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  4. Has any PANS or PANDAS parents experienced COVID with their little ones? Research, case studies, info appears to be nonexistent. Thanks
  5. Has no one responded to this message? Looking for any PANDAS parents with COVID experiences. Research, studies, feedback appears to be non-existent at this time.
  6. @NurseMom21stay strong, your daughter needs you more than ever. I pray to god that you get the help and support to help your daughter get better. Please keep us posted on PANS/PANDAS result.
  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. Hello everyone, I am curious if anyone has experience with coprolalia? You can read our full story in my other posts, but last night my daughter's tics evolved to include swearing. Her tics started 3 months ago and so far she has been diagnosed with "transient tic disorder". Her tics are very severe and include complex motor and vocal tics and occur daily, every few seconds without any breaks. I have read that coprolalia is actually pretty rare with TS, and I am trying to find out if anyone WITHOUT TS has had symptoms of coprolalia? Or is this an indicator that she does in fact have TS
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  11. Hello Again Everyone! I'm sorry I have not been responsive to reply posts, but I have read them all, and I am so sorry for everyone else going through this. Someone asked I provide an update, so here it goes...(sorry this is going to be long, but please read and check out the video at the end of her tic storm from last night) Since my last post, my daughter's tics have been like a revolving door. The only consistent aspect has been that they have been present daily from the time she wakes up until she goes to sleep. They occur at a rate of several complex motor and vocal tics pe
  12. Also I don't know about the violent thoughts but sometimes I wonder what would happen for example if I jumped out the window. I don't want to die or hurt myself in any way though. When I have these kind of thoughts I try to think about the things and people that make me happy. Hope this helps and good luck !
  13. Hey I'm so glad I found this whole thread. I'm 21 now and have been counting letters in written sentences for a few years now. It's kind of bothering me when I'm watching foreign movies with subtitles. I also count the stairs and my go to number is 16. It has been since I was a kid. When I count letters in my head in french (my first language) it has to add up to an even number. But in english I don't mind it so much I don't know why. I also have this thing kind of like misophonia but with sudden and loud noises. I get really stressed, sweaty and my heart races when there's a loud noise.
  14. So we have had a long road and rough road. if you go back to our stories, my daughter has gone through doctors and finally been stable with her doctor for almost 6 months. IVIG for 4 months. Her dr paid for my daughters Lyme test and it came back positive. her intrusive thoughts are worse than ever. We have an appt with a holistic lymes dr but all of this is non affordable. My son also has this and so so I. Any advice? I have been looking Into the buhner method and I’m just all over the place! I pray for all of you out there struggling and thanks for all prayers for us as well❤️
  15. 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
  16. Hello Everyone! NurseMom21, Mommymom, Momxiety, WorriedMum, Sheila, LLYNCH & Chemar. Thank you all for sharing your experiences here. Your posts help us to brainstorm here in our family and we are so sorry that there are so many children and parents struggling out there with these awful symptoms. I hope that some of you will have had better days since you posted or have found some things that are useful to get some relief. I just saw that I posted 20 days ago. Re-reading that, it's difficult to see how things could have got much worse than that but we have just been through ove
  17. 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
  18. This is all so hard. I have four children 19-11 and I have never experienced anything more difficult than what I am going thru with my sons tics, he is 11. And we have had some whoppers and auto immune issues. For my son, he broke his wrist playing baseball and I began to notice slight movements in his hand and I thought it was the cast. Cast came off and I still noticed. Then it was facial grimacing when he would get off the bus. Took to any local neuro and he said those are tics.. ignore and they will go away. Well lockdown happened and It was mind blowing. We have tried three neurologist.
  19. Adding the invaluable Tic Trigger resource book here as well. Tourette Syndrome: Stop Your Tics by Learning What Triggers Them Guidance on identifying and managing triggers for tics and Tourette syndrome. Includes common triggers, family success stories, helpful resources, tracking logs, and more.
  20. Maybe have an IgG blood test done for food sensitivities/intolerances. It’s a finger poke and tests a large group of food. We had it done thru our naturopath, but I do know Everlywell has one you can order online directly. We did it for my child and removed the listed foods and the stomach aches and vomiting went away. Not saying this works for everyone though. Good luck!
  21. Sorry for the late reply! My daughter will get an occasional headache, but nothing that I would call a pattern with the stomach aches.( I however get terrible headaches that I can trace to things likes MSG and chocolate, just to mention it.) We did allergy testing through her allergist - it was the skin testing - and we've also done the food sensitivity test through a naturopath, though we didn't learn much from that test. We know she has the gene for celiac - but we've never done the official celiac test - she feels better when she doesn't eat gluten, and in order to do the official test she'
  22. We are on Nystatin to keep yeast away. It is working, but I am worried once we stop the medicine, it will come back. What has worked for your child to keep yeast away? My child can’t swallow pills.
  23. Hi All So we have had on and off success on guanfacine wiht our 12 yr old son who suffers mainly from vocal tics this past year. He seems to be very sensitive to it even at 1mg and anything higher makes him super drowsy. He also has the dryness in the mouth a lot as a side effect. We recently switched to guanfacine ER or Intuniv from guanfacine IR or Tenex. Its been a week on it and I am yet to see if it helps him. If I ask him, he says the guanfacine helps him upto 20% with his tics at 1mg.
  24. 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
  25. We have had exactly the same issue with our son, age 13. Around two weeks ago, some mild OCD type behaviours suddenly exploded into violent motor and vocal tics. He shakes and jumps and tenses himself up and screams at the top of his voice. We're pretty sure the neighbours must think we're maltreating him! His motor and vocal tics have been at their worst on waking in the morning and going to sleep at night, with three or four severe episodes over the space of half an hour each time. These have worried and upset him and us a lot. They were so bad he would practically go from lying to st
  26. It is awful when your child starts ticcing. You feel so hopeless. I think I was on the verge of depression in the early days (July 2019). When my daughter starting ticcing, it was like she suddenly developed ADHD at the same time and was bouncing off the walls. Thankfully after a month or two the hyper active behaviour stopped. My daughter has since been diagnosed with chronic tic disorder and anxiety. I have spent a fortune on various treatments in the hope of a cure. She started GABA last week (read about it on here) and her tics are pretty much gone. I know it could be a wane period
  27. Plaquenil is very well known today. The generic name is hydroxichloriquine.....
  28. Hi! Just moved to Evanston, IL. My 13 year old daughter was diagnosed with PANDAS 4 1/2 years ago and has seen Dr. Latimer in DC several times and is now a patient of Dr. K in Hinsdale. I am looking for psychiatrist that handles PANDA kids to update her psych evaluation and provide care. Also- any recommendations regarding which insurance company to choose that works best in IL for PANDA treatments? She needs annual- bi-annual IVIG. Thanks!
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