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  2. When my son was 9 he had tics were so bad he was put on Haladol, I tried drugs and it was terrible side effects , I met a lady at Stemtech (Mannatech now) and put my son on Ambrotose , along with a natural no dyes multivitamin with b complex and zinc. Within 2 months his tics were almost gone, He is now a man and no tics. It might not work for you but several people it has helped .I'm not involved with this company now but I had to let you know
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  4. Sorry I didn't notice your response until now. Well, we are wanting to replicate for good measure, but as a first approach, we are trying to partner with folks that have existing data sets. They don't know the SNP, and I don't see their data in advance, so I feel that blindness protects us from a certain kind of p-hacking criticism for already-collected data. If working with others falls down, I might consider doing the replication with data collected as we did in this first round. I would be happy to let you know if you wanted to contribute. As to your 2nd question, the simple bonferroni correction was applied for our finding. So, the target p for significance was 0.05/10,340/2 = 0.0000024 (the /2 was because we were checking both tails), and because we were well under that simple correction, we didn't do anything more sophisticated. But this target also left some possibilitiies that might be significant as undiscovered. I have understood bonferroni to be pretty close to the reality - do you know differently?
  5. Here is the archived webinar for anyone interested who could not attend https://njcts.org/tourette-syndrome-help-control-your-tics-by-learning-what-triggers-them/
  6. I was thrilled to find this forum and realize that I'm not the only one that does this. I've been counting the number of letters in sentences and phrases for as long as I can remember. I don't count spaces or punctuation and will add words to make the total number of letters end in a 4 or an 8. I'm not sure what's so special about 4 and 8 except that they are even numbers and 8 has always been my favorite number. I agree that it's a fun party trick and people are amazed at how quickly I can tell them the number of letters that were in a sentence. I'm now 56 years old and for me, the party trick has grown old. I wonder what I've missed out on because my brain is constantly counting. I find it difficult to read a book, listen to a lecture, or even watch a movie because my brain won't stop counting. I can literally watch an entire movie and not remember what it was even about the next day. Has anyone successfully been able to stop this behavior? I began reading a self help book, but can't seem to get through it. LOL I had a counselor once tell me that I developed it as a young child as a coping mechanism. Possibly to disconnect from arguments going on in my household. Instead of listening to the argument, I would count the letters. While I understand that I probably did need this at one time in my life, I don't believe I need it any longer. I have had a fairly successful life and career, so I don't think it's really held me back, but I often wonder what I could do if I had that brain power back.
  7. There is overlap in symptoms for autism and PANS/PANDAS. Some kids are diagnosed with ASD and later with PANS/PANDAS, and when they are treated for PANS/PANDAS the ASD diagnosis no longer applies. Some of the increase in ASD diagnoses may be misdiagnosis of PANS/PANDAS.
  8. Interesting... I have no idea about the titers, but my dd gets VERY spectrum acting when feeling her worst. We even paid for an evaluation to rule out Asperger's. The diagnosis from the psychologist was "PANS", but whenever we discussed her behaviors, the woman would repeatedly say "That sounds just like autism". I think there was one test my dd took that made her think more PANS, but she clearly thought there were some overlap in spectrum behaviors. Dd developed normally also. Then she would hit these rough patches where OCD and anxiety would rage their ugly heads. So now I think I'll have her mumps and measles titers checked out of curiosity. Aside from the fact that Merck is being sued for the vaccines not being as effective as they claim, so it would be a good idea to know that, also.
  9. My DD was diagnosed with PANS in February 2017, it was triggered the summer before in 2016 by coxsackie and then influenza in the winter, which was what pushed her over the edge. She presented with the full list of PANS symptoms in 2017 and has recovered I'd say about 90%. Recent bloodwork showed extremely high measles titers - 273. Has anyone else seen this in your PANS/PANDAS child that is NOT on the spectrum? Our ABA therapist, who we hired to help DD work through OCD and anxiety related to PANS, has noticed other behaviors that she sees in children on the spectrum. This was surprising to me because DD hit all developmental milestones appropriately and had very typical language, social, and motor development. My background is special ed and I have always been on the lookout for these things in my children, so it would be very surprising for us to realize an ASD diagnosis for her at 13yo.
  10. Hi Fiddlegrl, welcome! This is a good forum to be part of. I'll chime in as well, for much of what you describe resonates, and I can share our experience on a few specific things you brought up. My DS19 has had the PANS Dx for ~ 4 years, after a sudden onset with very high anxiety, OCD, Very high CamKII, cognitive and neurological symptoms, separation anxiety, inability to do schoolwork, and more recently anorexia with feeling full quickly. He's quite a bit better, except for miserable water-triggered itching/hot/cold/tight sensations, and a chronic headache which is debilitating depending on sleep disruption. Possibly from: initially unrecognized tick-borne infections, chronic mold exposure. Increased susceptibility due to Ehlers-Danlos syndrome. I'm rarely active here now due to family issues & needing to get done triage/clean/dispose of stuff from our mold-contaminated former home(I wear wearing haz-mat suits, shower after....). You mention: "Feeling full quickly when I eat, which has resulted in dramatic weight loss". Been there and much better now! My tall DS19 had that last fall, and went from >130# to 114# (at 5'11"), so it was scary. along with a dramatic worsening of his anxiety, executive function, memory, mental resilience. High IgE >1500 (normal <150). We're pretty sure it was triggered by unknown mold exposures from classes begun in August (verified by ERMIs). Fortunately someone suggested he be tested for mast-cell activation syndrome (MCAS), and his allergist concurred, and another MD suggested that the rapid satiety and long fullness are symptoms of gastroparesis and MCAS. The first line treatments for MCAS are antihistamines (H1 inhibitors) & H2 inhibitors (antacids like ranitidine, Pepcid). If those don't help, add montelukast sodium (Singulair, a leukotriene inhibitor) . Third line are Gastrocrom (cromolyn) before meals, a non-absorbed mast-cell stabilizer that quiets the GI system mucosa, and/or Ketotifen, which is a systemic mast-cell stabilizer. The last two + stopping mold exposures (see below) have been magic for my son! Less than 2 weeks after starting ketotifen (and after stopping mold exposures) he had some days when he could eat; by 4 weeks he was eating full meals, gaining weight. At this point we do gastrocrom only before high-histamine meals or leftovers. (should do low histamine diet -- soon. sigh.) I've now done the ERMI test multiple times on my own and via a certified environmental hygienist (CIH) who specializes in patients with mold-triggered symptoms. It's much more reliable than air testing, assuming it's done well. What's great about ERMI? By wiping rarely-dusted surfaces gives you sample the mold that's settled over weeks or months, rather than what happens to be air-borne during a 5-30 min test. More importantly, an ERMI is based on PCR (DNA analysis) of mold fragments as well as live spores. There's usually hundreds of times more mold hyphae fragments than spores, and <0.3 micron fragments get deep into our lungs' alveoli (and thus our blood). And the mold fragments are covered in the bio-warfare agents we know as mycotoxins, so they cause as many issues whether mold is dead or alive. How do you do a good ERMI sample? Generally I test places w/o carpets, so I use Swiffer wipes. I use the CIH's best practices: Supplies: a new, unopened box of unscented Swiffer wipes, 1 Qt & 1 Gal baggies, and surgical gloves. I wash my hands and put on surgical gloves. I pre-load a set of ziploc baggies -- one swiffer wipe each and I add 3-4" of masking or scotch tape for easy labeling. I prep those into a 1 gal bag, with gloves & a thin permanent marker, and another 1 gal baggie rolled up to collect the dust sample bags. When it comes time to do samples, first I look for what's not been dusted recently. Then I label a baggie, put on gloves, and fold the swiffer wipe to expose a 1/6 section of the fuzzy side, then wipe lightly, turn to expose a clean part, move elsewhere and repeat till all fuzzy parts are full. I wipe high and low: tops of picture frames, tops of a lamp, fans, tops of baseboards, outlets, within toy boxes, under beds or fridge, etc. When gray I re-fold, put into the labeled baggie, and eventually download from Mycometrics or EnviroBiomics their order form, "Chain of Custody" form, number the samples, ensure the labels match the description on the form, and send off. The CIH recommends to do LR/K as one sample and bedroom as another, or in a multi-level home, to do one per level. NB: If you find actual mold, don't wipe that -- instead get a clean piece of scotch tape, press a piece to that, and tape to a baggie. You didn't ask about this, but I found it incredibly validating to do urine mycotoxin testing on my son. This measures the mycotoxins eliminated through urine, and so indirectly the load within the body. The two key companies that do this are Great Plains Lab (using the very precise LC-MS/MS) and Real Time Lab (over a decade of experience, older technology but broader set of mycotoxins). Neither is cheap. However I learned that my son's Ochratoxin A levels were 20x their upper threshold of normal, plus he had elevated levels of aflatoxins, gliotoxins, stachybotrys-related toxins, etc. This confirmed that we were on the right path. Repeated tests showed that he wasn't clearing those well on his own, which is why even after we left our mold-contaminated home, new sources of stachybotrys sent him into a bad downward spiral. And that it really was important to keep him from water-damage mold exposures, reduce sources of inflammation, and to improve his body's elimination. I hope that helps. Keep writing questions. It helps us to be able to share our hard-won knowledge, to make it a bit easier for others. Wisdom_seeker
  11. Just a reminder of the FREE Webinar tomorrow (April 17th 2019) 7:30-8:30PM USA Eastern time, with our own Sheila Rogers discussing: Tourette Syndrome: Help Control Your Tics by Learning What Triggers Them Hosted by the New Jersey Center for Tourette Syndrome Here's the link to register for the webinar https://register.gotowebinar.com/register/2536890380098133249
  12. I think it depends on your age. I have had two episodes of PANDAS in my life. First was when I was 11 years old. Sudden vocal repetitions of phrases when spoken to and lots of hand washing OCD. I was a happy, not anxious, middle schooler and I felt mostly normal - I just had these vocal tics and OCD. I went to school but made accommodations with my teachers not to call on me in class and my parents explained to my friends what was going on. This went away slowly with 6 months of antibiotics and I was in remission for 10 years. I went on to be a recruited division 1 athlete at a top 5 university and was happy, popular, and felt like the luckiest person in the world. I thought I was done with PANDAS. Now I am in my early 20s and battling a much stronger PANDAS/PANS relapse. I have no tics or OCD at all just debilitating social anxiety, depression and obsessive thoughts/worries (which are actually considered a form of OCD) that came out of nowhere three years ago and slowly built up in intensity until I had to leave college. This time around has been more challenging as Lyme and co-infections are involved and I haven't gotten better yet after a year of antibiotics. I think older PANDAS patients experience more amygdala-based inflammation (mood/anxiety issues) whereas kids experience more basal ganglia-based inflammation (tics/OCD). Just my two cents.
  13. Earlier
  14. From the NIH website on Ehlers Danlos Syndrome: There are lots of genetic mutations (known and unknown) that result in connective tissue issues, so whether a kid gets the Dx depends on whether it's on the doctors' radars, and how severe the symptoms -- and the severity will depend on the kid's genetic mutation(s) and the child's activities --like gymnastics, soccer, or simply showing-off double-jointedness). My son with PANS also has hEDS, and probably I do as well. EDS is supposed to be quite rare, with a 1:5,000-10,000 incidence, but it's suspiciously common among PANS patients. The Stanford PANS clinic says it's not uncommon in their clientele. I subscribe to the theory that EDS likely weakens gut integrity as well as blood-brain-barrier integrity, so perhaps antibodies to strep or mycotoxin fragments may more easily get into the brain. And bacterial overgrowth or the disruption to the gut microbiome (from inflammatory food and antibiotics) may be enough to let food and bacterial fragments in to get tagged as invaders and create an inflammatory state which ... always weakens blood-brain integrity. As far as stomach pain, apparently it's very common in PANS. DS19 developed one variant called mast cell activation in his stomach and gut, making him go from hungry to bloated within a few bites. Not good for a teen boy. Fortunately he's gaining weight again.
  15. Bob, are you still looking for add'l PANS datasets to include in a validation set? And as far as the p-value above, did that include some multiple-comparisons correction? (I know that's a not an obvious process, it's easy to over-correct if you do it blindly).
  16. I have past positive test results for Lyme, Bartonella, Babesia, Relapsing Fever (B. Hermsii), Rickettsia. I spent the past year treating these infections with antibiotics and herbals and two IVIGs. I have never had any physical symptoms of the above whatsoever, in fact I have managed to stay very fit and workout 5 days per week throughout most of my treatment. All my symptoms are psychiatric PANDAS/PANS-like (24/7 extreme social anxiety, depression, obsessive thoughts/worries). Whenever I have treated any of my Lyme, co-infections and candida, I get a significant increase in my PANS symptoms along with some fatigue (never physical pain). I also don't really feel I ever improve with detoxing (epsom bath, alka seltzer gold, detox supplements, etc.). I have alway been under the impression that this is a herx, but I came across this article and thought it would be relevant to share: http://lymemd.blogspot.com/2017/08/autoimmune-encephalitis-and-lyme.html Based on this, "herxing" that lasts weeks on weeks and months on months and doesn't improve or change isn't actually herxing. It is continual triggering of the autoimmune response which is not helpful or beneficial at all. I was always under the impression that my feeling worse with increased PANS symptoms was the Lyme/co-infections dying off. Now I am thinking that all of that "herxing" may not have been necessary. Chances are, even though I have/had these infections present (and as we know you should treat infections BEFORE immune therapy/IVIG/PEX), my immune system was strong enough to hold them at bay and my only issue was the PANS autoimmune component. I hope this may be helpful for other people who have been in the same predicament as I was and if anyone has any insight on this I'd much appreciate it. Is my thought process above correct? Having just finished 7 sessions of plasma exchange, I am about to embark on 6 months of monthly IVIG and my plan is to avoid stirring the pot and re-triggering any autoimmune response while my body adapts to the IVIGs. For me, this is looking like using Buhner's more gentle approach to keep any remaining Lyme/co-infections in check without triggering my immune system into reacting and exacerbating my PANS symptoms. It has been a miserable road for me, especially in my early 20s when the rest of my friends have moved on and finished college and started their lives. I have yet to see any improvement and it has been 3 weeks since PEX. Only way to go is forward.
  17. Thanks Chemar. I have not tried it yet - not sure of what it is for other than it works at a cellular level. The issue is the naturopath we work with doesn't have much experience with kids so I am kind of wary of trying things as such on my 6 year old. Didn't try the probiotic either they suggested because one of the folks on one of the groups said streptococcus faeclis strain to be avoided. My sister said curd / yoghurt best probiotic - but it does not agree with him and causes him cold/cough. So I am just sitting on the fence.
  18. After checking 10,417 SNPs in the PANS genetics data sets that were donated for the above study (from this and other groups), we finally found one that does have a "statistically significant difference" in incidence between 68 PANS kids (who are mostly of European ethnicity), and a representative general population. This is not at all like Huntington's, where if you have the mutation, you've got the disease, and if you don't, you are clear, 100%. Rather, it is like what we know so far of many immune disorders, where there are many gene mutations (even hundreds of them) that are associated with higher incidence of a disease/disorder (i.e. slightly greater chance of having it with a mutation, but nothing guaranteed either way). For our SNP, almost half of PANS kids don't actually have the risk allele. But a much smaller fraction doesn't have it in the general population; that is the reason it was caught as statistically significant. So, the interesting thing about this mutation (a SNP allele) is that it has been linked to MS in another formal, published study. When we couldn't finding anything significant with all the "popular" SNPs that people were paying attention to (like MTHFR and FUT2), we eventually branched out to checking ones associated with diseases, particularly autoimmune diseases. We aren't going to announce the specific SNP just yet, because we are interested in corroborating it with a second set of data. We don't absolutely need that corroboration (because the result is clearly statistically signficant, p=0.00000015 for those that are familiar with p-values), but a replication would make the find so much stronger.
  19. DS16 had a brief fear of spiders, now gone I think.
  20. I just got plasma exchange almost 3 weeks ago after a year of treating candida, Lyme, Babesia and Bartonella. I am really struggling right now with symptoms (mood based with anxiety, no OCD or tics) and haven't seen any improvement yet. Would love to hear others' stories of healing from PEX and how long it took to notice improvements. I almost feel like I'm getting worse. I'm 25 and just want this suffering to end and to get my life started.
  21. Hi Ashly Sorry no replies yet. My son's multi has always had some coQ10 in it, both when he was a child and now as an adult. But as he didn't take it as a separate supplement for anything specific, I can't answer your question directly, other than to say I know it is a very helpful supplement in general. How is it going on the CoQ10 for son?
  22. @h202 Although he wasn’t diagnosed with ADHD until age 8, my DS also had ADHD and sensory issues since infancy. We used conventional therapy and treatments until he was almost twelve.... 2 1/2 years on anti-psychotic which increased OCD and caused violent behavior. We were continually told this was coincidental that it began at same time as medication. Prior to using medication, his first grade school year was amazing. This was before we had any knowledge of PANDAS. He was treated with back to back doses of abx for a sinus infection. Again, in retrospect, it appears that his ADHD and sensory symptoms subsided from abx. We have seen 2 different integrative MDs in past 2 1/2 years. Both say that his PANDAS onsets began as infant. He responded beautifully to abx in 2016, but wasn’t lasting. From my understanding it’s a 2-step process. First getting rid of infection, then turning off immune response (that’s where IVIG comes in). It seems kids that get the IVIG younger, respond better (i.e. don’t necessarily need continual treatment). I wish we knew about / were able to get IVIG sooner. As for the bug fear, it went away while we had abx success and from IVIG. The bug fear was only the beginning (this was right before he turned eight). It escalated to one of the worst PANDAS cases that I have read about. So bad that conventional psychiatrist diagnosed him with Schizophrenia. His turnaround from IVIG is miraculous. As a side note, don’t ever use Miralax. It has been linked to OCD and other psychiatric symptoms. Seems to especially affect kids with autoimmune issues (like PANDAS).
  23. Maryangela - thanks for your response! It sounds like you have a kid like mine who has pandas and also adhd - is that right? Or did he only have adhd symptoms because of the pandas? My son has had adhd symptoms since infancy..... The adhd med we are currently on (concerta) keeps him pretty close to his natural personality (which is very happy, go with the flow -- which is why, when he suddenly started being defiant last year, we knew something major was going on). Previous stimulants made him moody. I am trying to follow your timeline: what happened to the bug fear? Was it just that one summer? Did it eventually go away? What do you think made it go away? It's interesting because if you google adhd and bug fears, there are a ton of people talking about the correlation. But if you google bug fears and pandas, or specific phobias and pandas, there aren't so many hits. I'd love to have someone tell me that's it's most like the adhd (or stimulant) and not pandas. Because we can deal with the adhd. Versus if we think the bug fears are pandas, then we're looking at much bigger questions. For instance, his pandas symptoms have all responded very quickly to abx. But the bug fear doesn't seem to correlate to when he's on abx. So i don't even know what treatment we'd do for this. Would we do ivig because we *maybe* think this is a symptom?
  24. @h202 The summer before my DS’s first major PANDAS onset, he developed a fear of insects. He avoided all outdoor activities at summer day camp, and would panic at home if a fly or fruit fly got in the house. In retrospect, this appears to have been the beginning of his onset. Although he had OCD symptoms, his psychiatrist said she would never prescribe a stimulant to someone with OCD, as it would exasperate the OCD. After a hospitalization, he was put on a stimulant (Focalin, later switched to Metadate) and indeed, he developed a compulsion to pinch me. This was his “happy” pill, though. It completely changed his mood when we gave it to him right before school, but he would “crash” and nighttime was unbearable. He also wouldn’t eat from after breakfast until bedtime, and lost a lot of weight. Ultimately after a year and a half, he developed priapism from the med after an additional dose was added during the school day. ....fast forward 4 years after taken off stimulant, and he his medication free. He has been receiving monthly IVIG for almost 18 months.
  25. Son (7) was diagnosed with Pandas over a year ago, treated and generally went into remission by June 2018. After going off abx in September, he had one flare last fall, and possibly a small flare this last January (both immediately treated with abx, and symptoms immediately resolved), but otherwise he is back to baseline. His primary symptoms were hyperactivity and rage/defiance. He never had classic tics or OCD. I know ocd/anxiety can look different in different kids, but his specialist confirmed he didn't have oct/anxiety. She said that she anecdotally sees a subset of boys with preexisting autism/adhd/add whose pandas doesn't always have tics/ocd/anxiety. Because he has been at baseline for a while, we stopped abx at the end of february. Son has had a minor recurring fear of insects for some time. Hard to pinpoint when it started - sometime last year. It just wasn't a big deal and we didn't pay a ton of attention to it. The fear had gone away for a while (probably since last summer) and then after xmas picked up a bit. A few weeks ago, it escalated significantly and for the first time is now a significant impact on his life. He freaks out when he sees anything that could be a bug. Sticks with the teacher at recess for fear of bugs. No longer wants to stay after school at the playground. Runs from the car to inside after school. Really freaking out when one gets near him. Hard to console. As soon as he gets inside, he's immediately better. We have not had any other signs of pandas since at least January (really not since November). In fact, son has never been better personality wise. Well behaved, happy, non-defiant, etc. My preference is that this has nothing to do with pandas. He is also medicated for adhd, and we've struggled with side effects from that (both the adhd and the medication can cause weird symptoms). But it's very difficult to tease out what is tied to the adhd/medication because he needs it for school - so we can't really take him off the drugs. Has anyone seen a lone anxiety without any other symptoms of pandas?
  26. This is a while out so not sure if you will read Yes to all. My sons stomach ached all the time and he complained of leg pain and at times couldn't walk out of no where. He is also double jointed
  27. Hi all Have been consulting with a naturopath and she has recommended coenzyme Q10 for improving digestive health and energy for my six year old son. Anybody has used it before and has it helped in digestive or any other areas? Please do let me know....His stools tend to be not well formed and loose. Sometimes he goes twice in a day and sometimes once in two days more or less on similar diet. Thx so much, Ashly
  28. Hi. I know this is a couple of years old, but I was wondering how your daughter is. Was there any diagnosis? My heart went out to you, as my grandson , who is 4, is going through something similar now. Alot of his tendacies started when he was 3, but this past month has quaddrupled in severity. I worry both for my grandson, and my daughter and son in law. They are thouraoghly exhausted and are getting no answers from doctors they have seen so far, so I am doing some research for her. My prayers are with you. Christa
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