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  1. Yesterday
  2. I would highly recommend vitamin Blis K12 from the company NOW to treat tic Pandas. It is an oral probiotic. good tasting, and really helps. Kids need to take it about 4 times daily.
  3. Child better but what are we missing

    Have you had your HVAC system or house checked for mold? Our son is allergic to some of the common indoor and outdoor household molds. We are suspicious that this is a trigger for him.
  4. Hello and welcome. Our son (15yo) is/was also a mild case. He had some eye blinking as a toddler but nothing consistent or alarming. Classic PANDAS appeared at around 6yo after a strep infection. We had tons of symptoms (tics, hyperactivity, encopresis, night terrors, insomnia, emotional lability, etc.) but overall still a bright, functional kid and no school disruption. He was positively diagnosed using the Cunningham panel, which also showed him on the mild end of the population. Other than some minor diet changes, we only treated with prophylactic antibiotics and occasional ibuprofen. Tics are one of his more lasting symptoms (infrequent now, but he still does flare a little). He did have some stomach issues that could have been from the antibiotic use, so we would sometimes take breaks and address his gut health. He is a happy high school student now, straight A's, no current PANDAS treatments other than probiotics. His tics don't seem to bother him at all when he flares now and they are much milder as well. Steroids are the ‘big stick’ used to get brain inflammation down when ibuprofen is not effective.
  5. Last week
  6. My 7yr old son has a button phobia, he's had it for as long as we can remember. Last month CAMHS suggested an ASC assessment. We'd noticed some autistic 'traits' anyway, but nothing to concern us, so this was fine. Since then new behaviours started to emerge, almost daily, all pointing towards PDA (Pathological Demand Avoidance). The volcano erupted. He BECAME a boy with PDA in 6 weeks. Then someone mentioned PANS, the symptoms/behaviours are almost identical but with PDA they don't 'just appear'. I don't remember my son having a strep type infection but he did have a horrible influenza bug at the end of August with high fever and fearful hallucinations. On Friday I convinced our GP to prescribe some antibiotics for possible PANS (which they'd not heard of), they've reluctantly given 1 week of Penicillin. We thought we saw improvement after 24 hours. However, 48 hours in and he gets a cough and cold which I guess can throw a spanner in the works. Q1. Has anyone else assumed PDA (or similar) when it was PANS/PANDAS? Q2. Does anyone know the recommended penicillin starting dose? He's on 5ml, 4 times a day (plus ibuprofen) and I'm wondering if this is enough. Thank you all :-)
  7. Fantastic news! I am going to give an odd answer, and then answer the way I think you wanted. There is something PTSD-ish about having dealt with a PANS/PANDAS child for years. PTSD (Post Traumatic Stress Disorder) puts any normal person on edge about the possibility of being re-traumatized. That terrible reality is something that can be worked on and changed for the better - there are tips and tricks and techniques that a few lines of reply here cannot possibly do justice to. This is just encouragement to investigate that possibility (when you have a bit of a breather, like now), and it comes as much from personal experience as from your question. I think that it is realistic that you used the words "inevitable flare", even though that doesn't help the PTSD-ish issue. (It would be so much better for the next little while to be free from that fear. The fear is exaggerated, though - that's how it works.) I have found myself over time evolving through 2 stages, 1) investigating all possibilities of triggers (and there are so many) when a flare happens, and 2) after some years, recognizing that the thing has morphed into a more complex immune system thing that don't necessarily fit the simple trigger theory (or else, the triggers are so subtle, they can't be teased out. The good news about stage 2, is that the child (ours, anyway) is better - we are into the smaller flares, not like the horrors of the past, and they are by definition harder to figure out. We have only started this 2nd phase (if my thinking is even correct) in the last year or so. So, if my thinking is right and there is such as thing as the stage 1 I described, and you are in it, it's a long road of getting familiar with what sets your child off into a flare. Some of what we have learned is weird - like the time our son had a huge flare after a teeth cleaning. Those things are most efficient to figure out as you experience them. You can read in advance about various experiences here or in places you trust, but its a lot of reading. If you start reading around, take comfort that you can also get help from this and other groups when a flare happens. In the meantime, have abx and ibuprofen handy (unless you have figured out that ibuprofen doesn't work). Another place to do some reading, if you haven't visited, is pandasnetwork.org, in particular http://www.pandasnetwork.org/your.../post-traumatic-stress/ for help with coping as a parent.
  8. Blood work for newly diagnosed TS son

    Hi and welcome to the forums. I'm sorry to read that your young child is having difficulties. We know that feeling of having no direction to turn to in how to help your child after a visit to the doctor, and hope you find answers soon. You have asked such an important question. There is not one perfect answer, as cases differ. But the Great Plains Laboratory has come up with a set of tests that you could consider. The lab can consult with the doctor/nurse if there are questions. You could review this list and see what seems to make a connection for you.Generally, insurance will cover some but not all of them. I do not know about Canadian insurance though. https://www.greatplainslaboratory.com/tourettes-tics-and-ocd/?rq=tourette syndrome Please see what you think. Did the symptoms come on suddenly or gradually? Feel free to share more about your situation. And am sending best wishes to the whole family.
  9. Hi. My son began antibiotics for Pans, Lyme and co infections just over a month ago. The transformation has been incredible. He wasn't in a flare- but I didn't realize after these horrible last few years- how far from baseline he was. He is doing so well but I'm struggling to wrap my head around what the future will hold- how to live life without spending every moment wondering when he will flare again and what will happen when he does.... So, I guess my questions are, what is the plan for when the next apparently inevitable flare comes, how do you keep going, and what, besides profilactic antibiotics should we be doing to prevent the next flare? I hope you all have some great ideas. I'm feeling so at a loss. Many thanks.
  10. Low Dose Naltrexone

    Hi EAMom, My DD21 has been on LDN for almost a year. We started at .5 mg nightly and slowly built up (over the course of many months) to 4.5 mg, then backed down to 4 mg. It has helped with sleep, OCD, and mood dysregulation. We originally started it because she was trying to do Low Dose Immunotherapy (LDI) for Lyme, strep, mold, and autologous but her body reacted negatively to the most diluted doses. We had two amazing weeks from LDI autologous, which we repeated a few times but we could not get any improvement over that. So after being on LDN for almost a year we are about to restart LDI autologous to see how it works now. From what I have heard from others, LDN works better if you are gluten and dairy free. Not sure why, but I'm guessing that would be true even if you were not taking LDN since gluten and dairy can cause inflammation. I have not seen any research about this. You need to get it compounded by a good compounding pharmacy. The cost is not that bad, depending on the pharmacy, especially is you buy 3 months at a time. I am not on this forum often so if you have any questions it may be best to PM me. Best, Nancy
  11. I should start by saying that is an amazing site. I always feel that I am alone on my anti-pharmaceutical island. My 6 year old was recently diagnosed with Tourettes. I feel like I was left dangling by the pediatrician without any directions on how to proceed. I have an appointment with our nurse practitioner as I want to do blood work to see if there any nutritional deficiencies. Without guidance from a doctor (we dont have a doctor as I didnt vaccinate my children), I need help. What type of nutritional deficiencies should I make sure to test for? Are there any other tests I should request? Bacteria? Can you test for Panada? Allergy testing obviously but anything specific...? Thanks!!!!
  12. Hello to everyone on here struggling with PANDAS. This is something that I had no idea even existed. A couple weeks ago my fun loving, enthusiastic, spunky 6 year old daughter woke up as usual to go school. As we were standing in the kitchen talking I noticed that her eyes were blinking rapidly every so often then rolling upwards. It was something that must have continued through the day because when she came home it was still happening. The next day it was a bit more frequent. We decided to take her to the pediatrician. The DR gave her a physical exam...checked her eyes, ears, and noticed her throat was irritated. As she said strep can make crazy things happen. They preformed a rapid stress test that came back negative. Over the next few days her personality remained the same as her tic became more and more frequent. Then we received a call from the Dr saying that they received word from the lab that she indeed has strep. Immediately we started her on amoxicillin. Over the next week she improved a bit each day. By day 9 she just had a slight blinking tic. Throughout these 9 days my wife and I googled strep and tics and were horrified to learn of the world of PANDAS. We made another appointment with our Dr to extend her cycle another 10 days. From there we aren't sure what to do. She Dr is reluctant to say that she has PANDAS because so little is know if it, but us willing to try to treat it at our request. We have made an appointment with a PANDAS specialist, but that isn't for another month. During this time period we are going to continue on the amoxicillin and see if the tics completely disappear. From there the pediatrician would like to stop treatment and see if anything returns. If it does, another round of antibiotics followed by years of low dose penicillin to keep strep at bay. From reading and researching we are gathering that if my daughter does have PANDAS hers is a more mild case compared to others, but no less scary as a parent. I see a lot of parents that have children treated with steroids as well. What is the reasoning for it? How does it help? I really don't know how I feel about having her on penicillin for the next few years, but I also fear the unknown of having a specialist work with us. Are there any parents out there that had a child experiencing only tics with their positive strep? What did you do and what are success stories? Thank you!!!
  13. I always thought herxes lasted for about a week. I suppose that if you lowered the dose of the herx-causing agent, you would reduce the severity at the expense of making it long - I don't have much experience with that. What we thought was herx, hit our son on about day 2 (of a new, effective abx),and lasted several days, slowly getting better after day 4 or 5. This is just one experience. The reason your question is important, is that you want to know that what you are experiencing is not an allergic reaction to something new you are taking, in which case it won't really go away with time. But allergic reactions wouldn't be a flares in OCD, I would think.
  14. Low Dose Naltrexone

    We tried a pill form for our PANS son a couple of years back, but we did not seem to see an effect one way or the other. Try searching "low dose naltrexone" or LDN in the search dialogue box at top right. Be sure you are in this forum, and it says "in this forum" to the left as you start typing in that dialogue box.
  15. Low Dose Naltrexone

    Hi Eliself, Do you know what dose you were giving? Did the flare happen immediately after the dose? Was this for you or your child?
  16. Low Dose Naltrexone

    LDN caused a severe flare/reaction for me, and I actually ended up in the ER. I was using the topical cream. The day after stopping it I was 1000 times better.
  17. tichelper.com

    Hi -- TicHelper is an online program that focuses on behavioral training to reduce tics. This is their FAQ link below -- you will see that it costs about $150, and other questions are answered. I'm not sure if any of our forum members have tried it. Hopefully we will find out. tichelper.com/faq/
  18. Hi, I'm interested in learning more about Low Dose Naltrexone. Please comment if you have any information or experiences! Thank you!
  19. tichelper.com

    Hello! Has anyone heard of or tried Tic Helper at tichelper.com? I just found out about it. Thanks for any feedback!
  20. Yes, I think you are right - abx and ibuprofen (and for some, the first can be slow/trial and error, and for others, the 2nd doesn't even work). I have heard some stories of parents that were really frustrated when nothing was working, and in desperation, took their child off everything, and the child improved. We have had some negative reactions with supplements, so this is one desperate act to consider. Its a long-shot, especially if the child was put on each supplement one at a time, so you had time to see reactions. It also doesn't fit well with timing you mention, but on the other hand, if immune systems change (with time or seasons), then maybe a supplement that was ok some time ago is no longer so. I have heard of this, though I suspect it is also quite rare. Just another complication that makes it so hard to figure out what is going on.
  21. I agree- it’s so frustrating to find the triggers. We are still dealing with the flare. DS is on Amox-Clav and Ibuprofen. Looking for some way to tamp the inflammation down - herbs and supplements are not working (or work too slowly) 🙁🙁🙁🙁 I sometimes feel like there are just no quick and good options when a flare hits- it’s abx and Ibuprofen or really nothing else- unless you want to try a major intervention like steroids or IVIg or Plasmaphoresis
  22. Sorry, I have been out of country and somewhat out of touch. I agree that the August start rules out school germs. If you can't find anything else in the environment that starts mid August, it could be that it happening two years in a row at roughly the same time is a co-incidence. For the odds of that kind of co-incidence, take the difference in start time between last year and this year, and divide that time into the year. So, for example, if that difference in start time was one month: one divided by 12 months in a year makes the second time it happened a 1 in 12 chance of being a co-incidence. I wouldn't ignore that, but that is technically below what most statisticians call statistically significant (which is typically 1 in 20). If it happens for a 3rd year also within one month of the other 2 years, well that will be (1/12) x (1/12) = 1 in 144 - much more unlikely to be a co-incidence. This is the classic problem all PANS parents face. We do tend to believe that there are specific reasons for a particular flare (rejecting the common response from some non-believing doctors "these things just wax and wane" - as if there is no cause and effect). We have repeatedly linked many of our child's flares to specific illnesses in the house (e.g. his symptoms went through the roof the day after his mom was unusually sick), so my wife and I truly believe there are triggers we can identify. After a few years (for us), things have morphed: more blurred, less obvious (though we still have some clear causes that we see). The immune system seems to change after time (including, for us, for the better with the recent start of our son's puberty). So, it seems theoretically possible for the normal external things we track (sicknesses, environmental triggers) to stay constant, and a flare to happen because of some (complex) change in the body/immune system. There is still cause and effect, but if puberty and the weather (per dasu's link above) can change the immune system, then our problem of identifying a trigger and some specific action to take against it is so profoundly difficult. We could double-up our effort to look for strep with our own swab kits (in all sorts of hidden places, not just the throat - I know a mom that swabs boogers), check sinuses carefully, get a tonsillectomy, check everywhere for mold, keep an eye on loose teeth - the list of established triggers is long. I have to go now - will continue another time, probably tomorrow.
  23. I have emailed you previously, but wanted to ask how your son responded to therapy when starting. My son has worked with therapists who specialize in anxiety/OCD and has struggled previously with the ERP portion so we have backed down to ACT therapy with our current therapist. However, my son fails to consistently apply any tools learned to the OCD thoughts. Therefore, I feel like it is misty a waste. How did your son stay engaged in therapy and learn to apply the strategies?  I want him to not be consumed by the compulsions, but he does not seem to have the motivation to work at reducing them.  

  24. Earlier
  25. Decided to chime in on my son instead - PAN/ADHD 2016 was a horrific year for us - my twelve year old suffered terrible anxiety, school refusal, agoraphobia, along with suicidal thoughts, all comorbid with his ADHD. Despite an anxiety/school refusal treatment program, we still ended up pulling him out of his private school in February. We enrolled him the public school with the hope at least of getting an IEP for him. To the shock of everyone, he actually did well . . . going to school, and making it through class. He even started leaving the house again. Just when I thought we had passed the rough waters, we were back in the same boat in seventh grade. He started off strong, but within weeks was in melt-down mode. The school refusal started again, and life was a living to get him out of the house. Despite my hesitation to start him on meds again (I believed it to be the Stratterra for his ADHD that caused him to become suicidal), I was desperate and we started him on anti-anxiety meds. There was absolutely no impact on his anxiety from the medication, but rather, he began to show signs of OCD. He would tell me he felt the "need" to spin around or walk a certain way. With zero improvement in the anxiety, it was a no-brainer to discontinue his medication. While the anxiety remained, the OCD symptoms disappeared We then had him work with a school refusal specialist. Ben was awesome, and would literally show up at the house those mornings when we couldn't get Michael to school. He gave us some great tips for overcoming the school refusal, and for the most part they worked. That, and with an IEP in place, we had a much smoother year. And so far for this year, it is like night and day. So not sure how much puberty had to do with it . . . something really triggered him. ADHD is still there but that seems manageable compared to the anxiety and school refusal.
  26. I've been dealing with tics since my childhood. I am 24 years old. I've tried tons of methods. I've found 2 good ways by myself to reduce tics. I have Neck moving right and left, breath out many times loudly and tighten my legs etc. So I've tried to push tics away, not responding any pressure any tics but made worse and then I've tried to direct my tics. Let me explain with my poor english. First tip; My goal is reducing "visibility". Because i'm tired stopping tics completely. When I feel the pressure to "breath out or neck moving"(more visible tics) i tighten my legs(less visible side). It's like guied the tics over my legs. I feel like the energy want to comes out so i let the legs do the job until feel relaxed. When I tighten my legs 2 or 3 second the pressure was gone and in public that would be less visible. Second tip; I've directed myself to do all tics "only" at home. I've worked on this about months. I've hold my tics in public or school. If I can't hold the tics anymore. I go to toilet or some place that I can be alone I release my tics and when i feel relaxed i move on. So when I get home I don't do over thinking about tics , I do tics so hard I've never stop any pressure, I do all tics and realesed myself. I am 24 , it took almost 18 years I've reduced %60 percent of my tics. Last of all being overweight and drinking too much coffee increase my tics so i walk 20 minutes everyday and drink coffee once a week.
  27. We tried Vit D mega doses last year and a whole bunch of supplements to fighting inflammation. I’ve come to realize that only a massive intervention can end a flare - and am thinking of steroids. prednisone did not work for us so are there any other powerful drugs that can do the trick? The alternative is to chug along for months on end with endless pills and blood draws and sleepless nights. Our DS is a trooper but I can tell his confidence and optimism is running out...
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