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Sheila

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Everything posted by Sheila

  1. 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
  2. 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,
  3. 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
  4. 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
  5. 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
  6. 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
  7. 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
  8. 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
  9. 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.
  10. Hi Kate424, I'm really sorry I missed this. Have you been able to find any help for your son yet ? If not, please write to me through our contact page https://latitudes.org/contact-us/ We can arrange to connect and hopefully find what you are looking for. All the best, Sheila
  11. Hi SharingSheryl--I loved that: I am totally freaked out by it and my husband is totally not! Hah. That's not unusual, though sometimes the roles are reversed. It must have been a serious bout if you took her to the ER. I sympathize with all the family stress over work and am glad it sounds like you were able to stabilize things. Meanwhile, so many parents are frustrated with the reliance on screens these days. Great that you have reduced computer and phone time. Please let us know if you have seen any change with the allergy-free diet you started a few days ago. When you sa
  12. Hi usernamecat, welcome to the forums. I read your account and really sympathize with what you are going through. Many of us on this site also had the tears and emotional response you are having. The good news is that many of us also found answers. I can't make any promises but the fact that you have allergies in your family is actually encouraging. Both physicians and patients/families have reported that tics can often be more like an allergy of the nervous system than what we would think of as a neurological "disorder." We have an article that will give you an overview of the new t
  13. Hi Deb22 -- and welcome to the Forums. I agree LNN had some great suggestions. Just to let you know, we've received many reports on mold as a trigger for tics, as well as it causing other health issues plus behavior/emotional reactions. We hope you will keep in touch, letting us know how you make out and what new insights you come across as well. Best of luck!
  14. Hi MLee, So sorry to read about your setback. You should be able to get back to where you were soon. I understand food reactions can sometimes take 4 weeks to clear, but no doubt there's no hard and fast rules, so hang in there. Have you tried giving your son an antihistamine to see if it helps? If you do, please let us know. Also, some doctors recommend drinking baking soda (or trisalts) in water to help food reactions. Trisalts are on amazon--not expensive. Now that the initial period has passed I'm not sure how much effect it would have, but it is worth a try. Because he had
  15. Hi Katielyashenko, Welcome to the Forums. I'm sorry you having to deal with the emotional response of watching Max have tics. Most of us have been there, tears and all. But on top of that you've dealt with his multiple open heart surgeries--that experience is hard to imagine. There's good news on the tics, which is that there are often answers to what is causing them. It could be a reaction to something environmental, (allergens, chemicals) a nutritional imbalance, a yeast overgrowth, an infection, food reaction. . . or a combination. That's why the right supplements for his body could h
  16. Hi Vvny, I'm so sorry to read that he is having such major vocal tics. We can see if anyone answers about guanfacine. I'm wondering how is your son is when he wakes up in the morning compared to when he goes to bed at night? And when do they get the worst during the day? How were things before the lockdown? Hoping to hear back, Sheila
  17. I wouldn't lose sleep over this, though I understand your anxiety over it. Hopefully having his dad around will help keep things under control (great he is going)! Maybe Dad can privately help give some guidance on the food choices. If he had severe allergies it would be one thing--then strict adherence would be critical--but that doesn't seem to be the case, right? You know best what it takes in the way of certain foods to tip the scales and increase tics. If if he does go off script and has an increase in blinking it could be a learning experience and he can get back on track once hom
  18. Hi MLee, I've heard a theory that for those with an immune/allergy connection to their tics, just as allergies and sensitivities often improve with age, so do the tics along with them. I don't think research has looked in this direction though.
  19. Hi -- I'm glad you could see some connections with your daughter and some of the symptoms/conditions from the book. I hope the reference below can be helpful to your family. As in any situation, medical needs are unique to the individual and I can't predict if this will be a match for you. Wishing you the best! Sheila This doctor is active in the field of environmental medicine. (They are few and far between). I believe he is near Flint. i did not see a website for him. Gerald D. Natzke, D.O., FAAEM, DABEM 9475 Holly Rd Ste 205 Grand Blanc , MI 48439 Tel: (810) 344.4567
  20. Thank you for adding your feedback, ahmoy44. And it's good to know you had positive results with adjusting diet related to gluten, eggs and refined sugar. It's always helpful for members to receive encouragement on how lifestyle changes can help some people so they can try for themselves. How are things going, Sunflower78? Please let us know if there is any specific info we can provide that might be useful.
  21. Hi -- we are locking this thread so the conversation can be continued in the Comment area of a regular article. That way more people can see it and learn from it. I hope you will participate in sharing ideas there! Please see here. (https://latitudes.org/can-you-help-amelia-with-her-tics/) Thank you!
  22. Hi there and welcome to the forums. Where do you live please? (State/country)
  23. Hello Lenny and welcome to the Forums. I'm really sorry for the delay in responding, this totally slipped through! As Ahmoy44 said, you seem to be in the US. What area of the country are you in? I'm asking in case you would benefit from seeing an environmental physician. Allergy testing is a controversial field, with people--even on this forum-- turning to a range of techniques for allergy testing. Part of the issue is cost and whether insurance coverage is an issue. In general, I would not recommend the mail-in testing. A number of lab tests can be completed depending on the situatio
  24. Hi Ahmoy, welcome to the Forums. It is good to see that you have already made some helpful observations to help get you started in the right direction. Please check your email, I have sent a note to you there and we will look to provide more info here in the forum. Hopefully there will be more answers for you and your daughter soon. Sheila
  25. Hi Ashley, Please see this article by Dr James Greenblatt, one of our advisory board members, that includes a discussion of NAC. While not addressing each of your questions, I hope it will be useful. Wishing you all the best, Sheila https://latitudes.org/key-nutrients-for-adhd-ocd-and-tics/
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