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  1. Today
  2. Hi, thank you so much for the reply, I will try motrin as I haven't yet, is it the same as ibuprofen or advil? We don't know the exact trigger for the first flare but I know that I was sick with something like flu or cold in 2018. In 2020, I received a flu shot and my flare arose from that (I woke up with tics just over a week after receiving it). In January 2021, I had a stomach bug (don't know what kind, we didn't think to get it checked out) which triggered the NES and paralysis and other symptoms. I just wasn't sure if I could still get tested or treated for these specific trig
  3. Wow—that sounds intense. So glad that the first exacerbation is settling down. Have you determined a trigger/triggers? Strep? Myco P? Lyme? Mold? There are tests for all of these things. Does Motrin ever help temporarily with symptoms or take the edge off? Antibiotics and steroid tapers both helped my son through flares. Wishing you all the luck in the world with this!
  4. Yesterday
  5. 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
  6. We just got back from the neurological appt specialist that I found in Belgium. He says it is now categorized as chronic tic disorder and will either away or we will meet with him in a year for the TS diagnosis. The whole thing was very disappointing on so many levels. First, I was hoping he would just say (like my pediologist) that this is nothing. Don’t worry. But he didn’t he called it out. Secondly, the meeting was very short…a few questions, then his card and basically a “have a good day.” Very little info…I mean all I know I’ve read on the internet. He was very nonchalant about the
  7. Hi, I'm a 17-year-old from Australia and suspect that all my conditions that I've developed since I was 14 may all be caused by PANS. I have had three sudden-onsets of symptoms, in June 2018, May 2020 and January 2021, all with various psychological and neurological symptoms which have resulted in numerous diagnoses but which have all been treatment-resistant, with medications giving terrible side effects. My first sudden-onset in 2018 is mostly in remission currently, whilst I still deal with all the symptoms from May 2020's and January 2021's. In June 2018, I experienced sudden s
  8. Last week
  9. I think it takes many weeks to get gluten and dairy out of your system. I can’t remember exact length, but I do think it’s longer than 2 weeks. Hope you see some tic reduction soon.
  10. Hello, silver77! We have also been on a mostly GF (had a couple of slips during our vacation). It’s been over a month, and I’m not sure I’ve seen any difference. I am also considering going DF, but that will be a very big challenge. We did see a big drop in tics during our vacation, so I hope you have a chance to just het out there and enjoy some fun and sun and not worry!
  11. Hi, I started a gluten free diet for my 7 year old daughter on July 11th to see if any changes in her tics. I know it's only been 2.5 weeks and there unfortunately were 3 times within this timeframe that she did eat gluten as I wasn't around to stop it (camp, neighbours house etc). I haven't seen any noticeable difference in her tics. I paid extra close attention on the 3 occasions when she did eat gluten to see if there was an increase in tics within that 24-48 hour period and there wasn't. How long did it take for those of you who tried GF to see any differences? I want to try to d
  12. Thanks fir the reply, Chemar. We have a neurological appt. on Monday and much of how we continue will depend on that…but I have considered chiropractic treatment.
  13. 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
  14. Earlier
  15. Also, Chemar…I have been reading all the books and doing all the things. We haven’t cut dairy yet, but may fo there next. Thanks for being a mainstay on this site to offer ongoing hope.
  16. So we have been back from our vacation for a couple of days. During our trip the tics (coughing, neck cracking) were very minimal. If you weren’t aware, you wouldn’t have noticed. I was feeling hopeful. We continued with gluten free food on the road for the most part and sugar free and all the vitamins (fish oil, b, multi, and magnesium, and we traveled with his new dust mite free pillow-his blood test came back with dust mite allergy. He had PLENTY os sunshine and lots and fun and running around outside. However, since we have been back home, the neck cracking has become way more pronou
  17. I’m so sorry I can’t help you with your question. I’m new to this too. Please don’t give up the fight. (I started antidepressants in May, and for me it’s really helping.)
  18. Hi AlwaysWorriedMom, I'm so sorry that you haven't had the responses you need to your questions. I don't know if the reason is that they don't have the specific answers, or that folks are not on the Forum right now. A lot of people have joined Facebook for PANDAS/PANS. Did you ever join a group that you can connect with? I know it feels discouraging to not see responses coming in, but it's not personal! I would give advice but it's outside my area of expertise. I wish I could help. Do you live in Ontario? I'll watch for a response. All the best, Sheila
  19. 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 p
  20. Hello Chemar…thank you for checking in. I was on a horse ranch in Croatia with no internet connection, so I was able to get out of my mind a bit. We ate back in a city, so I find myself googling again. I continue to be in great fear…I was hoping that during this vacation that all of these little tics would go away with all the nature and sunshine, but no. The little cough continues…we are on a 30 day protocol for what the pediatrician says may be hay-fever allergy. He now crack his neck with a slight nod…it’s not very noticeable, but I notice it. He also will sometimes do a neck roll…I t
  21. I’m having a crisis with my son and nobody EVER responds to my posts. I don’t understand this website, and I give up on everything. I give up on life at this point.
  22. 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.
  23. If your neurologist is using that dose successfully for other autoimmune diseases, I’d say it’s worth a try. Good luck! If it doesn’t help, the 2017 JCAP PANS treatment guidelines provide IVIG dosage recommendations in part II “use of immunomodulatory therapies.”
  24. Can anyone advise me what tests my son should do before he gets IVIG? I know it’s crucial to make sure he doesn’t have any hidden infections as that may affect the efficacy of IVIG, and I’m not knowledgeable enough about this to figure out which exact tests need to be done beforehand, and what the results mean.
  25. We still have some tics here and there, but they are getting increasingly difficult to detect even by me. There still moments where tics do increase , but it's relatively a lot easier peak and relative to the first two years peaks duration is significantly shorter.
  26. Hi, Silver77...thanks for the check-in. I actually went to my GP and got on some anti-anxiety medication, so I hope this will help with my obsessive negative thoughts. We also leave for vacation which I was way concerned about as I don't want to spend my whole day staring at my son (he is 6) looking for tics. I constantly go through this battle of overreacting to hoping that the things I'm seeing are benign and transient. He currently has two tics which are not very noticeable: gentle head shake...I actually think he might be doing this because of the sound--either of popping the neck or
  27. How are you doing @Deanit? Any allergy results for your daughter yet? I can relate with the googling. From time to time when I’m really struggling, I have had to promise myself to not google anything on it. I’m on vacation now for the next 2.5 weeks and I’m stressed out about that as I find the weekends I’m at my worse as I don’t have work to occupy me. I spoke to my mom about it the other day and she said something that has really stuck with me - all the things I’m worrying about haven’t even happened and may never happen, just focus on the now. I keep thinking about that everyday.
  28. @merti would love to hear an update on how your daughter is doing. I’m going through this now with my 7 year old daughter.
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