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Hi there, just thought I'd post an experience for anyone searching. My daughter was on the usual path of motor/vocal tics for a few years starting at around age 5/6 till we really explored diet/environmental triggers and completely eliminated tics right around the age 10 mark, and she has been completely tic free for about 14 months. That includes many times of high anxiety, sickness, pressure, etc that can come with being a 10 yr old. In the past 6 months, we have tried challenge tests on a few foods. Eggs went well, and boy that made life easier. Dairy on the other hand was different. We tried challenging her with Fairlife for 2 days (lactose free milk, but it's still cow milk), and sure enough, mild tics showed right up and lasted approximately 12 days, then back to nothing. I only mention this because if you imagine a child who's system is being offended by multiple things, for a longer period of time, you can see how difficult it can be to isolate what is or isn't the offender.

Update : 11/19/2024 Hi Everyone, We started working with Dr.Piper Gibson on my daughter tics issue. She had her bloodwork/genetics tests done and looks like my kid has heavy amount of mycotoxins in her body, which probably came from mold in the house and mold from grains. My kid is also sensitive to many foods and she is intolerant to dairy/gluten/sugar Dr Piper suggested a 6 months protocol for us during which we have to go for a dairy free/grain free/gluten free diet She suggested supplements to flush out the toxins from her body and fix the leaky gut. The journey just started, will keep updating on how it is going, thanks for all your support

Hello! I wanted to share some things that I think may be helpful to understanding a part of the puzzle, for some, with Tourettes and also OCD. Many years ago I was an active member on this forum. My son, Daniel, has Tourettes and I have OCD. The very good news is my son is now 19 years old and honestly you would never know he has Tourettes. He is doing amazing. Once in a while I see a little eye tic but that is it (but barely only when he gets nervous. What a difference from when he was 7 to 10 years old). But I want to share with you some insight that may help some of you that I have learned. I know there is so much information out there and our bodies are so complicated that it is not a one size fits all issue. I have found out that there is something in our family that is definitely an issue that was influencing my son's tics and also my OCD. It is histamine intolerance. Meaning that in my family our bodies are getting too much histamine in our bodies and it is affecting our neurotransmitters ultimately in my son's tics and for me obsessive thoughts. There are many, many articles out there about histamine intolerance and what to do but this is a tiny synopses. Histamine occurs naturally in many foods. Also, some people just do not have the right enzyme base to break it down or their bodies are just poor at processing it and what happens is your get this build up of histamine that ultimately changes the way your neurotransmitters are working. Histamine actually has multiple functions in the body not just affecting the neurotransmitters. Just do a Google search on "Histamine Intolerance or Mass Cell Activation Disorder" and you will get lots of info. When I was doing my research many years back for Daniel I kept coming back to histamine being a problem and how it affects the neurotransmitters (especially how it affect dopamine which drives the tics). So I have known about this histamine issue for some time but now it has become even clearer for me. When Daniel was younger I would give him supplements him B6, magnesium taurate, glycine (which helps with the neurotransmitters), zinc (do not take on empty stomach), vitamin c. These things all really helped him but I really did not understand why back then. So to take this a step further about 3 years ago my OCD was getting bad enough I spent the money and went to the Mensah Medical (I live in Arizona but they come here periodically but they also do phone consultations. They are based in Illinois) and it was verified that I indeed have this histamine intolerance along with a copper overload. I have been on a compound the Mensah Medical had formulated for me to lower this histamine response and deal with the copper overload and I feel soooo much better I cannot tell you. It really made a difference. The Mensah, unfortunately is pretty expensive, but I learned a lot and I learned that these obsessive thoughts (that I would take to personally that it was a reflection of who I was as a person) is something I could now separate myself from and realize this is part of a situation where my body is processing things biologically incorrectly due to this histamine issue/copper issue and it was not a reflection of who I was as a person ( OCD obsessive thoughts always goes after what you value most in life which is the most frustrating part of OCD). I was at the point back, when I decided to go to the Mensah medical, where I was obsessing about obsessing if that makes sense. I am Christian and I had prayed for an answer for my OCD and through a series of events I got my answer and it was the Mensah medical. So fast forward to now and my daughter who is 15 has been getting depressed, has bad migraines, and complaining that her stomach hurts all the time. It dawned on me the other day about this histamine issue and I thought I wonder if this could be going on in her but in a different way (when I started researching all her symptoms are symptoms of histamine intolerance). So the last few days I started giving her supplements to control the histamine more in her body B6, Magnesium Taurate, Quercetin, B2, Zinc, and NAC and also stopped giving her foods that are high in histamine and guess what her stomach is feeling better, her mood has changed, and her headaches are better! That is just after a few days. My other son, Zach, he is 18 and he has pretty bad digestive issues and I think this is what is going on with him too. That is the interesting thing with this histamine intolerance is it can affect people in different ways. So to tie this together even more, this past year 4 of our family members, one being Daniel, decided to do " 23 and me" genetic testing. Well if you purchase the 23 and me kit that shows your health traits you can see a lot of genetic things that could influence your health. When you pull up the "23 and me results" they show you all kinds of DNA health traits. But there are some DNA things they do not show and I found a website called Genetic Lifehacks. The lady who started this Genetic Lifehacks has an article that is called "Histamine Intolerance and genetics check your 23andme raw data". What I did is I opened up Daniel's 23 and me results (again you had to have the health traits ordered not just the ancestry results to do this") and also had this webpage up at the same time (I toggled between the two). The lady who created this has a list of links you can click on, in this article related to how histamine can be genetically influencing you, and you can click back and forth and see what your genetics can tell you about how you process histamine in your body (again if you look at just the standard 23 and me results you will not find this. You have to go to this extra step to find this. To no surprise I found out that Daniel's body has issues with processing histamine. I looked at my mom's and my husbands results and I found the exact same thing. What it is looks like is my children inherited from both sides of our family genes that make histamine a big issue for our family. So they got hit from both sides of our family genetically with histamine issues! My husband has had tinnitus the past few years and I had come across an article a while back about how histamine can be a huge influence on tinnitus (ringing in the ear or other sounds). My husbands tinnitus came out of now where and it is both ears. For some people they get tinnitus because of loud sound exposure but this was not my husbands case and so we had a mystery on our hands as to why. Well what I found out is that antihistamines (like Claritin or Zyrtec) they do not stop the histamine from being made they just block it. As a matter of fact what I read is the longer you are on those kind of antihistamines the more histamine your body makes it is just being blocked but it can cause tinnitus in some people. My husband has been on antihistamines since his 20s (he is now 53). So we took him off those over the counter drugs and he started taking vitamin c, quercetin (which is like a natural antihistamine) , zinc, nac and guess what his tinnitus has gone down significantly. It is not completely gone (I think it is because he still eats a high histamine diet and also there are foods/beverages that block the enzymes that break down histamines (like coffee and he drinks a lot of it). The other thing I want to mention and I cannot stress this enough is research hidden names of MSG! My son and i both REALLY react with our nervous systems to MSG and it is not just Chinese food. It is in so many products. Daniels tics would be way worse even with a little amount of MSG. MSG is a frustrating thing because it has to do with the molecules being excitatory. It is hidden under different names because what these food manufactures do is they take a food, like yeast or soy, and they cook it for a long period of time to enhance the flavor. In the midst of that long cooking process the molecules change to an exictatory state. . So when you see a product like "autolyzed yeast" or "hydrolyzed soy protein" they have an excitatory property in it for someone who has nervous system conditions. Wihen Daniel's tics were really bad (about 10 years ago) I did a ton of research on "hidden names of MSG" and we started avoiding those food (this also includes artificial sweeteners). I also found that foods with high fructose syrup and food dyes (especially red) affected him and me too. One time I ate a lot of Red Vines and my anxiety levels were off the charts. So I know I put a lot of information out there. There are doctors who specialize in histamine disorders (some call it Mass Cell Activation Disorder) (like the Mensah Medical I went to). The 23 and me health traits with doing the link between that other website I told you about might give you a lot of clues too but just do some research on histamine. I came across an scientific article last night when I typed in histamine and tourettes and it came up with this very complicated article about how histamine can be the driving force behind Tourettes. Again this many be an answer for everyone by any means but it is definitely something worth looking into. I really hope this can help someone out there in their quest to find answers. What is so interesting to me is the other day I prayed and asked God to show me what was going on with my daughter (her migraines have been so bad) and this histamine issue is what came back up after I prayed. That is when I started doing my research for her and it brought this thing full circle again). God is so amazing to me!

I also wanted to also add some good news to this thread. I joined this forum in 2013 back when my son was 5. He is 16 now with no remaining symptoms or flares ups and has been this way for about 5 years. What worked for us was getting a proper diagnosis early (within 2 days of first episode) and fighting like heck to get a doctor to prescribe long term antibiotics. At first he was just given the standard course of antibiotics to fight the strep or ear infections he had. Symptoms would improve, but then come right back. After about 6 months of constant flare ups we ended up getting him on daily antibiotics for 2 years. To do this it took traveling out of state to a Pandas friendly doctor. After that, he went down to just a preventative does of antibiotics a couple times a week for a year or so. After that, we went down to just antibiotics in the winter months, then down to just when he had any illness or symptoms or a dental visit. Now he’s been completely off antibiotics and flare free for about 5 years. Puberty really seemed to shut things down for him Pandas wise. I strongly believe we would’ve had a different outcome if we didn’t catch it early and get him protected with long term antibiotics. His original symptoms were awful OCD and tics. He had to do weird things like tap his leg with his fist 3 times after doing anything like throwing a ball or spelling a word. His tics ranged from mild blinking to full upper body contortions. It was hard to watch and heartbreaking at times and we truly wondered if he’d ever return to normal. The reason I came here today (first log on in 5 years) was because my son opened up to us on vacation about his Pandas for the first time. It was hard to get him to talk about it when he was young. Last weekend he explained the OCD urges he used to have. Some he hid, like when he played basketball he had to dribble down the court an exact number of times during drills…. Other things he couldn’t hide, but the OCD was worse for him than even we could even notice. Anyway, every case is very different and I know how it feels to be in the midst of it all. Just wanted to give everyone here some hope that there is light at the end of the tunnel and the outcome can be a successful and well adjusted child. My son has a 3.8 GPA in High School and has several offers to play college baseball. He is a 3 sport athlete, class Vice President, and has a great friend group. Everything you could hope for a child. All I wanted 10 years ago was to be able to write the post I am writing right now. Wishing you all strength in your battles and the best of outcomes for your children!

Just another few data point for you all, my 8yr old experienced a sudden flare in her TS tics within about 8 hours of the pfizer covid vaccine #1 in November 2021 which lasted a few weeks. For me, when I got my Covid booster in November 2021, an old lumbar spine L4 nerve compression issue that I had (and had not acted up in the previous 8 months) flared within about the same timeframe (8hours) of receiving the booster. Not saying not to get the vaccines, but there is definitely an inflammation thing going on.

Ugh. Big hugs. I'm so sorry, I really feel you. I was where you are just last month, emailing and calling our doctor in tears asking if this is how our lives will be forever now. I still wake at all hours of the night with a hundred questions and thoughts etc, waiting for the night time wake ups of screaming etc. It feels neverending. PTSD for parents with PANS/PANDAS is SO real. The caregivers need help too. This is a lonely wild ride. If you're able to find a support group I know a lot of parents find just venting to people who understand therapeutic. Xxo

Funny I just got a notification from this response. I have not been on this forum in a very long time. I am so happy to report that I have a very healthy happy 16-year-old daughter who is no resemblance to the child that was in such turmoil. I will however say it has contributed to the person she is kind, compassionate and confident. I just went for an IEP meeting today which we did not even try Start one until eighth grade where things got worse before they got better but I have to say once over the hump of entering puberty things really started to balance out. She has not used one accommodation from her bare bones IEP she has good grades healthy social relationships and almost no residual OCD. I hope this gives hope to the parents that are going through this. My main advice and one of the hardest lessons I learned and she actually helped me see it was not turning her into something that needed to be fixed with all the desperation of trying to find her help she did feel like that for a time. Funny once I excepted exactly how she was whether it was going to last forever or not is when she started to get better. Sending love and good vibes to all of you and hope for a better day.

I am checking as the mom much farther down the road to be a help, if I can. My daughter was diagnosed in November 2012. This is our five year anniversary with this disease and there is HOPE for all of your kids. This is long but please read: With one of the most profound and difficult to treat cases to ever treat - my daughter is staring community college in the spring! You name the symptom and she has exhibited it - to name a few... complex tics, anorexia, bed wetting, mutism, depression, OCD, sleep disorders, a host of psychiatric symptoms (including schizoprhenic type symptoms including violence), and catatonia. She has also had every treatment - countless antibiotics, IVIVGs, rituximab, cell cept, prophylactic antibiotix, cytoxan, tociluzimab. We lost four years of life - she lost high school, and I shut down ever yaspect of life to take care of her. It has been lonely, frustrating, difficult, depressing...and yet hopeful, strengthening, funny, and finally TRIUMPHANT. I am repositing something a wrote in 2015 to give you all some encouragement and some general advice - especially to parents of children who are most severely affected. After I wrote this my daughter's trajectory slowed, but we found tociluzumab was the treatment that finally rounded out her recovery and though she still has some memory loss and is still making her way back academically. We know that she is going to have a NORMAL LIFE. Just a year ago, I thought she would always be with us, never have a job, never have friends...and now she is learning to drive and starting college classes (with a little support from special services) in a few weeks. Now she is running, swimming, laughing, talkative, and back to her old self - volunteering at a local library and worried about her hair and makeup (you have no idea what a big deal that is). Remember that every child presents differently and the part of the autoimmune system that is affected - and therefore the treatment that works - is different for each child. That said, PM me or ask me here and I will try to start checking in now that I too have my own life back. Hang in there....it will get better... Here is the 2015 post. My daughter has one of the most severe and drug-resistant cases of what falls under the big umbrella of a strep-induced autoimmune disorder that left her with severe neurological and significant joint involvement. For those who don't remember us, my daughter was an exceptional student and athlete, and world's happiest and easy child to raise - until the bottom fell out two years ago. In a matter of a days she suddenly and frighteningly developed Sydenham's chorea, tics, mutism, mood swings, joint pain and swelling. aversions, delusions, rage and host of other heart-breaking symptoms. It has been a tremendously challenging road and so as an unwilling seasoned veteran here is the advice I am giving to anyone who thinks their child has PANDAS, PANS, LYME or any other unusual/frustrating unnamed condition. 1. Do NOT waste time. The first time you see symptoms that do not clear up permanently after a round of antibiotics, get real help. Any of the symptoms I have described indicate your child has neurological inflammation. For the majority of kids, this could mean your child has cross-reacting antibodies, that are attacking your child's healthy tissues. For many kids this could involve brain, heart or joint problems so you absolutely need to rule out any potential damage, especially heart involvement (this was the one potential result our daughter had). The longer you go, the more damage that can result and the harder it will be to treat. This means: 2. Your child has a PHYSICAL disease with psychiatric symptoms resulting from inflammation so you need the right specialists. If your child has recurrent or ongoing flares after antibiotic treatment, and you are only seeing a psychiatrist or PANDAS doctor who has not done a full spectrum of physical diagnostics (MRI, heart ultrasound, tests for Lyme, allergies, inflammatory markers, titers, etc.) then ask your pediatrician for a pediatric neurologist referral. Remember this is PHYSICAL. I can't emphasize this enough: If you can, go see a neurologist and an immunologist. 3. It's not in a name, so don't get stuck with a label. I know we all want that relief/satisfaction of saying my child has "PANDAS" or some other condition, but that can predispose physicians to start treating before a real diagnosis and plan is put forth. For example, we ran off immediately to USF for PANDAS evaluation, at which they gave us some surveys, talked to us and then tossed us some antibiotics with a diagnosis of PANDAS. Not one physical diagnostic test was done and we were foolish to go along with that. In time, they would have ramped up to IVIG, etc....but I would never have known that my daughter could have had heart damage. For those wanting a name., honestly, ( For the math-minded I think we are talking about a spectrum of autoimmune diseases that could be plotted on a coordinate plane of X and symptoms on Y, to find that our kids are scattered all over the place) I think there are as many names for these diseases as there are kids. Just call it, "Insert your child's name here" disease. I am kidding - but also not. The many presentations of these diseases explain why they sound akin to others (like Lupus) and yet different when we talk to each other here. Also, never mention diagnosis to insurance providers. Many are looking for reasons to reject claims so let your doctors and insurance companies play the coding game. 4. Take meticulous notes regarding symptoms.Take pictures and video even at bad times. Trust me, you will forget. Look for subtle things like handwriting and appetite changes, sleeping changes, expression of unusual ideas, reduced speech. When first met our neurologist, I came in not with a disease name but a table of symptoms, date of onset, severity and frequency. I wanted them to diagnose without predisposition. 5. Don't worry about the bandaids - yet. I know a lot of us sweat everything from glutens, to certain amino acids to micronutrients. Until you rule out allergies, known genetic deficiencies....don't lie awake at night and wonder whether or not you are missing some esoteric piece of the puzzle. Feed your child well, make sure they are getting plenty of vitamin D (low is usually indicative of a chronic inflammatory process), and as many nutrients as they can from real food. You are a good parent, and while the little things will help along with a healthy lifestyle, there is no magic pill. Proper diagnostics will eliminate a lot of concern about allergies and root causes so you don't waste a fortune in time and money trying this and that. We are desperate and vulnerable so read everything with a critical eye. 6. Trust your gut and assert yourself. I went to FOUR doctors and had three ER visits with my daughter, shaking my head and respectfully telling them we were moving on when they told me she was probably just depressed. WRONG. (Tangents: I think our world, present and past is full of kids who are under-diagnosed for physical problems, and there is NO difference between mental health and health. It's just health). 7. Your child is not your child. There is no way that sweet baby of yours would ever do the things he/she is doing if he/she was healthy. Easier said than done - but do not take it personally. That said, reasonable consequences apply. If your child is having severe outbursts, you have to remind yourself: THIS IS THE DISEASE. Say it like a mantra if you have to. 8. Get healthy and fit. I have had to care for my daughter for two years 24/7. Most of you will not be like that. It's going to try your body, mind and spirit. It's going to be hard so you need to be battle prepared. At times, you are going to be scared, angry, tired, frustrated and lonely so you are going to need to be at your best like no other time in your life. Get sleep and don't worry if there are fingerprints on the appliances and the car needs vacuuming. My family has learned that no matter what, I am taking an hour a day to run or surf. 9. Get brave and tough.. People closest to you are going to hurt your feelings, and give you unwanted advice. Head them off at the pass and tell them that you are on top of all the research and protocols (you need to be), that this is going to be stressful, that you are so grateful for their support, but that the things you can't have them do include _______. For me, it was advice on how to parent...like when my daughter would be defiant, or when I chose to keep her out of the public eye when her tics and chorea were severe. Doing that up front will save all of you a lot of misunderstandings down the road. The "Loving but Uninformed" in your life will give you some bizarre advice at times; take it in the spirit in which they meant it. At the same time, get soft. For me, this meant learning to accept help from other people. I have always prided myself in being able to be self-reliant, being able to do it all, but with this spectrum of disease - forget it. I have learned that letting people help is not a sign of weakness, but an acceptance of kindness that can really make a difference. The people around you who really care want to help. Let them. 10. Slow down the clock. You aren't going to get it all done. At times you are going to be late to school. Sometimes you won't get to a place at all. You might even miss a major life event like a close friend's wedding, or as it is in my case...your chid might even miss a year of school. It will work out. 11. Read it all, get informed, stay on top of it...and then walk away at times. You cannot live and breathe this everyday without becoming obsessed in an unhealthy way. My daughter loathes it that I pick up on every tic, and my husband got tired of my talking through the study results in the third standard deviation for the sample size of 12 for the methylation of a certain gene expression (whoa, sexy AND romantic) when we crawled into bed at night. (The main reason I come and go from this website .) 12. Go out at a minimum of twice a month for the evening. The only rule: Thou shall not talk about thy child or thy child's disease. Also keep something out there a month or two away to look forward to...beach, trip to parents, buying a new sofa, camping trip. Finally, don't forget the healthy siblings and your SO. As much of a nut as I am about healthy eating, sometimes a little love and acknowledgement is as easy as a box of walnut brownies that can be mixed and tossed in the oven in two minutes...with a PostIt note alongside. After two years of IVIG, Cellcept, Rixtuximab and Cytoxan, we are finally knocking down the world's most persistent immune system and our daughter is slowly getting better. Chorea is gone, tics gone, OCD gone, moods better, tremors gone, ataxia gone, mutism gone, catatonia gone, sleep patterns good, aversions gone, eating well, engaging with the family, smiling, laughing and has some quality of life. Long story short: Treat physically and if a child like ours (who is probably one of a handful of the most profound expressions ever on this disease spectrum) can get fully back on the happy and healthy track - yours will too.

Hi, and welcome! My DS has a similar story to your DD's . . . OCD at age 6, started CBT and some ERP and it backed off for a while, OCD returned with a vengeance at age 8 and this time added low-dose SSRI to therapy which worked for several years, and then at age 12 became so dysfunctional no SSRI worked, wouldn't participate in therapy, etc. That's when we were finally able to get a PANDAs diagnosis and treatment (antibiotics). In our case, because his initial response to antibiotics was so positive, we were able to convince our doctor to continue to renew them, and in the end, he was on them for nearly 2 years, with improvements all along the way. We saw Dr. K. for a consultation and he recommended IVIG for us, also; Dr. K. believes that IVIG is the only true way to "reset" the immune system and stop the autoimmune onslaught behind the anxiety/OCD, and the NIMH (Dr. Swedo) has agreed with him. As you've probably seen here, there are those here who've had positive results with IVIG, and some who've not had palpable or lasting impacts, and I don't think anyone fully understands why the differences. In our case, our DS was responding so well to abx, we decided we'd hold off on IVIG until and unless his improvements ceased or we couldn't get them abx anymore. Not only did the IVIG seem like a more dramatic step, our DS didn't have any immune deficiencies, so we knew our insurance would not cover the treatment. A couple of things you noted I wanted to respond to, specifically: 1) as your DD has had breathing/sinus issues, have you ever had her sinus' "scoped"? There are a couple of families here on the forum who's sinus testing disclosed some cysts in the sinuses that were basically pockets of infection, more or less hanging out there and driving an unrelenting immune response which also reached the brain. Upon having the cysts removed, followed by a round of antibiotics, the child's behavior improved dramatically. We never went to the scoping for our DS, but he, too, had had sinus and breathing issues since he was 2 or 3. We think maybe the long course of abx was necessary in his case because of some infection hanging out in those sinuses that took a while to eliminate non-surgically, as his breathing and sinus issues improved along with his behavior symptoms, and he's not had any significant issues since PANDAs treatment. 2) You mention seeking Lyme testing. I would encourage you to address that before you decide upon IVIG as there have been some reports here by families that IVIG was ineffective or even problematic for them because their child had underlying Lyme and/or co-infections that they didn't know about before moving forward with IVIG. 3) While I do believe that you need to find appropriate medical treatment and perhaps SSRIs will not ever be a successful piece of your DD's health, my DS has continued to benefit from a low-dose SSRI for some occasional, lingering anxiety periods, and there have been other kids here for whom low-dose SSRI's have been helpful in conjunction with other tools. You might consider some genetic testing such as Genomind which focuses on genetic makeup and which psychiatric medications are likely to be effective or not based on one's genetics. And 3), you have a concern about "irreversible brain damage." As the parent of a kid who, like yours, went for many years unsuccessfully treated for an autoimmune response (strep was our culprit), I will tell you that I don't see any brain "damage," per se, but I do believe that my DS's "wiring" today was informed by his experiences all those years. He is now a healthy and happy 20-year-old, a scholarship student living away at college and growing mentally and emotionally on a daily basis. But he is still prone to some anxiety during stressful times, and his go-to response to that anxiety are some OCD behaviors. At this time, the anxiety and OCD are under control and so minor/sub-clinical that if you didn't know him extremely well, you'd have no idea. So, "damage"? I don't think so. But a part of who he is? Maybe. Perhaps he'll continue to mature and evolve past even these remaining behaviors as his mind and body health stay with him. Or he might always have these "tendencies" which, in addition to making him anxious at times, also make him conscientious, sensitive and empathetic toward others and their eccentricities. Hang in there, and all the best! All is NOT lost!

Our son is a couple months from 11 now. He started the famous eye blinking at 8 and did the body jerks (arms, legs and some head) a couple months later. They waxed and waned for about 4 months then stopped. He still has some facial tics, mostly some eye blinking, then nose twitching and eye brow furrowing but the jerks never came back. Even now his tics are so minor no one but me seems to notice. He goes for months with nothing, the last week he has had some eye brow furrowing, but he has been playing games on his Game Boy and this seems to be a problem. This has been a long journey for (mostly me) us. Since this started, we have now have him gluten free, clean foods, Kids Calm and Bonnies TS Control vitamins. This program seems to work and he is about %95 tic free. Even when he does get a tic, it is only one and they typically last for a week to 10 days then stop. They will start back if he has anything with wheat or food with either artificial stuff and or chocolate. I have found Natural Remedies Tic Tamer to really settle the tics down a lot when he does get them. I believe he is growing out of the tics, he seems to have the less often and less severe the his original ones. I absolutely hate these tics, and even today with his eye furrowing, made me feel very depressed and mad. I have come to realize this is my problem. He gets upset if he sees me upset about his tics, but I don't think they bother him that much. He would rather play his games and eat candy (sometimes) and knows they will give him tics. I want him to be a kid, so I don't want him to have bad memories of these precious years. I am so glad he is getting a little older so he knows what will give him tics now. A little background: No family history of tics or TS He is very bright, no other commorbid issues. Never had any vocal tics yet They bug me way more then him His tics have made me love him more then I ever thought I was capable of, and I pray that one day he is over them. Until then, I have learned to take one day at a time. I use to have those butterflies in my stomach just waiting for him to get off the school bus hoping they would be hardly noticeable. I travel a lot and still ask my wife every night "how are his tics?" Not sure why I decided to write this, just felt compelled and hoped I could offer some help. I feel like I went through the darkest days of my life since my father passed away 11 years ago and will leave you with this: He will get better and so will you. Lenny

@tiaratoledo you have some very helpful info being shared with you! My own son had a similar journey to yours-starting some tics around 4yo I can't post much now due to some work constraints, but just wanted to encourage you that you have much reason to be hopeful! My son is now in his mid 30s and living a full life. When I think back to the desperation I felt back when all this started, I can only be thankful that the natural pathway to helping him was fruitful! Here's just one of many threads here where good reports are shared

I remember being that mom who went through all the hard stuff of having to say "no!" to all the so called treats that are actually tic triggers for a child who is susceptible. But oh my! it was so worth it to not have my son go through waxing tics that can often last quite a while, for one night of worthless junk food. There are healthy alternatives that can replace what might not be good for them. Take it from someone who learned this the hard way many years ago.

Hi Chemar, Understood. We have already started maintaining a journal. Thanks for the info as well. Glad I found this forum, appreciate all the help am getting here.

Yes, get the RealTime mycotoxin test for mold. Also try giving liposomal glutathione prior to the test. My daughter had all zeros on her first test because she could not detox the mold at all. After the glutathione the numbers went way up! Make sure to check for Lyme and other coinfections (Igenex) and especially bartonella (Galaxy Diagnostics for this coinfection). Also check IGg levels to be sure she can fight whatever she has. There is a lot more info out there now, so read up! Three great books: Demystifying PANS/PANDAS by Dr. O'Hara, What to Do When Your Brain Gets Stuck: A Kid's Guide to Overcoming OCD, TOXIC by Dr. Nathan. All on Amazon. Two great websites: Aspire.care and Pandas Physicians Network: pandasppn.org

Man, some of the posts here really bring back memories of sleepless nights. What I have learned so far on this journey is that I think there's a heck of a lot more individuals with motor and vocal tics than the medical profession wants to believe. There seems to be a vast number of cases out there that don't elevate to the level of Coprolalia; yet that is what's noticed and publicized. I also feel that the "moderate" cases are poorly understood (poorly funded research) and is probably why the medical profession seems completely blind to any other solutions than medication. Moreover, i dont see a whole lot of doctors with enough depth of knowledge to wholistically put it all together. All i know is that my daughter progressively got worse up until age 8; at which time we became aggressive in diet and environmental control, and now at age 10 she is completely tic free. Like zilch since July 2023 except maybe once when she was sick. Before we did anything she was ticcing upwards of 40 times per minute, had OCD tendencies, and had an aversion to loud noise. I find it really interesting that she can tolerate loud noise now.

Hi KSandy It certainly sounds like you are following a good track! I don't have enough personal knowledge to comment on specifics for you, but I do know my son (dx TS with likely PANS component) showed tremendous improvement with cleaning out Candida albicans! We used capsules by NOW called Candida Support (used to be called Candida Clear) and had good results. As Candida is fungal (also sometimes called "Yeast overgrowth") I know some of the prescribed antifungal liquids have had mixed reviews. My son's OCD always ramped up when his GIT wasn't happy. He still uses plain natural organic kefir as his probiotic, as he did not respond well to those probiotic supplements. He was subsequently diagnoses with Crohn's disease, which explained some of the inflammatory gut issues. The Integrative doctor started him on NOW Boswellia + Curcumin which he still takes and finds beneficial to both GIT as well as neurological impacts. We know the brain-gut connection all too well, so always advocate for the treatments that aim toward healing both. We found regular medicine just doesn't address that, and frequently prescribed treatments just upset the balance and result in new issues - at least that was our experience. So kudos to you for following a holistic approach. I do hope your daughter will heal well.

@MLee We initially started Magnesium alone, based on Bonnie Grimaldi's research on TS tic reduction with Mag. The effect was very quick for my son with the Mag supplement at 400mg/day along with nightly Epsom Salts baths. It is generally recommended to be sure that there is an intake of Calcium (food or supp) at twice the amount of the Mag dose. My son was 10yo at the time, and his doctor said to use the adult doseage of megnesium. We added the B6 later based on the physician's recommendation, and it definitely helped with many aspects of Tourette Syndrome 400mg is still the suggested adult supplemental magnesium dose as far as I know.

I don’t post much but am a long time member. I first posted in 2010 over a year after my daughter recovered from a severe 1 year long episode of PANDAS anorexia. That post is still available if you do a search. She was 10 and had overnight sudden onset severe anorexia /OCD. She had high aso titers for almost a year. There were very few people who could help us at the time so it took 3 months to even figure out the issue. She eventually returned to normal almost as suddenly as it came on. She has been great ever since. I posted another update in 2016 when she was starting college. She had no further PANDAS related issues until this year. She rarely was sick (probably because of her over reactive immune system) but we always continued to have her tested for strep even with a slight sore throat. She graduated from college in May of 2020. She was accepted to medical school later in 2020 and started in July of this year (2021). Her school was very pushy with the COVID vaccine which we did not want her to get but she got it anyway because she felt she was going to be prevented from fully participating in everything without the vaccine. I am not anti vax at all. We did delay her 12 y/o vaccines until she was 15 and she got them all separately. I just felt like the COVID vaccine risk vs benefit for her did not warrant it at all. Nevertheless, she received the vaccine in early June. When she started school in July she was loving school! She had met many new friends and was doing great. Fast forward to the last weekend of August, I received a call at 3 am from my daughter. She said for the last 24 hours she has had very severe anxiety and could not sleep at all. She said it started in the middle of the night before so she had not slept in almost 2 days. Things were getting really bad and we had to fly her home. She proceeded to be unable to sleep as well as unable to study. She said she was having trouble concentrating on even simple usually easy tasks. She was completely non functional as a medical student and after a few days took a short term leave from school. Before we even flew her home she had seen a psychiatrist who immediately put her on buspirone and gave her something to help her sleep. She was able to get small blocks of sleep at least but the anxiety was unchanged. She was able to eat but not eating very well. My normally super independent grown daughter was unable to make any decision and she was also frequently coming in my room at night and sleeping on the floor as if she were a child. She was a completely different person and we felt it had to be a PANDAS type situation. Fortunately a lot has changed in 13 years and we were able to get her in with an autoimmune neurology specialist. She typically saw pediatric patients but agreed to see my daughter due to her past history and her current situation. We did extensive blood work. This time the strep was negative. She had a positive monospot test (no recent illnesses) but her Epstein Barr numbers came back negative. She tested positive for both IgG and IgM antibodies for micoplasma (again no recollection of feeling poorly). She was given a course of antibiotics. We weren’t seeing any changes for the better. The buspirone was not seeming to help her anxiety/OCD at all. She said the only difference was she was not experiencing the physical symptoms she was the first week or so like the racing heart rate. The difficult part of this happening to your grown child is that they get to make their medical decisions. She was convinced that this was not autoimmune related and was annoyed I was asking the doctor about the vaccine. She kept blaming herself for everything. It was very hard to watch my typically positive energetic confident daughter turn into a self doubting mess. The doctor wanted to put her on a 5 week course of steroids but she was pushing back saying it would make her gain weight. She was not getting better and started getting pretty depressed. About 8 weeks into this (and 9 pounds lighter) with no improvement she made the difficult decision to take an extended leave from school and she agreed to start the steroid. At the same time, her psychiatrist put her on a low dose antidepressant. Literally a day after starting the steroid I noticed some changes in her mood and she seemed to be doing a little better. She was sleeping better too. She still was definitely having struggles but there was a definite improvement. Some time during about the third week of the steroid she became much better…almost to baseline. It has now been almost another 3 weeks and I feel her demeanor is mostly back to her normal happy self. She is eating well and has put back on a few needed pounds). This was, however, a big blow to her confidence as a medical student. She still believes it might have just been her being stressed but her dad and I know better. She will continue with counseling that we started to help her get her confidence back so she can hopefully return to school as the same caliber student they admitted. We still do not know for sure what caused this to happen after so long. My guess is that it was either the micoplasma or the COVID vaccine or perhaps both. Something turned her monospot positive too but it was not mono. We will be seeing her doctor in another couple of weeks and hopefully get blood work done again. I can tell you one thing is for sure. As they say…”out of abundance of caution” she will not be getting any COVID boosters. I just wanted to reiterate that I’m not antivax. I think the COVID vaccine has saved many lives. I just think that there is a possibility that it could play some role in autoimmunity. We just don’t know the answer yet. Until then everyone has to do that they think is best for their own situation. I just wanted to add my daughter’s story as just another case history.

Hi @madimi - there must be something in the air! After a good chunk of time with mild tics, not gone, but really not noticeable, my daughter over the last 2 weeks has seen a big increase in tics and new ones. She has been doing an eye wink/lip stretch for a while but would happen maybe 1-3 times an hour, now it's literally every 2-5 seconds. She's also started to scrunch up her stomach/slight hunching over, incessant scratching all over her body, throat clear/grunt type sound every 5 seconds. I've had two meltdowns privately over this. Frankly every time I see her do this (which is often), it feels like a knife is stabbing my heart. I do hide all my emotions from her, and it still continues not to bother her. In fact, today she went to the park to play, ran into 5 other classmates and they all ended up in our backyard playing and it made me so happy to see. I hold onto the good, and have started my own gratitude journal to write down 1-3 things I'm grateful for every day to get me through this. I've actually started her doing it as well, every night before bed she writes down 1 thing she's grateful for. In addition to all of this, my older daughter (12) who has had vocal tics on and off for years (no motor), developed an eye roll in January. It went away after 3 weeks and two days ago, started up again. She told me today, friends are starting to ask at school what is wrong with her eyes. We've had discussions about her vocal tics, as she also has a very frequent throat clearing tic, so she knows what tics are, but I'm certain she doesn't talk about it with her friends. She has ADHD and I'm also starting to see OCD tendencies in her. Like I said, my heart hurts, I keep trying to see the good, remind myself this increase in activity will hopefully pass soon and continue to be present for my kids. But it's so challenging. I worry about their future and their happiness. You are not alone in this!

Get any help you can. I understand you fully and we've been in the exact situation multiple times. I can not talk for your child but I know my daughter can catch me easily if I watch her tics and this makes her nervous and also negatively effects the tic frequency. I still get caught time to time, but I thought myself to make her comfortable during the peaks as it's the not the easiest but shortest way out for both of us. I think stress certainly has an effect. Under negative stress I see the tics rise quickly. I try to apply positive stress as much as possible, like a physical competition , memory games, any thing that would direct her concentration to somewhere else. Believe it or not, every 30 sec is not really a high frequency. I had so much worse on some tics. Just today, she started blinking both eyes same time (not like blinking but like closing and opening) , we had this tic couple of times before. Sometimes today it got really frequent. A few minutes after I told her, it might be better not to use iPad as her eyes look tired, she came and told me, I don't want to do it (close eyes) but I also want to ... trying to explain herself. I said, it's quite ok and to do whichever she feels better, closing or not closing and added it will go away in a few days maximum anyway (that's some good will) Back to my first sentence, get any help you can, if you are not well, you can not help.

I wanted to add that I was listening to the Dr. Robert Malone podcast regarding the vaccine. At about 1 hour 39 minutes he talks about the spike proteins crossing the blood brain barrier which can cause inflammation and other problems. It’s interesting since this is what the antibodies do in PANDAS…cross the BBB and cause inflammation. I can’t help but think there is a similarity in the two. I guess in time maybe we will know.

Thank you for sharing your story. 🙏🏻

Hello fellow PANS/ PANDAS parents. Some old-time folks may recognize my name. Others are likely unaware of the struggles my family has endured for the last decade. I found this forum in 2010 after a H1N1 hit our family in the fall of 2009 and my son was hit with yet another PANS exacerbation. He was 12 years old at the time and had struggled with chronic sinusitis and Pans for much of his life, though the preceding 5 years had been relatively quiet as a result of a 2007 tonsillectomy. The H1N1 set off a major immune response that led us to Dr. B in CT who found a large muscle in his ethmoid sinus and immune deficiency. After emergency surgery, we started him on HD IVIG, which initially triggered a severe PANS exacerbation. After several months of repeated HD IVIG, he showed signs of bartonella infection and began treatment for that. Around 2015 he seemed to be at a standstill- requiring rifampin and doxy and HD IVIG every 8 weeks. He was able to attend school part time, eventually finish an alternative HS with a local degree, and take some part time classes at a community college with grades in theC-B range. Vocational rehab worked with us, but did not want to invest money in tutoring or books for college as he scored so very low in math they did not think there was ANY college degree he could ever achieve. In 2017 he started seeing a local immunologist who does work with mitochondrial disorder, who did some bloodwork followed by a muscle biopsy, which showed mito dysfunction. He followed this with a genetic blood test which showed a genetic mutation leading to mitochondrial structural problems. He started on a mitochondrial cocktail and was soon able to go to community college full time. His grades went from Bs to As and he was inducted into the honor society. He transferred to a 4- year college last year as a dual major in philosophy and computer information systems. He loves computer coding. He has a 4.0 average. He has friends, work, girlfriend. He is a nice guy. He is still on doxy and the infectious disease doc we work with cannot explain why, but thinks it is gut-related. We are still searching to get him off doxy. He has not had IVIG since January, 2018, and he is fine without it. I am not telling you this to brag. I am telling you this because 5 years ago I thought he would never be able to live independently. I am also not telling you this to say the your child has a mito disorder. I have been on these facebook pages and forums long enough to know that there are only two things our kids have in common: 1. Unexplained psychiatric symptoms linked to illness; 2. Parents that recognize #1. I know you are the fighter, warrior parent. I know you know your child best. I believe you will find what works best for your child. I don’t care if that is psychiatric meds, mito meds, a gluten free diet, or mold remediation. I believe you will find it and once you do you will hang on to it. I wish I could wave a magic wand and just relieve everyone of their worries. I know how desperate I was from 2010- 2018, I know how many times I logged into this forum and hung on every word I read, and I know how much positive stories helped. I hope this helps you in your journey and I wish you all the best.

Oh do I understand the stuck and pissed, and $$$ stressed and tired. If you want to talk over what you've already done and seen, and brainstorm, give me a call. I'm not an environmental hygienist, but I've unfortunately dealt with hidden sources. And as the CIH I work with repeatedly told me, "an outlet or hairline crack in the drywall is like a highway" and the killer thing is that "every time you change air pressure, say by closing a door, it forces mold fragments & mycotoxins out through those gaps". So if I can help with the detective work, I will. Where are you located? Lucy PS. I'm a night owl on PST, in the SF Bay Area. Send a DM.

Hope36, I am so glad you saw our post. We started noticing certain foods would make his tics more noticeable & more out of control. We started removing all processed meats, especially hotdogs & brawts. We found these always made his tics flare up. We also cut out pizza, except for gluten free. We don’t believe he has a gluten allergy. However, most gluten free foods are also more natural with no preservatives & additives, which we believe affect our son. We also never eat Chinese food because of the MSG in it. It makes his tics awful. I buy only breads that state no high fructose corn syrup & it doesn’t seem to bother our son. I buy Healthy Life whole wheat bread at Walmart & also Sara Lee brand has some bread that is labeled no high fructose corn syrup. If we buy sandwich meat, turkey or ham, I buy Oscar Mayer Natural. It will show no artificial ingredients & no nitrates, which are additives to preserve longer. Our son likes peanut butter & Jelly so he eats that at school & we send lightly salted Pringles & organic granola bars. We also send organic annie’s Chocolate chip cookies a few days a week. I have also found that Kraft Mac & cheese does not affect him since they’ve removed the preservatives, etc. The Kraft Mac n cheese bowls are easy too. We mainly stick to all fresh fruits & vegetables & we cook at home primarily so we know what is in his food. I know it’s overwhelming, but over time it won’t be. Mainly stick to fresh fruits & veggies. Also we use Young Living oils because they are more pure. You should be able to find a local contact who may sell them in your area. I hope this helps & we are always here! Hugs

Hello, This is my first time on here. Chris is my husband & I wanted to give an update on our son. He is now 9 years old & I'm happy to say his tics are now under control, with only occasional motor tics. We are so thankful for sites like this. Otherwise we would have never known to restrict his diet & try essential oils. I have several friends who have reached out after my recent post on social media & they are also seeing positive results with changing diet & applying essential oils. I spend much more time at the grocery store checking labels on anything that is processed foods. I buy mostly fresh fruits, vegetables & all natural meats. We can always tell if our son eats something that is not within his diet. His tics are almost instantly much more visible & it takes a few days to get him back to normal. We are so thankful everyday to have our happy go lucky son back. We know that he may always have tics, but it’s so reassuring to know that it is controllable with something as simple as diet changes & his daily half tablet of Guanfacine. I have said from the beginning I will always make sure he has a normal, happy life, no matter what. It is possible. My son is a reminder everyday.

Our daughter was treated with plasmapheresis in 2017. She has pandas/Pans but not Lyme (we think?). She was typically treated adequately with antibiotics but for whatever reason we couldn’t get that one flare under control with abx or prednisone, so we went looking for ivig. .. The immunologist we found had more success in his patients with plasmapheresis than ivig. Our daughter’s symptoms were severe at this point. It is also often easier to get insurance coverage for plasmapheresis than ivig, which is curious to me. For all these reasons, we went with plasmapheresis, and would do it again in a heartbeat. I cannot express how life-changing it was. (Two years out we may be needing it again, and if we do, I will be nothing but optimistic going into it.) We are in VA so I don’t think I can help as far as who can treat near you. However, don’t take the “it’s impossible to get in CA” and just give up.... start making phone calls. Call area hospitals and ask if they do plasmapheresis at ALL, regardless of reason. Ask which immunologists order it. Work backwards from there. You are at an advantage because of your son’s age, as the issue is often finding an apheresis unit with the capability of treating a peds patient. Your son is not a peds patient so you already don’t have that barrier! I do not have experience with Lyme related to plasmapheresis. Also don’t take the “insurance won’t cover” without checking your plan on your own. You can call and ask if the cpt code is covered (I don’t have it in front of me but could find it) and whether it needs preauth. Don’t give up. Hope I helped or at least gave hope. Good luck.

Donald Raden, MD is an Integrative Psychiatrist in Highwood, IL. His practice is called the Raden Wellness Center. My son (age 13) has been under Dr. Raden’s care for 1 year. He saved my son’s life. He treats many young adults with PANDAS. My son’s case was severe.

I contacted PANDAS Network right after the episode. This morning I received this response from Diana Pohlman: "We heard from lots of parents and 600 innundated the producers email. We are following up with an email to the producers as well. Happily 20-20 is doing a great story on REAL TREATMENT mid May and that will be on ABC." NBC is the producer for Chicago Med.

Oh my, I'm so sorry! Your son's description of how he's feeling reminds me vividly of Susannah Cahalan's description of her own auto-immune illness in "Brain on Fire." She, too, experienced paranoia and some other symptoms that many traditional doctors would all too readily dismiss as solely psychiatric manifestations, dispensing with the underlying physical issues. If your son is a danger to himself or to others, you will need to get him immediate help; if that means the hospital, then it's the hospital. Unfortunately, I think it likely that you should expect to be met with some psychiatric interventions -- tranquilizers, at a minimum -- if he presents as agitated or full-on delusional at admissions. You may have reached a crossroads where the abx are insufficient for meeting his illness adequately. Can you get a PANDAS/PANS specialist on board? I know a number of families here have allowed short-term and periodic use of anti-psychotics or tranquilizers (Valium, Seroquel, etc.), just to get there kids calm enough to travel for help, and/or to give the kid and the whole family a break and some sleep. I'm not advocating that, necessarily, but you have to do what works in order to give your kid their best chance at a route which leads to the best healing. Hang in there. Hopefully, someone else will chime in with more direct experience that may resonate with your situation.

Kelly -- I suspect it is a combination of both...an unfortunate marriage of a genetic susceptibility and the PANDAS-related inflammatory response. And it may not be a "flare" so much as a continuation of the original PANDAs/PANS immune onslaught; many of us find that a "typical" or shorter course of antibiotics is insufficient for fully addressing our kids' conditions, so a two-week course may not have fully addressed the "animal" that is PANDAS/PANs. Our DS, too, had some mild sensory issues prior to a the full-blown PANDAs episode that sent us into a tailspin. Once the PANDAs hit full force, we had him professionally evaluated and as with most of his behavior set, the results came back "borderline." During PANDAs, he was alternately identified as "borderline" a number of things: OCD, Asperger's, PDD-NOS, Sensory Processing Disorder. You name it, the poor kid, at one point in time or another, wore a label for it. What I can tell you is that, with the conclusion of effective PANDAs treatment, the sensory and social issues resolved 100%. One doctor even took steps to revise his file to remove the former ASD notation he'd made there. I would say, however, that I don't think you are wasting any effort in giving her access to OT; I think it will only help her as she heals and enforce positive behaviors and coping strategies that will stand her in good stead going forward. All the best!

My DS is now 17 and applying to colleges, never thought we'd see that day. Like BOBH mentioned my DS reacted to Vit D and O3's like we had given him LSD. Super scary. But he was a paradoxical reactor as so many PANS kids are. He also was super sensi to Probiotics but I vetted the ones he took like no-tomorrow and keep copious notes on how he reacted to everything. He's the full meal deal - PANDAS Plus who never stopped flaring once he started for almost 4 years, missed almost 4 full years of any type of school he was so impacted, and was also diagnosed with Lyme and POTS. I think he was on Abx for over 4 years straight. Game changers for him were getting the Strep out (took over 6 months and a tonsillectomy) at the beginning of his illness, then 2 years later him getting Plasmapheresis (TY Dr. L), and now for the past year HBOT has been UNBELIEVABLE for Lyme symptoms, so we now have one of our own. Look into hyperbaric oxygen therapy for Lyme... My boy was almost 12 when he crashed, IVIg didn't help at all, Abx kept him from getting Strep again but didn't help him stop flaring, ibuprofen took the teeny tiniest edge off him and he took 3 caps every 4 hours for 12-18 months if not longer. PEX was huge for us, although he got worse before better, but we got the suicidal depression and schizophrenic crazy gone and our boys mind back as a result of it. He's 17 now talking about perusing an engineering degree. Dec 11th as the 6th year anniversary of his crash. It's like a bad dream we are waking up from finally, thank gosh. I sincerely hope your boy gets well soon.

The obvious approach is to say exactly what you wrote: that you believe your son may be having neurological inflammation because of an autoimmune response based on a list of symptoms that you have documented. Then see what tests he suggests and allow him to make the diagnosis. Remember that there is an art and science to using the terminology that will ensure that your child gets the treatment needed that will also be covered by insurance. I was careful to allow each doctor to use "PANDAS" before I did. If they did not, then I didn't either. After all, a bruise is also called a contusion ;-).

I agree that everyone is different. So much depends on how old a person is, how severe, how long it's been untreated, and what kind of treatment they get. And sometimes, there seems to be no rhyme or reason to how fast or slow one person recovers. In my experience, I was untreated for eight years, had my first IVIG at 19, and after another IVIG and a tonsillectomy, I'd say I made a full recovery over a year later. I've since relapsed twice, but that's because I caught Lyme disease, which complicates things a great deal. From what I've observed in my own journey, it's very hard to give an accurate percentage of recovery, or to figure out when I've gotten all the way back to myself. I don't know if I've ever been 100% symptom-free since I became ill eleven years ago. I've stopped trying to assign a number to where I am in recovery, and I just gauge whether or not I'm able to live my life as I wish. Ultimately, I think that's the best a lot of us can do. For me, there's never been a day or even a month when I've suddenly realized everything was back to how it was before. It usually seems to be a painfully slow process where I shed symptoms and regain my "self" so slowly that I might not even realize it's happening. It's easy to over-analyze ever day, every tic, and every little compulsion, but the overall trajectory is what's most important. There will be ups and downs and flares for pretty much everyone, but hopefully, the underlying trend is towards the positive. At my age and given how long this went untreated, it's possible I'll always have some minor symptoms. But even if this is so, thanks to treatment, PANS hasn't stopped me from doing anything I've wanted to accomplish in my life. So hang in there! You might be in this for the long haul, and there may be a lot of ups and downs, but yes, your daughter can and will get better with the right treatment.

Our DS (age 10) is now so much better and recently went back to school for the first time in nearly a year. I look back at how surreally awful things were a year ago and wanted to summarize for this forum how we got to where we are today. I can only hope this might help others in the doldrums of this thing. It is a dark place. Pardon the long post, but I want to share as many details as possible. I first set out our son’s symptoms/some observations about diagnosis, then detail what our treatment consisted of (son is 90% back!) Background of Symptoms/Onset What I now know to be classic PANDAS symptoms started up when our son had just turned 9 (following a 103.8 fever, we don’t know what the virus/bacteria was bc our urgent care only tested for influenza which was negative). He had no prior health issues and was a great student/very social/sporty etc. All around super easy kid. First symptoms were withdrawing from normal activities and wanting to be on iPad all the time, strong separation anxiety, and restlessness/fidgetiness. Soon, he began to have major panic attacks, often several in a day, dilated pupils, look of terror on his face, frequent urination, extreme irritability and oppositionality, weird emotional regression and inappropriate smiling when something bad/upsetting happening, handwriting issues, refusal to go to school (I now fully understand why), inability to fall asleep (but then sleeping 12 hrs), extreme restlessness/moving around (doing summersaults on bed, standing on head while on sofa etc, but not a pure “tic”), major light and noise sensitivity, complaints of blurry vision, and major joint pain. We finally dug out of him that he had intrusive images. This was like a game of whack a mole. Entire family a wreck. Pscyhologist/Psychiatrist said he had severe anxiety and possibly late-onset ADHD (and that these other symptoms were just his way of expressing his anxiety as pain etc), and so we chased down the anxiety/psychological symptoms with cog behav’l therapy and everything only got worse. Tried Zoloft, did nothing other than major side effects/whole body hurt. Footnote Re When This All Started While it is very clear that his big fever/infection set off this major flare, we realize now that our son probably had smaller flares in previous years. They were minor enough and he was a high functioning kid, such that he “hid” them well or managed around them etc. The main symptoms of these earlier, smaller flares were separation anxiety, complaints of scary images (we assumed from commercials for horror movies etc but now think they were the intrusive images) and frequency of urination (especially following strep 2 years prior to this flare). The thing that was always odd to us was that he was such an outgoing, easy, great student etc, that we never understood the separation anxiety bc it didn’t match his personality profile. Our PANDAS doctors have explained that this illness can creep up with each strep exposure (or later, other viruses/bacteria) until you get an illness that “puts the straw on the camel’s/child’s back” and the immune system gets over some sort of tipping point. I think some of what is out there in the literature about PANDAS makes too much of the suddenness of onset. I think the final, full blown, horrible flare that leads you to treatment can come on suddenly, but a child might have been “ramping up” over years, with each infection getting them higher on the rung of a saw tooth formation. This is important bc I think it very often delays proper diagnosis (see also observations below relating to difficultly in diagnosing kids who don’t get tics or ritual based OCD). Other Observations in Diagnosing PANDAS Three other observations that might help other parents, especially those in the diagnosis phase. This is based purely on personal experience (I am no doctor), observations from reading the literature, and input from several other families I have come to know with PANDAS. I think all of us lose sleep at night knowing that there are children out there who are not getting properly diagnosed, and meanwhile recovery gets more complicated the longer diagnosis is delayed (and worse, usually there are incorrect diagnoses along the way…) 1) 1. OCD, which is one of the primary diagnostics for PANDAS, can take many different forms. I thought that OCD would be extremely obvious, like hand-washing or other rituals that are repetitive. I came to learn only after months of psychologist apptmts and talking with my son that he was having what is called “pure O” where there are no rituals, but rather intrusive thoughts or images. This OCD is far more “invisible” and further, the children often don’t want to talk about it bc they are embarrassed about what their intrusive images or thoughts are about if they are taboo subjects. When children have PANDAS with tics or the type of OCD with rituals, they might get diagnosed more quickly because tics and rituals are (painfully) visible. I remember in one of my many pre-diagnosis 1am google searches coming across PANDAS and thinking it sounded like a possibility, but since we didn’t have “OCD” or tics that we didn’t have PANDAS (though I also now wonder if the fidgety/restlessness is sort of the same type of brain response to swelling as tics) 2 2. Our expert PANDAS doctors explained to us that with PANS/PANDAS there seem to be two groups of patients: a) those for whom antibiotics alone will help – these are likely children who are diagnosed relatively early on (my own suspicion is that these kids often have tics, which are obvious, or perhaps are even reacting to a current strep infection), and those whose immune systems have gotten so whacky from years worth of miss-firing autoantibodies that they will need second line treatments to get the brain swelling down and to tamp down the immune system’s hyperactivity (steroids and “steroid extenders” like plaqenil/cellcept/ritux are key here etc). I wish I had understood this a little more earlier on because I initially read so much about children who were basically completely cured from simply taking antibiotics (perhaps in combo with Naproxen). But when your child takes antibiotics and it doesn’t help, this can be very confusing/disheartening and can perhaps even lead a parent/doctor to think it is not PANDAS despite all other signs pointing there. 3) 3) Regarding other co-infections…. In our son’s case, his diagnosis was relatively straightforward once we got to the experts. He had no pre-existing health or behavioral challenges etc., and he tested negative on the usual set of co-infections (e.g. lyme). That said (and again I am no doctor, just sharing info I have gotten from our drs and from reading), it seems like there are quite a number of of bacteria and viruses that can lead to inflammation of the brain with the same litany of awful symptoms (e.g. the worst-off Lyme patients seem to me to be identical to /are PANS patients). Other posts on this forum have far more info about these other bacteria and viruses. It is honestly rather overwhelming when in the diagnosis phase of this. The main point I want to share is that what I have garnered from our doctors: for any sort of post infections autoimmune brain inflammation is suspected, you will want to follow a protocol of i) treating the infection if it is ongoing and since they can be hard to find, you typically treat as though it is active (generally this is done w antibiotics – though getting the right one matters), ii) bringing down the brain swelling (often with steroid type drugs if it doesn’t happen on abx alone, which is very often the case, or at a minimum, with Naproxen), and iii) preventing future infections and hyperactive autoimmune responses (often long term abx plus a steroid extender of whatever potency deemed necessary). In some cases patients aren’t given ii, but those seem to me to be early treatment cases (or cases where drs haven’t realized there is brain swelling/or have health conditions preventing use of steriods). Some people will try homeopathic options or diet changes for i or iii, but this may or may not be strong enough to get the immune system to behave properly (e.g. there are children who don’t make enough vit B12 (MTHFR mutation etc) where a lot can be gained with B12 supplements or who are too low on vit D etc). What We Did Like many of you, we did all the cog behav’l therapy and SSRi stuff. This was of zero help whatsoever. I remember trying to get him to attend school: I would go into the classroom and sit in the corner and that is when I realized he literally could not do the work. I saw his handwriting – it was like a 4 year old version of himself. He was slipping away even with cognitive abilities. We realized at this point something very awful was happening and started to fear a brain tumor (though never had any seizures so we were put off by most drs on this). We kept going to our pediatrician who has known him since birth. She was surprised by all this since he was a “very straightforward” kid prior, and thankfully she ordered blood work including strep titer levels. Found elevated strep titer level (435 on a test where 300 was max of normal) but no active strep or mycoplasma infections, low Vit D, and elevated monocyte levels. She said could be this thing called PANDAS and put him on Keflex. Didn’t help, he got worse every week. Did one oral steroid 5 day course (60mg/day) and we saw a glimmer of improvement. Then, thankfully we got in with experts at Stanford. We owe them our child’s life (treatment details below). The Stanford PANDAS experts did an extremely thorough exam (done regularly throughout treatment) and even more bloodwork (negative on Lyme and various other coinfections, had elevated levels in 3 out of 4 on Cunningham panel, and again high monocyte, low vit D and high titers). He had choriform movements when his hands were stretched out (apparently you need to look for even slight movements/it is rarely what you see on YouTube videos as that gets diagnosed sooner these days), and movements with his tongue. Also could see it in the “milkmaid test.” Very distressing to watch. Joint pain all over the place. Skin rash indications of some sort (I never really followed that part of exax). They also did handwriting evaluation - also affected. They were very certain he had PANDAS/it was a clear case. Ordered MRI to rule out brain tumor and vasculitis. Meanwhile he was put on Augmentin and 880mg Naproxen/day (kept on Zoloft mainly so as not to have more than one medication change). No improvement. Took weeks to get in for MRI (huge overload at hospital due to need for anesthesia). Immediately following MRI/ruling out of brain tumor or vasculitis, we commenced a 3 day high dose Solumedrol infusion. (Major issues getting him to hospital for this – massive fear of needles/hospitals etc, had to have police escort and used valium - barely helped). But thank goodness we got him there, we could tell he was better even by the third day of infusions. (Note he had allergic reaction to the HD Solumedrol, but we found that if we kept him on Benadryl before, during, and for 2 days after, he was fine, also cut out Naproxen and used Tylenol instead for that time period). By 7 days post infusion, we could see significant improvement. That improvement went like this: very up and down, 2 steps forward, 1 step back, the first symptoms to be relieved were the extreme oppositionality and some of the crazy restlessness/fidgeting, he was maybe 30% better overall). Overall, through below-detailed treatments, his symptoms disappated in the reverse order in which they arrived. Weird, but I guess makes some sense based on the brain swelling and then de-swelling. After the first HD Solumedrol 3 day infusion, we did the following: - As soon as we could tell the Solumedrol was helping, we started him on Plaqenil (RH drug used for long time, goal is for it to help calm immune system generally and also “hold” the effects of the steroids). - Continued on antibiotics, but we switched to Amoxycillin which is supposed to be 100% strep effective (eventually to a phrophelactic level dose) - Stayed on the 880mg/day Naproxen and existing Zoloft - 4 weeks after first set of infusions, did another 3 day HD Solumedrol infusion - Then, for the next 4 months, we did 1day HD Solumedrol infusions, spaced out by 4 weeks. (fortunately we did not see “slippage” between infusions, which I think is why we were only put on Plaquenil instead of one of the other, stronger steroid extenders like Cellcept or Rituximab, which are also being used in combo with the HD Sol). The 1 day infusions were far more tolerable (better with sleep and not feeling awful). Our son improved with each infusion by day 7, though there were side effects (weight gain, cognitive fog, a different kind of inability to fall asleep – we used Benadryl every night); these side effects tended to subside the further out we got from every infusion so week 3 and 4 always the best. - We never did IVIG. We were told that it is currently only working in 20% of patients our drs were treating – perhaps b/c too many in the donor pool have PANDAS or b/c of particular strain of strep around here. I also see that very often IVIG is prescribed together with HD Sol, so maybe the latter is the more key med. (Also, our insurance wouldn’t have covered IVIG, at least without a fight – good news is HD Sol is very common for autoimmune disease/is not hard to get approved like IVIG). We were told that the HD Sol pulsing was a more aggressive treatment protocol anyway. Other non-medical things we did that I think helped: -We had his friends over as much as possible, even when he was super sick and really could only play video games (his friends were great and helped with that, and I have never found a 9 yr old boy who doesn’t want to play video games). Gaming was his favorite thing to do b/c he said he didn’t have to deal with his intrusive images/feelings of fear/sunlight. The social was a big big help I keeping him as normalized as you can be when not attending school, and later, in getting him back to school (that is how to see your friends the most!) -I think one of the best things we did, in retrospect, was take vacations that were in the sun/lots of swimming/with other kids. This got him back in better shape, but the sun exposure also seemed extremely helpful. I have since heard there is lots of research on the role of Vit D in other autoimmune diseases like MS (maternal grandmother has this), so we are giving 5000 IU of Vit D/day. Also, I think our vacations are helpful b/c of getting them out into a different routine/change of scene helps the brain forge new pathways. -We tried getting him to do academic work, but this really never worked at all… Best was Kahn Academy, which he would do some of but only review of stuff he already had learned before getting sick/he would always stop where “new learning” would start. We really struggled with this b/c the advice is to push them and this is hard if your kid won’t even let you read to him). We only got him back to academics/school after done with all HD Sol infusions (perhaps brain fog lifting) - Nightly Benadryl was big help for sleep. Have stopped now, but drs said to fine to use as needed. Today Son is so much better (outside the academic context I would say 95% back). Anxiety/fear sensation/intrusive images, joint pain, fidgeting, restlessness, irritability, handwriting - all the other symptoms much much better. Back in school! Very social. Main remaining issues have to do with cognitive functioning/cognitive fatigue, specifically with short-term memory and processing speed. The anxiety he still has is actually what I would term reasonable anxiety at having missed so much school and not having his brain fully back up and running academically. I would be anxious about that too. We are not sure how best to help the cognitive functioning come back other than to wait. This is our challenge today. We also have not had a major test of his immune system (no major illnesses in our house since he got so sick) so we will have to see if his immune system “holds.” Questions we would love help with 1. How to help cog functioning (anyone tried “cog med” or neurofeedback? Anything else other than time?) 2. I still don’t feel like I have a clear sense of whether this is supposed to improve with puberty? Any insights there would be very welcome!!!

There are a couple of possible factors (if not infection or immune dysfunction based): 1. SSRI "poop-out" is real, unfortunately; you can find first-person accounts of it in forums and discussion groups all over the world, and I've seen it first hand in family members. That said, just anecdotally, I think some are more prone to it than others. Though the science is still not fully researched or documented, it seems to have something to do with the particular receptors that each SSRI affects; pretty much every SSRI has a different formulation that impacts different receptor sites (whether dopamine, serotonin, 5H-T, norepinephrine transporter receptors, for instance), even though there's typically some crossover among all of them. At any rate, if the receptor sites become unresponsive, which they can do, then the med doesn't work as well. Weight typically has little to do with SSRI dosage. 2. We had a psych (and she's actually somewhat versed in PANDAS/PANS and certainly doesn't dismiss it) note for us that a component of our DS's increased challenges at an older age, as compared to when he was younger, were a factor of the expanding "gap" between what were age-appropriate expectations for behavior and what his jumbled brain could manage for him at the time. It's one thing for a 3 or 4 year old to melt down in public, but when a 12, 14 or even 18 year old can't manage all the stimuli coming in and melts down, it's a whole different animal! So, even if nothing dramatic changes in terms of environment or demands, just the fact that she's getting older and so society, friends, outside world and maybe even you tend to expect more "self-management" of her, that's a kind of pressure all on its own that might result in increased anxiety. Sorry you're continuing to go through this; we've been there (a protracted "story"), so I know how frustrating and demoralizing it can be at points. All I can say is that, in your shoes, I would probably first try to rule out any physical (infection or immune) component to the decline, and once having done that, maybe look into the mental health options available to try and improve the quality of your DD's life (and yours by extension). I don't know if you've considered it, but there are now the genetic testing options available (like Genomind) that hone in on genetics and any mutations that may interfere with the effectiveness of various medications, including SSRIs. That might be one route to pursue, particularly if the others aren't fruitful. All the best to you.

My son was older when PANDAs struck him (12), but we still saw lots of meltdowns, mood swings and generally age-inappropriate behavior. I don't know about these being the result of a herx. I attribute my DS's behavior during that period to just feeling overwhelmingly anxious and out of control...his executive functioning was basically nil, so all of the things that had previously come naturally to him and he could do well and with joy, were no longer available to him. That was incredibly distressing and frustrating, so his emotions were constantly taking over and he'd melt into a puddle of dysfunction. I might suggest the following: Eliminate all but the essential activities for a while so that he's not over-stimulated and/or expected to "handle himself" in as many stressful situations, even if they all were fine before; Try using anti-inflammatory and/or calming meds and/or supplements to help his brain "settle down" a little while the abx do their thing (ibuprofen, valerian root, etc.); To the extent possible, build lots of "breaks" into his day to allow him to rest and regroup as managing oneself under this level of stress is very tiring, emotionally, mentally and physically, so he's probably in need of some quiet breaks during which he's not expected to play with others, engage with others, etc.; While you make the preceding accommodations, don't entirely forego your family routine, age-appropriate expectations, etc. Decide what non-negotiables you'll continue to enforce so that he knows there is still structure, support and boundaries even while he heals. It will help him feel safe, secure and less out-of-control in the end. All the best to you, and good luck!

I totally agree with bobh. My kids were lucky to find doctor L in Washington DC to diagnose them both as having PANDAS (very different symptoms though) and when she put both of them on steroids there was an immediate difference. That noted, if you noticed a difference in your symptoms your OCD and other symptoms it would appear to be biologically based... My kids also had very similar symptoms that you mention. We have never done the Cunningham panel but have worked with first D. L with antiobiotics and then moved on to a wonderful naturopathic doctor, using supplements, Low dose naltrexone, and other things to bring both kids symptoms way down. We also found borrelia Lyme in both kids and mycoplasma with my daughter and have worked with those areas too. My daughter also had her tonsils and adenoids out and it also helped significantly. She had a number of OCD issues that are still there but not nearly as significant as they used to be. She still has the sensory issues but her handwashing has almost totally gone. My kids were diagnosed six years ago and are still have their moments but it is under control and they are able to function quite well despite some very bad years. I am not sure where you are from or your language, but there are many support groups on Facebook in different countries and states in the US. I am currently in Europe if you need help there. You are a strong man and you will overcome this. There are lots of people out there to support you like on this forum. We all want to help.

Hey, I'm putting this article here b/c when I've searched for it recently it's been behind a paywall...but today it's not. So now it's here for safe keeping in case it becomes inaccessible again. Antibiotics have a role in PANS even with no infection Publish date: February 9, 2017 By: M. Alexander Otto Clinical Psychiatry News EXPERT ANALYSIS FROM THE PSYCHOPHARMACOLOGY UPDATE INSTITUTE SAN FRANCISCO – Antibiotics might help in pediatric acute-onset neuropsychiatric syndrome (PANS) even if there’s no apparent infection, according to Kiki Chang, MD, director of PANS research at Stanford (Calif.) University. first step at Stanford is to look for an active infection, and knock it out with antibiotics. Dr. Chang has seen remarkable turnarounds in some of those cases, but even if there’s no infection, “we still do use antibiotics.” There are positive data, “although not a lot,” indicating that they can help. Some kids even seem to need to be on long-term antibiotics, and flair if taken off long after infections should have been cleared. Dr. Kiki Chang “We don’t know what’s going on. We try to stop antibiotics if we can; if patients relapse, we think the benefit [of ongoing treatment] outweighs the risks. Some kids just have to be on antibiotics for a long time, and that’s an issue.” Perhaps it has something to do with the anti-inflammatory properties of antibiotics like azithromycin and amoxicillin, or there might be a lingering infection, he said at a psychopharmacology update held by the American Academy of Child and Adolescent Psychiatry. PANS is a recently coined term for the sudden onset of obsessive compulsive disorder (OCD) within a few days of an infection, metabolic disturbance, or other inflammatory insult. Anxiety, mood problems, and tics are common. There might be severe food restriction – only eating white foods, for instance – that are not related to body image. PANS broadened the concept of pediatric autoimmune neuropsychiatric disorders associated with streptococcal infections (PANDAS), which was first described in 1998, although it’s been known for generations that acute streptococcus infections can lead to abrupt psychiatric symptoms. PANS is the topic of ongoing investigation, and Dr. Chang and many others are working to define the syndrome and its treatment, and trying especially to determine how PANS differs from typical OCD and other problems with more insidious onset. The idea is that inflammation in the patient’s brain, whatever the source, triggers an OCD mechanism in susceptible patients. As a concept, “we believe it’s true,” he said. For now, it’s best to refer suspected cases to one of several academic PANS programs in the United States, as diagnosis and treatment isn’t ready for general practice, he said. If more than antibiotics are needed, Stanford considers targeting inflammation. Some children respond to easy options such as ibuprofen. Dr. Chang has seen some helped with prednisone, but treatment is tricky. There might be an occult infection, and PANS can present with psychiatric issues that prednisone can make worse, including depression and mania. Intravenous immunoglobulin is another of the many options, “but we really need about four treatments” to see if it helps. Cognitive behavioral therapy and family support also helps. As for psychotropic medication, “we often use them, but they rarely take away the acute symptoms,” and PANS children seem especially sensitive to side effects. “I’ve seen many of them become manic on SSRIs. I’ve seen some of them have very strong [extrapyramidal symptoms] with atypical antipsychotics. You have to be very careful; we don’t have any good studies” of psychiatric drugs in this population, he said. At the moment, PANS seems to be more common in boys than girls, and most patients have a relapsing/remitting course and a family history of autoimmune disease. Suicidal and homicidal ideation can be part of the condition. Dr. Chang believes PANS could be part of the overall increase in autoimmune disease and psychiatric disorders in children over the past few decades. “We have more kids who have special needs than ever before,” large, objective increases in bipolar, autism, and other psychiatric problems, as well as increases in psoriasis, nut allergies, and other autoimmune issues. “What causes it is harder to say, but there has been a change for sure in kids and their immune system development that does affect the brain, and has probably led to more neuropsychiatric disturbances,” he said. “No one talks about it. Everyone thinks that it’s some sort of pharmaceutical industry conspiracy” to sell more drugs by increasing scrutiny of children. “I think it’s caused by something in the environment interacting with genetics,” whether it’s infections, toxins, or something else. “We don’t know. Any kind of inflammation can be a trigger” and “we know inflammation” is key to “many psychiatric symptoms. I do think there’s something going on with kids over the last 30 years,” he said. Dr. Chang is a consultant for and/or has received research support from Bristol-Myers Squibb, Lilly, Merck, GlaxoSmithKline, and other companies. aotto@frontlinemedcom.com

I am an adult female. I was never diagnosed with any mental illness as a child, as my parents addressed any psychological issues as solely behavioral problems to be disciplined. That being said, I suffered from very severe OCD symptoms that (I suspect) **might have been a result of PANDAS. [As this was never diagnosed nor treated, it is purely personal seculation based on the symptomology and relative timeline of exposure to streptococcus- I also share other speculations as to possible causes for the disorder, though mostly suspect the former.] I can say that for myself; the OCD began to dissipate very significantly after puberty and continued to do so over the years. I have no significant nor any life debilitating symptoms remaining of OCD whatsoever. The most debilitating and severe period of OCD that I had was between the ages of about (I think) 7-12. However, the habitual thought patterns that I had developed in my brain during that time (mind you with no counseling/medication or understanding of it as a disorder whatsoever) did take a significant amount of years to fully recover; therein many behaviors still remained. I say this because I do believe that it is highly possible that the neurophysiological OCD had in fact been mostly if not wholly eradicated during the pubescent period in which I would had been experiencing many hormonal and chemical changes in the brain possibly countering or overwhelming some others. (Again- this is much personal speculation.) Nonetheless, because OCD is what it is, I find it impossible to consider these behaviors would disappear at the same time. Gradually they did go away. I imagine then on came bigger problems of being a teenager and every little bit by bit the tics and compulsions and obsessions did dissipate. I was VERY secretive of rituals (tapping/counting/hoarding/maaany others) and did them in a way not to be seen. Because of this and that whatever my parents might had known was never pronounced to me as a "mental disorder", I credit my ignorance to having an actual illness in a way to having had allowed me to recover; as there was no stigma or added obsession (i was highly obsessed with everything) that I was handicapped with a psychological ailment. In a way, the denial around me helped. This is NOT to diminish that as a whole, however I suffered far more severely because of it. But it is worth noting i think that sometimes less attention may help with recovery. Overall of course, a child needs their mother so much, and for one with ocd- they really need their mom. I love my parents who did just as they felt best, but during that time (that to this day I remember SO well as being so truly horrifying for me), I didn't have that. I was so extremely confused, shameful, scared, and exhausted. And so incredibly isolated. I am so grateful pediatric illnessness like these are finally recognized and kids now can have amazing mothers like you who are on their side of the struggle with them rather than at the other end of it. No child should have to feel so shamed, scared, and alone. Illness, treatments, recoveries and even regressions are just as any other experiences and trials of life. They are part of each individuals journey into becoming the person they are meant to be. And children are (be them healthy/disabled/'normal'..whatever) absolutely beautiful and perfect every step of the way. This is what I wish my mother would had said to me. So i could have understood that I'm not my illness, but my strength to battle this is part of what makes me so incredible and builds my character into the fantastic person I am to become. (Of course- this and also 'lets see a psychiatrist and get treatment'), but all the same Sorry about the tangent! I came about writing this commenr ( now... memoir) in searching this subject in Google just now out of random curiosity while reflecting upon my past. When I saw your q, I felt I just had to respond with hope because my google search q was: "my pandas ocd gone after puberty". When I read this, I was so inspired by you and what you are doing for your child. Asking these questions, treating her, and being in the fight along side with her. I joined just so I could write this to you to thank you for what you are doing for her and to send the hope to u both that it absolutely goes away. I can only imagine how exhausting and challenging it could be for a parent. But can also know first hand how horrible it is to have the illness, and to go it alone as a kid is beyond awful. So that's it, really. BLESS you mom for taking care of your girl and it absolutely does get better, as I feel that indeed post pubescence changed everything. So yes- hope is there and she WILL recover. I had a fantastic time by high school being ocd free (mind you tendencies there but I feel this is a bit of personal brain wiring and takes lots of time and work . It was NOT like it was before puberty). Keep being the AMAZING kick mom you are. I'm so SO happy she has you. Just needed to respond. [[**As a side note: in respect to the other comment made by a parent in which i felt some ocd kids might be getting stigmatized by the illness and certain behaviors are being either dismissed or over addressed as psych symptoms when in fact they are either one of 2 things: an unrelated call for help or personal struggle environmentally that isn't to do with ocd, or otherwise just a very healthy response to stresses of puberty. I wanted to throw out the fact that nearly every pubescent child/young adult/teen are often incomprehensibly 'nuts by nature' too! Please consider it's a crazy time for them (thier brains, bodies, self identy, sense of life..) and the healthiest girl during puberty can be a total weirdo obsessive anxious nightmare of a kid too I wouldnt had wanted my parents to say to me it was the 'ocd' every time I acted out (either by way of empathizing/diminishing/ reprimanding or whatever) and I could be horrid at times. I fear it would had kept the obsession for me longer and I would had never believed I would be rid of it. . Maybe i would had even used it as an excuse to get away with bad behavior which would had also drawn self identity to ocd and inhibited recovery . A BIG part of breaking this very strong mental lock is to forget it whenever possible. And it is VERY hard to do, but a beautiful thing when it happens. And each instance builds into healing. Sometimes it is rare and fleeting. Sometimes it is overwhelmed by something else negative (like even some nutty teen drama being created). I would just hate a reminder if it wasn't on my brain already. So i say, if they are being teen brats and it is not 100% textbook symptomatic of OCD, then dont call them out on having a psychological illness, call them out for being brats! (Just my opinion)]]. Good luck to you and your amazing kid. You're really a hero to me. Truly. Much love.

Skin picking, trichotillomania, is indeed a common type of compulsion/OCD. Even if it's a tic, tics are likewise symptoms of PANS/PANDAS.

My heart breaks to read this but I am also encouraged by a parent that is striving for healing and being that wonderful fighting advocate that these poor kids so very much need. I have two children. Both with difficult stories. Very similar to yours. Firstly, I will say there was no single organic reason for their fall . Everyone is different so for some its treat the lyme of mold and bingo the child heals. My oldest has the marks and we were told too that they were stretch marks . He is tired all the time, easily overwhelmed and tics. Our youngest was home-bound for years. What has worked for us? 1. Clean eating. They both have detox issues so every time we treated for Bartinella/Lyme they would fall apart on even the smallest herb or anti B. UHG So we could not do much. When they were at their worst they were very sensitive to yeast and Molds but as they healed Mold became less an issue. NOW Most foods they eat are organic, lots of veggies and fruits, grass fed beef and chix along with cold water fish 2x a week (good for brain inflammation) We removed Gluten/dairy/soy. The immunologist (conventional from big children's hospital) believes that certain kids suffer from innate immune responses from certain trigger foods and these three she found to cause inflammation effecting brain the most. Huge difference for my youngest especially. He is also supper super thin and she has him on amino acid plant based or bone broth based protein shakes between meals and we use high fat organic coconut milk in can. His mind began to clear in a few months just by cleaning up diet. 2. Having Bowel movements 2x a day helped their poor detox for sure. Increased pure water and actually used fiber powder for a while until they both go now 2x a day. 3. Good counseling because even if its caused by something outside of themselves the chemistry is still off and the OCD and anxieties/depression are there and by learning how to deal with these emotions better help's them navigate thru these horrible waters. As we treated our youngest son for Bart all his emotional issues (agoraphobia, Bi polar, OCD) disappeared. WE used low low low dose SSRI and nutritional lithium as well. WE continue to treat yeast, bart with herbs and cycles of 5 day Tinizidol for gut bacteria. Both are NOW able to handle the treatment bc their bodies are functioning better. Diet was a huge life style change and took me 3 years to finally own it and implement it. Best thing we ever did. Not the cure ALL but huge piece of the puzzle for us. Now not everything that comes our way causes them both to fall apart and start over. They are beginning to strengthen the terrain so that the genetic predispositions don't derail them at every turn. Keep searching, praying and never give up!!!

Clearly, you'd want to look for infections. I'd set up an appt with your pandas doc (or whoever; really, any doc who will do it) to run some bloodwork ASAP, both for infections and immune system stuff, IgG levels and so forth. In the meantime, I'd haul the kid off to the nearest urgent care for a swab and throat culture today. It seems to me that this sort of situation is to be expected with PANS/PANDAS.

Perhaps he has a new infection.

We don't know. We just stopped again for the summer. We will check levels in August to see if levels held. They held in the normal rangenlast summer, but had fallen within the normal range. My kids have hypogammaglobulinemia, possible CVID, not confirmed CVID.

We did HD on both boys in 20014. The worst PANDAS symptoms dissappeared over night and never came back. After 6 or so months, they kept getting sick with mild flaring and also flaring on exposure. ID specialist and immunologist discovered hypogammaglobulinemia, possible CVID. LD monthly (.5g/kg for 6 months, stop 3 then 6 more months) worked wonders. No more flares, even when ill and on exposure. LD was the best thing.

Hello, My son has been suffering with PANS/PANDAS since age 8. He is now 14. He was diagnosed at age 11 by a PANDAS doctor after a few years of having standard mental health treatment without success. After two years of antibiotics he received IVIG and six week post-IVIG became significantly worse. Our doctor had never seen this before. We called Dr. K. in Chicago who said my son probably still had strep in his tonsils. We were unable to get a doctor to remove his tonsils based on the PANDAS diagnosis alone. One ENT gave him clindamycin which has a history of getting into tonsils better. His PANDAS doctor then ordered the Cunninham Panel which was negative. My son did not want to participate in their study. We were left with returning to conventional neurology for the tourette symptoms and psychiatry for the OCD. A new neurologist/psychiatrist (a conventional mainstream doctor) heard our story and thought we should try the IVIG again. We did a second round and my son improved greatly then after the third round he's like his old self (as much as I can remember him after all these years.) It feels like a miracle to me. Although he's not 100% better it's remarkable enough for everyone in his life to notice. I'm not sure what helped this time. Maybe the clindamycin before the IVIG? Do not give up based on a Cunningham Panel. It is still experimental. I was crying when the doctor told me it was negative and IVIG would not work for my son. I was certain it was PANDAS. They (Cunningham) are still looking for markers and the current panel does not cover all possible markers which is why they ask families to participate in the research to find new markers. If I had turned down the offer for more IVIG based on the other doctor's recommendation from the results of the Cunningham Panel my son would not be on his way back to wholeness today. His tics are almost completely gone after years of severe tics and anxiety is very low. Almost normal. Of course after years of being in the grips of PANDAS my son has much catching up to do with peers. We still have much healing to do. I'm not sure he will ever catch up but at least now he has a chance. Good luck to everyone. Eva

I want to make sure everyone gets this link to the Discover article "Hidden Invaders" on PANDAS. Someone posted about the article on this forum and now Discover has posted it online so it's easy to share. http://discovermagazine.com/2017/april-2017/hidden-invaders#.WQsk069P1mI.email

Hi Everyone. I just had to sign up to this forum to let you all know that Clerodendrum inerme has dramatically helped my sons tics .It is truly a miracle plant! We live in South Africa and I sent my husband to India in 2012 to source the plant which now grows as a bush in our yard. My sons tics began at age 3 (started with eye blinking, shoulder shrugging, got worse and worse...etc.) After years of research and tears,our prayers to Allah were answered when I came across the study on Clerodendrum Inerme for tics. My son is 10 years old now. And a 'normal' little boy in every way.We dehydrate the leaves, grind them fine and put the powder into capsules . We used to liquidize the leaves with water and strain, but he could not handle the bitterness. Right from the first dose there was a major improvement. In the beginning I would give him the juice twice a week, then once a week , then once a month. He can now tolerate all kinds of foods that were once forbidden. He will have 2-3 capsules every 2-3 months or so when I notice he is stressed about something or has gone overboard on junk food. A day later and he is fine again. I promised that if the plant worked I would share this amazing information and I pray for all the children and parents that you derive benefit from it.

Decent Symptom List For LYME/Co-infections. LYME DISEASE AND THE CO-INFECTIONS 07/26/2010 Lyme disease is a major health problem in the United States. Since the infective agent, the bacteria known as Borrelia burgdorferi, is so difficult to locate and diagnose using present-day blood tests, it often goes undiagnosed and untreated or improperly treated. Even with practitioners who consider themselves Lyme-Literate Medical Doctors (LLMDs) or Lyme-Aware Medical Practitioners (LAMPs) diagnosing this infection can be very frustrating for several reasons. There are several great books that address the controversy, the politics, the diagnosis, and the treatment, and I will refer you to them for further information. However, two of the most important reasons that proper diagnosis is so difficult is that Borrelia burgdorferi can change its shape and form as a way of protecting itself. These protective forms rarely, if ever, show up in the blood and hide away in other tissues that would require biopsies to identify them. And, second the blood labs used to identify our immune response to these organisms have not been completely refined and, at best are 70% effective and, at worst, only 30% effective. The majority of healthcare providers, not being Lyme knowledgeable, busy themselves treating the symptoms or possibly even treating the wrong disease. Lyme disease is also known as "The Great Imposter" or "The Great Imitator." It can mimic such conditions as chronic fatigue syndrome, fibromyalgia, autoimmune arthritis, multiple sclerosis, amyotrophic lateral sclerosis (Lou Gehrig's disease), schizophrenia, bipolar disorder, and many different heart and vascular conditions. From the practitioners point of view, it makes it even more difficult to properly diagnose and treat when Lyme disease is very often accompanied by any a number of, just as bad or worse, organisms such as Babesia, Bartonella, Ehrlichia, Cytomegalovirus, Epstein Bar Virus, Herpes Simplex I and II, Human Herpes Virus 6 (HHV 6), Rickettsia, and Mycoplasma. I have listed below some of the symptoms related to chronic disseminated Lyme disease (Borreliosis), Babesiosis, and Bartonellosis. You will notice that there are many symptoms that overlap with these three infections. Please circle (O) the bullet if you are presently experiencing this symptom and place and (X) at the bullet if you've experienced this symptom in the past. Next to the (O) or the (X), please rate the symptom on a scale from 1 - 10. Very rarely or few symptoms would be a 1 while often and/or severe would be a 10. Lyme Disease Arthritis-like joint pain and swelling (often migrating or moving from joint to joint) "Brain fog" with poor concentration, focus, and/or attention Disrupted sleep cycles, resulting in poor quality sleep, too little sleep, difficulty staying asleep, or early awakening Back pain Light sensitivity and/or blurred vision, increased eye floaters Ear symptoms (hearing loss, ringing in the ears, or sensitivity to noise or certain frequencies) Chronic and/or severe fatigue with minimal stamina Facial paralysis (especially Bell's Palsy) Chronic pain and tender points throughout the muscles of the body Walking and balance problems Headaches Impaired muscle coordination Impaired reflexes Memory loss (especially short-term memory) Muscle weakness Nerve symptoms (numbness, tingling, burning, vibrating, or shooting) Night sweats, clamminess, unexplained fevers, flushing Unexplained weight change (loss or gain) Unexplained hair loss Swollen and/or tender glands Sore throat Testicular / pelvic pain Unexplained menstrual irregularities Unexplained breast pain / milk production Sexual dysfunction and loss of libido Upset stomach with nausea and possibly pain Changes in bowel function (constipation or diarrhea) Muscle twitching of the face or other muscles Increased motion sickness, vertigo, or poor balance Tremors Confusion, difficulty in thinking Difficulty concentrating / reading Disorientation (getting lost, going to the wrong places) Speech difficulties, vocalization problems, problems writing, word block Exaggerated symptoms or worse hangover from alcohol Over 50% of those with chronic Lyme disease exhibit mental and emotional symptoms including: Behavioral disorders including impulsive acts of aggression and violence Extreme mood swings between depression and mania Chronic depression Dementia Eating disorders Hallucinations Mood swings Panic attacks Extreme fears or phobias Schizophrenia Personality disorders (radical change in someone's personality) Thoughts of suicide Irritability A large percentage of individuals with Lyme infections also exhibit heart and vascular symptoms including: Shortness of breath with minimal exertion Gasping for air Irregular heart rhythms (occasional irregular beats or beating too fast known as tachycardia) Chest pains / soreness in the ribs Enlarged heart Palpitations Fainting sensations Non-productive cough History of heart murmur or valve prolapse Two major clues that Lyme is the cause of the above symptoms are: the progressive worsening over time of a multi-system pattern of symptoms, and the tendency for these symptoms to wax and wane in a cyclical fashion. That is, every 3 to 6 weeks, it seems that the symptoms get worse for a few days, after which they resume the previous pattern. Babesiosis Chills Fatigue and often excessive sleepiness Night sweats often drenching and profuse Severe muscle pains, especially the large muscles of the legs (quadriceps, hamstrings, buttocks, etc) Neurological symptoms often described as "dizzy, tipsy, and spiciness," similar to a sensation of floating or of walking off the top of a mountain onto a cloud Depression Episodes of breathlessness, "air hunger" and/or cough Decreased appetite and/or nausea, perhaps vomiting Spleen and/or liver enlargement Laboratory abnormalities that may include low white blood cell count, low platelet counts, mild elevation of liver enzymes, and elevated "sed rate" Headaches (migraine-like, persistent, and especially involving the back of the head and upper neck areas) Less common symptoms are joint pain (more common with Lyme and Bartonella), anxiety and/or panic attacks (more common with Bartonella), lymph gland swelling (more common with Bartonella and Lyme), non-specific "sick feeling" (also encountered with Bartonella and Lyme) Dark urine Enlarged lymph nodes Significant memory changes Struggle organizing Profound psychiatric illnesses Significant fatigue, daytime sleep urgency despite nighttime sleep Waves of generalized itching Balance problems with dizziness Severe chest wall pains Random stabbing pains Weight loss Sensitivity to light Sleep in excess of 8 ½ hours per night Sore throat with unproductive cough Bartonellosis Fatigue (often with agitation, unlike Lyme disease which is more associated with exhaustion) Low grade fevers, especially morning and/or late afternoon, often associated with feelings of "coming down with the flu or a virus" Headaches, especially frontal (often confused with sinus) or top of head Eye symptoms are common and include blurred-vision episodes, red eyes, dry eyes, depth perception problems, retinal problems, and light sensitivity Ringling in the ears and sometimes hearing problems (decreased or even increased sensitivity known as hyperacusis) Sore throats that are recurring Swollen glands, especially neck and under arms Anxiety, panic, or worry attacks; others perceive as "very anxious" Agitation, irritability, rage, impulsivity, or aggression Episodes of confusion and disorientation that are usually transient (and very scary), often can be seizure-like in nature Poor sleep (especially difficulty falling asleep), poor quality sleep Joint pain and stiffness (often symmetrical, as opposed to Lyme which is often unsymmetrical and often migratory) Muscle pains, especially in the calves; may be twitching and cramping also Foot pain in the morning involving the heels or soles of the feet (sometimes diagnosed as plantar fasciitis) Nerve irritation symptoms that can be described as burning, vibrating, numb, shooting, tingling, and so forth Tremors and/or muscle twitching Heart palpitations and strange chest pains Episodes of breathlessness Strange rashes recurring on the body, red stretch marks, peculiar tender lumps and nodules along the sides of legs or arms, and spider veins Gut symptoms, especially acid reflux Shin bone pain and tenderness Fainting Bladder pain, irritation, infections Genital disorders Obesity and body swelling The list of Borreliosis, Bartonellosis, and Babesiosis symptoms were borrowed from Joseph Burrascano, M.D. (Checklist for Lyme Disease 2008), Kenneth Singleton, M.D., M.P.H. (The Lyme Disease Solution 2008), and James Schaller, M.D. (Bartonella: Diagnosis and Treatment 2008 and The Diagnosis and Treatment of Babesia 2006) http://www.drchuckcochran.com/articles/lyme-disease-and-the-coinfections/