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Sheila last won the day on May 28 2019

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  1. Hi Katreya, and welcome to the Forums. So sorry you and your family are dealing with this. Your son sounds like a wonderful boy. I'm sure it's very hard for him to feel like his body is out of control. Does he have a history of allergies - or have you noticed chemical sensitivities? Does he have a history of any digestive complaints? It sounds like you have made some good efforts. You may need some professional support as well. Are you in the UK? Your boy could be triggered by chemicals, in a swimming pool and/or elsewhere. It's not easy to focus on a single environmental aspect, if indeed those factors are playing a roll. I don't know if you have been communicating with him about his tics, but sometimes it is helpful to refer to them as allergies and you could ask what seems to bother him, using this chart http://latitudes.org/downloads/triggers/kids/what-makes-me-tic.pdf You would know if you think that might be helpful. Sometimes it is a relief for kids to know that it is something causing his body to do things he doesn't like -- and then you can work to make changes to help. This would be an environmental approach, not that it is the answer for everyone. But since you have seen triggers already, it could be that this is moving in the right direction. I would suggest you please keep a log. You can find one here, if you are interested. I hope this helps. . . best wishes to you, Sheila
  2. Thank you for posting both those books, MaryAW I hope your mold detox goes well. Here are links for the two books on Amazon Break the Mold by Dr Jill Crista Toxic by Dr Meil Nathan
  3. 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
  4. 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 interesting that the facial tics are coming on in the evening when he's wearing glasses. Why is that the time he wears glasses? What is he doing at the time? Just for you to be aware -- and there are certainly no simple answers for everyone -- exposure to toxic chemicals, from pesticides to formaldehyde to scented products--are known to cause vocal tics in some individuals. Allergies can do the same, including mold. There are approaches that may be helpful without your boy feeling like you are dragging him to different doctors when he is not very aware of his tics. That said, it doesn't sound like he's been to a lot of docs so far--but it does seem you may want to change your pediatrician! Please let us know what you think of the linked article above and whether you see any aspect of it that resonates with your situation, okay? Also, you might want to post in the PANDAS/PANS forum for feedback.
  5. Those are really good insights, MLee. If you have time, please let us know how your doctor has you addressing the gut issues.
  6. 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 keep us posted!
  7. 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.
  8. 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 in healing your daughter.
  9. 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
  10. 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, Sheila
  11. 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. It's also a chance for children to learn from their experience, though no one would wish those severe reactions on anyone. Your milk observation is excellent also. One note-- in addition to the sugar connection you saw with his "sneak" foods, please also keep an eye on the colourings and preservatives as mentioned with the the gummy bears. It sounds like you are already doing an amazing job with monitoring and preparing food, so he may not encounter them often. But a little food coloring or preservative in even non-sugary snacks like in chips/crisps can cause similar extreme behavior in hyper-sensitive kids. It would seem your son falls into the category of "exquisitely sensitive." That does not preclude his healing. I just looked the black pudding up on the computer. As a vegetarian I was not familiar with it. (No comment! Ha. I know it is popular in the UK and many other areas). I hope your session with the homeopath goes well. One area to target is the health of the gut in general, to hopefully reduce food reactions. We will watch for more news when you get a chance. Thank you again for your posting -- and for your love, which we return to you! 💗
  12. 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 our contact page if you would like to brainstorm. https://latitudes.org/contact-us/ Wishing you all the best! Sheila
  13. 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 further for the cause(s) as soon as possible. I would like you to please contact me through the Latitudes.org website which is https://latitudes.org/contact-us/ so I can learn more and we can discuss options. (I'm not a doctor, just to brainstorm with you for next steps.) Wishing you all the very best, Sheila
  14. 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 functioning kitchen! I imagine your doctor would have warned you about renovations where you are staying -- hopefully they will be nontoxic, with non-VOC finishes etc. Please do keep in touch. We can all learn from your experience, in addition to being able to celebrate any successes.
  15. 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
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