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Sheila

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Sheila last won the day on May 28 2019

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  1. 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
  2. Hi ab1988.Welcome to the forums. It's encouraging to read in your post that the facial tics have diminished, though it's hard for you to know why. You said you've read a lot on the forums. I'm not sure if you have seen the website articles also. Have you tried any other interventions yet? It an take a multi-faceted approach to subdue tics. Here's an example of what one parent did, It represents a number of different concept that parents have used. Not everyone does all of them, of course. https://latitudes.org/dealing-with-tourettes-or-tics-i-wrote-this-just-for-you/ It's inte
  3. Those are really good insights, MLee. If you have time, please let us know how your doctor has you addressing the gut issues.
  4. FraggleRed, it's wonderful you had good results after your significant efforts. It's so great the nightmares, joint pains and stomach pains are gone also! It does take perseverance, as you say. Thank you for sharing your encouraging message. Kuma --I'm glad you have a referral to an allergy clinic. (And don't forget to check for milk, after the milkshake reaction --if that was indeed the actual trigger at the time and not just a coincidence). It can be so helpful to have some professional help in sorting things out. And remember that if needed, approaches can go beyond diet. I hope you'll
  5. Hi Kuma, welcome to the forums. I'm glad you wrote. I know it's really hard to watch your child go through so much. 🙁 It seems you've seen some connections with foods at times, and have tried different adjustments. Could you please let us know what diet he is currently following? Also, do you have a family history of allergies? Or of sensitivity to chemicals, like perfumes or gasoline smells--more than typical? I'll look forward to hearing back from you.
  6. Hi Emmars26, welcome to the forums. I'm glad you seem to have zeroed in on likely some key underlying causes of your daughter's difficult symptoms. I hope you can let us know what testing shows. I was not familiar with DNRS for neural retraining https://retrainingthebrain.com/ The testimonials are impressive and it would be good to learn more. I did a search on our forums and didn't see specific reference to it. It would be interesting to know what your doctor's experience has been with patients referred for DNRS. We are glad you wrote, and wish you and your family all the best
  7. Nursemom21, its definitely good that you are seeing a PANDAS neuropsychiatrist for these types of symptoms. Please let us know what you find out. I know everyone will be interested to know. It's too bad you had to wait so long, but hopefully new answers will be coming. Sheila
  8. Hi NurseMom21 I hear your major concerns about your daughter and realize it must be very hard to deal with. You have my sympathies. Meanwhile, I would not focus on the 12 months for TS, or various tic criteria in general. Even researchers admit that the delineation between different categories of tics is pretty arbitrary, and there is ongoing discussion to change that approach. I saw your recent post that said you are seeing a PANDAS neuropsychiatrist this coming week. That should be very helpful. As I mentioned on that thread, please do let us know what you learn. All the best,
  9. Hi OutoftheFryingPan -- First, my sympathies for the major symptoms you have been dealing with. But also a big pat on the back for your dedicated efforts that have revealed some key food reactions in your son. As you say, it's not easy to track details but it can be very valuable. (Loved the comment on neat handwriting!) It's also great that your son admitted to the toffee and gummy bears! Otherwise, the mystery can make us moms and dads so disheartened and worried. I used to feel sick to my stomach when I couldn't figure out what was going on, and so relieved when the answer was revealed
  10. Hi Ourofthefryingpan--Welcome to the forums. I'm sorry to read about the very difficult time you are having with your son. I can only imagine how distressing this major increase in tic severity has been. Is your current doctor going to consider PANS soon? That is something that is best caught as soon as possible, if it is the case. Has your son had an infection of any kind that you are aware of? In addition to whatever underlying imbalances may be occurring that the doctor could uncover, it might be useful to think through what else might be going on. Please drop me a note through o
  11. Hi to NurseMom21, I'm so sorry to read all that you and your family are going through. Yes, others have experienced rapid development of tics, and there can be different causes. What you have described does not sound like a typical transient tic. When major tics (and/or behavioral or emotional change) start up quickly, it it can often be due to an infection or a significant environmental exposure that is causing inflammation in the brain. When you mention testing that was done, did they indicate if results ruled out PANDAS or another type of infection? I would suggest looking
  12. Hi -- we really appreciate this detailed report and it's heartening to know that you've found some answers for your daughter. I especially appreciated knowing what Environmental Health Center of Dallas. I wasn't sure how things were proceeding after their founder. Dr. Rea (who was on our advisory board) passed away. They were always excellent for mold issues plus so many other environmental issues. I applaud you on moving out of your home to get here way from mold, and you've seen an improvement. I can imagine a rotation diet would be too much to try in someone else's home without a functionin
  13. Hi Always Worried Mom -- I hope you have a response soon. You have a complex post (as many PANS ones are!) and we know a lot of parents are maxed out trying to deal with virtual learning. If you would like to explore approaches that we often recommend for tics, please drop me a note through our contact page on the website https://latitudes.org/contact-us/ Let's hope you find some good answers soon, Sheila
  14. Hi usernamecat, I know it's so hard to limit screen time these days! Schooling often revolves around it. I'm sorry, I hadn't noticed your question about the environmental allergens. So much depends on the situation. Some sensitivities can improve with time and avoidance. And some allergies may improve with age especially if the immune system is strengthened. Of course, treatments can also reduce the response. But if someone has a mold allergy, for example, and they continue to live in a moldy home, their symptoms can be expected to be aggravated. The classic approach is "avoidance, av
  15. Hi -- How did your follow up session go? I had never heard that a deviation in uvula is connected to neurological issues. This could be a clinical finding that your chiropractor has noticed or something more widespread. I saw a bit online about a possible connection to the vagus nerve. It would be interesting to learn more. Maybe you could ask him for more details on this, if there are any case reports he could share. Did you do the allergy test? Please give us an update and let us know how things are going if you get a chance.
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