics? The old criteria for a dx of TS really are rather arbitrary, and with so many other reasons now known for why kids develop tics, it would be a lot more beneficial to focus on identifying potential tic triggers when a tic emerges, and implementing things that help alleviate. On your previous thread I mentioned a number of things that we found helpful when my son had a neck tic (NUCCA, epsom salts soaked warm cloth on neck or magnesium lotion applied etc) Not sure if you have tried any of those, but our experience did show help.
  7. This article by Andrea Frazier is from 2018, but this valuable parent perspective is still so very relevant! Your Kid Has Tourette’s? 5 Ways to Feel Less Overwhelmed (It Works!)
  8. So sorry your appointment was not more helpful Deanit. To be honest, most people who have passed through ACN Latitudes forums have had similar experience with Neurologists - sad but true - and another reason many switch to more holistic medical practitioners who can guide them with natural treatments for tics. If you are able to get any magnesium cream, oil or lotion (or Epsom) try rubbing that into your son's neck. Even a warm solution of Epsom Salts applied via a facecloth can often help. We found it most beneficial. Also do look into the NUCCA chiropractor - we avoided anyone who was not NUCCA certified as their methods are very gentle and different.
  9. Deanit - some people who have tics might cause their skeletal areas to go "out" - this happened a fair bit with my son, and was concentrated around the neck area. He would then have more jerking tics there to try to alleviate it. It sounds similar to the neck cracking you describe? We found tremendous benefit from having him treated by a NUCCA chiropractor - I don't know if you have them in your country http://www.nucca.org
  10. Hi Deanit Good to hear you were able to relax some without Internet and in Nature. I do want to reassure you, our situation is not an exception! In the 2 decades I have been around Latitudes/ACN, I have encountered far more situation where things improve than get worse, and many people whose tics resolve or who go on to have fruitful lives despite tics do just get on with life, rather than document their success/relief etc etc. I stay here as this site was so instrumental in helping me through the worst times all those years ago, and so to me it is paying forward. Please please don't lose hope, and rather seek ways to improve things rather than reading those "worse case scenarios" Have you read any of Sheila's books? There is a wealth of helpful info and resources in them, and they are also available on Amazon. I am not just trying to promote her books - they really have helped so many people and she has dedicated so much to keeping ACN/Latitudes going in order to provide that hope and help! Tourette Syndrome: Stop Your Tics by Learning What Triggers Them Natural Treatments for Tics & Tourette Syndrome
  11. Hi Deanit Just checking in to see how things are going with your son? I do hope you are all managing to have a truly happy vacation.
  12. Hi Deanit I do understand how you feel but your wife also has a point - you are not helping, and especially not helping your son, by obsessing over these tics. This may sound tough, but when my son first began manifesting tics and I was freaked out, one of my wise friends told me to consider visiting a hospital ward for terminally ill children to get things into perspective. I didn't - but it was the reality check I needed. Tics, Tourette etc are not terminal, as distressing as they may be. The more you focus on them, the harder you make it for your child! (as well as for your wife and yourself) Of course you want to help your child and yes, doing your online research is part of that. But the purpose is to gather helpful info - not find "worse case scenarios" Even if this were to be TS - why do you feel that is so severely distressing? People with TS frequently are highly talented and live very full lives, despite their tics....and many also seem to have tics diminish or stop completely as they pass the "hormonal" years. You are losing precious time to just appreciate your son for who he is, whether or not he tics. Focus on the things you can help with without obsessing over the things you can't control. The information here, and on the main website, on tic triggers and other things can really be helpful - but again, just do things with a balanced outlook and a step at a time. In the long run, that will help all of you most. Again - I DO understand your distress - but this advice comes from over 20 years of walking this journey with my son and I urge you to take a deep breath and focus on the wellbeing of your family as a whole.
  13. Hi Dean, I just wanted to welcome you - I am at work so can't post more now. Do be sure to take a look at the pinned threads here that have good resources/info and also the main section that has a wealth of info https://latitudes.org/conditions/what-is-tourette-syndrome/
  14. Good to see the CDC take on bullying- and in this article specifically related to TS Tourette Syndrome: Help Stop Bullying
  15. @kmilligan06 Does she only tic more in the 03 Explorer - or in other vehicles as well? If there is mold in the Ford that may well be a trigger - or some other substance in it. That is if that is the only vehicle triggering her increased tics? Also, are the increased tics only when she is a passenger in the car, or does it also happen when she is driving?
  16. We have had numerous reports here of children ticcing more in *new cars* - but the post indicated this is a 2003 Ford Explorer?
  17. Hi kmilligan06 My son used to tic more in the car! I have heard many theories on why, but never was able to settle on anything finite, other than that for him it may have been a time of tic release? ie driving home after school, or on the way to something where he felt he wanted to suppress tics when there. One positive thing is that, where I was originally concerned this would mean he ticced more once he started driving, amazingly this has not been the case. He has been driving since of age and is now in his early 30s
  18. Hi danielled, I can't write much now as on way to work, but did want to welcome you, and also encourage you that there is hope! My son dealt with severe OCD, Tourette Syndrome and ADD (no Hyperactivity) as a child. We were taught about the condition of Tourettic OCD/tics, where OCD behaviors and tics morph - and that understanding helped so much - my son benefited greatly from CBT (cognitive behavioral therapy) to help him with this melded OCD/tic situation. He is now in his 30s and honestly TS/OCD are a very minor factor in his life - whereas they used to predominate. Prescription meds (especially the antipsychotics eg.Luvox and then Zyprexa) actually made things much much worse for him, and it wasn't till we began a more holistic approach and followed a lot of the excellent natural treatments suggested here that he turned a corner. learning what triggers tics for him was also a vital piece of the puzzle. I'll be back later and hope you will have had other input. I do have a lengthy thread discussing the many things we did to help my son - it may give you some pointers. Here's the link: The Treatments That Have Helped My Son
  19. Hello dutragirl Sorry to hear of the development of tics for your granddaughter, but take heart, very often tics are transient in young children - or you may find another trigger that is causing them. Before I make any further other comments or suggestions - I see you posted on our PANS/PANDAS forum rather than the TS/Tics forum, so I am wondering if you suspect an infection connection to the tics?
  20. Hi Did they make any suggestion on why her RBC & WBC counts are down? Any treatment suggestions? The fact that they are below normal may be indicative of an underlying issue that in turn may be triggering tics. An ASO <20 would indicate no strep infection as far as I know. https://www.healthline.com/health/antistreptolysin-o-titer
  21. Hi Tropea Interestingly, where they benefit greatly from Omega-3 EFA - some kids with tics, specifically TS tics, seem not to tolerate fish oil well - but do better with Omega-3s from other sources eg flaxseed oil etc I know we once had a thread running where there were links explaining why the fish oil may exacerbate some kids' tics - but not too sure where that info is now. I will see if I can locate it.
  22. You are welcome Deb. Yes, it is a continuous learning curve to find the tic triggers and best ways to keep things stable - but oh so worth it!
  23. Thanks so much for updating so thoroughly Deb. Hoping for continued healing for your child. I wanted to mention that we uncovered chlorine to be a major tic trigger for my son when we realized how much his tics ramped up after swimming (outdoor pool) - that, in addition to the mold, may also be what exacerbates your child's tics in the indoor swim/dive pools.
  24. Hi WorriedMum I am not sure if you have already posted this on another thread, but has your daughter been evaluated for PANS/PANDAS? From what you wrote above, this is something that PANS/PANDAS kids may experience. Where Tics/TS can certainly manifest with some very obsessive or even phobic behaviours - still in general tics don't usually have an almost hallucinatory manifestation like you describe, and most people with TS/tics don't generally exhibit violence or aggression when tics are in flare - although yes, sometimes the tics can be self injurious.
  25. Welcome to the Forum LLYNCH though sorry to see what brings you here. I do want to encourage you not to lose hope! My son's TS tics were very severe when he was 10yo but we found, after going down a number of conventional medication rabbit holes, that there were ways to help him greatly through a more natural approach of nutritional and environmental remedies that reduced the things that were triggering his tics. Do take a look at our pinned threads as there is a lot of helpful info there, especially in the excellent resources of Sheila's 2 books on Natural Treatments and identifying tic triggers, as well as in the Useful info thread. It is very possible that something related to your son's injury and subsequent treatment may have been a catalyst in the onset of tics. Our bodies are such intricate systems that when something goes awry in one area, it can impact others! I hope you find answers, and that things will soon improve for your son.
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