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  1. 3 likes
    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!
  2. 2 likes
    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
  3. 2 likes
    Skin picking, trichotillomania, is indeed a common type of compulsion/OCD. Even if it's a tic, tics are likewise symptoms of PANS/PANDAS.
  4. 1 like
    The question of whether to do the T&A in the presence of a sinus infection is a question for the ENT performing the T&A. The more important question is whether you can do both the T&A and sinus surgeries together, as that would be preferred, as I understand it. My kiddo had a T&A last spring and is now scheduled for sinus surgery with a new ENT. The new doc is surprised and annoyed that the old ENT did not scan the sinuses before doing the T&A, because it should have been done in one surgery . New doc felt he could tell just by looking at him that he was stuffed. However, he is not infected, just has abnormal tissue in the nose blocking drainage (fix deviated septum, turbinoidectomy, ethmoidectomy). I was surprised that he was surprised that this wasn't handled earlier.
  5. 1 like
    Hi Bob, Thanks for your kind words of encouragement. Yes, I can gladly confirm a very positive response to clarithromycin - I've been taking it for roughly a week now, and have seen an almost spontaneous improvement. I will continue to update, and see the process through. I am due sinus surgery soon, and then the decision will arise as to whether or not I can finish treatment in Chicago. Obviously, the single biggest diagnostic factor was the response to the anti-inflammatory/immunomodulatory effects of the antibiotic, which is definitely an upshot!
  6. 1 like
    My wife has used a few homeopathic remedies for our son, but I don't believe that they helped in any significant way. In fact, when a non-believing (of PANDAS/PANS) doctor suggested our improvement on abx was placebo effect, my reply was "why didn't this kind of placebo effect happen with the homeopathic remedies we tried before the abx?"
  7. 1 like
    My DD (almost 13) started menses about 6 months ago. Her PANDAS symptoms had been pretty mild and manageable until a few weeks ago- mostly anxiety/OCD which is worse at night. Her OCD consists of intrusive thoughts as the obsession, and telling me (mom) as the compulsion. She can't go to sleep until she has purged her brain of all of the bad thoughts and I assure her that everything is OK and she doesn't need to worry. Within the past few weeks, those intrusive thoughts have gotten much worse- more disturbing to her and more intense and frequent. Bedtime is a nightmare! The strange part is that since puberty, her tics have become almost non-existent. Before puberty, she cycled through all sorts of tics. Before puberty, when PANDAS was bad, the main symptoms were tics, anxiety, and intrusive thoughts, but she never seemed depressed. In fact, when tics were bad, her seemed almost giddy she was so happy (high Dopamine?). Now, after puberty, the tics are gone, but along with the OCD that I described above, she seems depressed. Maybe it's because the intrusive thoughts are more disturbing and she often talks about how guilty she feels about the thoughts. She never mentioned guilt before. She's had PANDAS since she was 5 (maybe before). Treatment has included antibiotics and IVIG one year ago. She seemed to get worse for many months after the IVIG, then slowly got better, though I'm not sure if she got better than she would have gotten without it. Anyone else experience a big change in how symptoms present after puberty? I've read all the thread I could find about puberty, but mostly people were discussing whether symptoms would go away or not. Thank you!
  8. 1 like
    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.
  9. 1 like
    Hi argentanya, From what we understand the amount of msg in capsules is quite small. But that doesn't mean it could not cause a reaction. Do you always see the increase shortly after she takes them? What nutrients is she taking? You might want to experiment with finding supplements with vegetarian capsules. They are quite common now. Even some gel caps are now in a vegetarian capsule though they are not as easy to find. When supplements are in a powdered form, they can often be opened and put into vegetarian capsules like these on Amazon. Please let us know if any of this makes sense. We could help you find non-gelatin nutrients if you wish! How has your daughter been doing?
  10. 1 like
    I too agree that pursuing a PANDAS/PANS treatment protocol would be appropriate. There seems to be a wide range of symptoms to PANS, and my own experience is that it can morph a lot at times. It is (to me) remarkable that there is as much similarity as there is amongst PANS patients, considering how complex the brain and its reaction could be when bombarded with anti-neuronal antibodies. I am presuming that you do have PANS, because the antibiotics helped. According to http://www.medicalnewstoday.com/articles/248159.php, "Psychosis is not a disease in its own right; it is a symptom." So if it is in your case not a symptom of PANDAS or PANS, then it would be from some other disorder that perhaps is unknown. My argument for sticking with a PANS treatment is statistical, but it's strong. Take the disorders that you might be labelled with, and presume that they are distinctly separate and independent of each other. For example, whatever other disorder could have caused the psychosis, and PANDAS. They are likely both relatively rare. To get them independently is like getting hit by lightning twice. If they are really rare, it could be like getting hit by lightning on two different parts of your body at the same time. Yes, its possible, but its not the first assumption that should be made. The appropriate first assumption, is that all the seemingly disconnected symptoms are (most likely) caused by one source thing (one lightning strike) that causes a lot of complications (as an attack on the immune system might do especially when it morphs into an autoimmune disease). That one complicated thing just manifests in various and different ways, and differently over time. Only if that "one cause" assumption clearly fails should you move on to the much rarer possibility that you actually have 2 different root cause sources for your symptoms. It is this kind of argument that was made by Dr. William Benitz for the very first PANS patient at the Stanford PANS clinic. He said “I have a rule of thumb for pediatric patients: They’re only allowed to have one disease at a time. It’s not 100 percent true, but for a previously healthy 7-year-old to develop what appeared to be psychiatric and hematologic symptoms from two different, independent processes didn’t make sense. There had to be a unifying diagnosis.” You could actually come up with what the "not 100" percentage is in your case if you know the incidence of the disease that caused the pyschosis. If a 2nd independent disorder occurs for less than 1 in 100 people (likely, I would guess), then Dr. Benitz's statement would be true more than 99% of the time. Why even expend your precious energy looking for another cause, first go with the 99%+ sure thing! If you are interested, you can see Dr. Benitz's quote and the full context of the severe and partly untypical PANS case he references in that quote here: https://med.stanford.edu/pans/news/brain-attack.html .
  11. 1 like
    Thanks. We have an appointment with Dr K in Illinois in 2 weeks and will most likely do IVIG. I am hoping for a positive response. A 2017 paper by the PANS research consortium lists some detailed guidelines for the treatment of PANDAS with immunomodulatory therapies. Also, the State of Illinois has passed Charlie's Law making it the first state requiring insurers to cover the treatment for kids with PANDAS. I am wondering if it is covered for people from out of state having the treatment/procedure in IL or if you have to be an IL resident?
  12. 1 like
    LIke many of your other symptoms, Hitman, yes, we can relate. And yes, I believe your "zoning out" is PANDAS/PANs related. My son used to do that almost constantly. Like he'd just blank out for a moment, be complete disassociated from where he was, what he was doing, what someone had just said to him, etc. There are a couple of kids here, at least, for whom anti-seizure medications have been successfully prescribed, even though there's no blatant evidence of actual seizure activity, reason being, some seizures are believed to be related again to glutamate dysregulation, and some of the anit-seizure meds help with that. My DS, for instance, was prescribed lamigotrine (non-generic name being Lamictal), and it was very helpful for him. Interestingly enough, additionally, his prescribing psych told us that Lamictal was used off-label for both some OCD issues as well as autism spectrum disorders. Perhaps something like this might be a missing piece of your puzzle? I would pursue glutamate modulation, whether via pharmacological or "natural" routes.
  13. 1 like
    Dear All, I don't really have much of a purpose writing this post other than to describe to you the devastating repercussions and consequences that life a side has thrown me whilst being 'locked in' to this illness. Here in the UK, I'm a struggling university student currently on medical leave - the responsibility, time, planning and organisation of placement and finance is a huge burden for all, let alone for someone severely incapacitated. My story follows a familiar relapse/ remitting course of illness for several years. For the best part of 8 months I've been walking around in hazy fog totally unable to organise my thoughts, my short term memory is shot and I've had much difficulty in general functioning full stop. The worst part of this illness is the ignorance and lack of support I've received from my own family, who have expected me to 'just picks things up'. It may appear to some from an outside perspective that I'm simply dealing with a clear case of munchausen, but pure isolation coupled with blasé style of wilful ignorance has kept me battering on to my parents for the help I feel I need. Time is precious and flies by very quickly, the new academic year is upon me, and I'm still entirely dysfunctional. I realise that yet again, I will have to postpone my return to everyday functional life and the chance to succeed in education. I've exhausted all available help from the NHS, and now my fate really does lie in the hands of Dr K and the financial resources of my parents - they simply have no due care for the symptoms I've displayed for many years, and are finding anyway possible to refute or brush off a claim of PANS/PANDAS. Usually, I can organise myself and everything I've done or achieved has been entirely self directed. I've had contact with a prominent neurologist in London, who after receiving Dr K's letter did acknowledge the possibility of a historical picture of pandas, but made it clear that any treatment protocols were restricted to use in children - he doesn't treat adults because of the 'lack of research'. My last hope is truly in Dr K, being totally friendless, having no girlfriend and my mind being on the rocks, I have no idea how I'm going to turn my life around for the 'umpteenth time'. He returns from vacation tomorrow, my parents have agreed to speak to him but are very reluctant to entertain the idea of going the extra mile despite all the suffering. What do I do? How am I going to turn this around and restore all previous function? I understand we are all strangers to each other, and that us guys are selectively few and far between in the everyday world. I just feel so lost, with no clear idea as to whether I will 'suddenly' get better this time. My ability to concentrate and organise myself is abysmal, my ability to speak fluently has just returned. And to be fair I'm no one should have to go through the terrifying or deal I have... I guess as the great man once said "The world is a dangerous place to live, not because of evil people, but because of the people who don't do anything about it..." Afterall, ignorance is always the true killer. Thank you guys for supporting me these last few weeks, it's kindly appreciated. I just wish the real world was the same, I long to return to my former self.
  14. 1 like
    Hitman -- I'm so sorry you're going through this and in a situation where you feel so isolated and under-supported. You know the forum is here for you, but I realize that comes up short in the face of struggling to access efficacious treatment and other resources. It stinks. And I have to believe that it's likely even harder when -- not unlike a hearing person who suddenly, tragically loses their ability to hear -- you remember how you felt and succeeded when you were "functional," and now you've lost that ability to function well, "normally." I can say, "Hang in there!" I can say, things WILL get better. But it won't mean much to you unless you find a way to get some relief, to find at least incremental improvements in your day-to-day functionality. I know you're trying to access immunological treatment via Dr. K. and whatever other avenues you can find. I'm wondering if you've also tried other, more readily accessible responses to address/alleviate inflammation and distress? I can't recall if you've posted anything regarding your diet, supplements, etc., but here're a few things that come to mind so that you can focus on taking some positive steps now, even while the future of your medical/PANDAs treatment gets sorted out: OTC anti-inflammatories, like ibuprofen vitamin supplements that are anti-inflammatory and/or glutamate modulating (can help with OCD) such as Omega's (fish and/or evening primrose oil), turmeric, curcumin, coconut oil, n-acetylcysteine (NAC), Vitamin D, quercitin, etc. an anti-inflammatory diet probiotics that support your GI tract and help decrease inflammation there and support the production of serotonin and other neurotransmitters weed or CBD oil (both are legal here on a state-by-state basis -- not sure about the UK) exercise and/or meditation therapy I know with my DS and some other older (non-pediatric) sufferers I've been in touch with over the years, being older and more mature carries a bit of a different burden for you than it does for younger PANDAS/PANs victims; for the kids, their parents shoulder a lot of the stress and burden, but when you're older, those around you -- and you, yourself -- have a higher bar for you, your behavior and your functionality. Somehow, you're supposed to continue to function and look after yourself and your needs, even though your thinking is hopelessly disorganized and your fears and anxieties command an inordinate amount of your time and energy. All I can suggest is that you fight the tendency to focus on what it is you DON'T/CAN'T have at the moment, and take steps -- even just the tiniest and slowest of steps -- toward what you CAN do and CAN have. There's a very real tendency to fall into a state of hopelessness and helplessness, and then inertia and your OCD's tendency to amplify the fears and anxieties really kicks in and convinces you there's nothing you can do but feel horrid and lonely and crappy. But you can try and force yourself to do just one thing each day, maybe, that ignores and contradicts those tendencies, whether that's to take a brisk walk or make a therapy appointment or maybe try and return to a favored hobby or past-time that you've recently sacrificed at the feet of your illness: reading, writing (your posts here are very eloquent -- perhaps you have an inner novelist lurking about for an opportunity to break out?), gardening? Reclaim little pieces of your life, if you can, however small. And then celebrate that return to some functionality, however brief or small a glimpse. That'll give you something to build onto. And in the process of reclaiming little pieces of yourself and the moments that help you feel more like your real self, you may even find flashes of inspiration and creativity that can assist you further in pursuing your PANDAS/PANs treatment. I know it's a lot to ask of yourself. Again, my DS was fortunate to be younger (12) and have a life that was largely managed by his parents. But he still had demands made upon him, and we still set some expectations. Certainly, both were heavily reduced during the worst of his illness, but we didn't want him to entirely lose his grip on what real life looked like, what "normal" 12-year-olds were up to, what the outside world generally expected of a boy of his age, his intellect, his talents. We wanted him to always have goals, though we tried to set them as reasonably as we could for his current level of functionality. You, for the most part, have to do that for yourself. Not fair. Far from easy. But you can do it! I know you can! Wishing you all the best, and a giant, fighting spirit!
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    Em -- I can't claim to really know psychosis, nor do I have all the symptomology and/or definitional stuff at my disposal that you appear to have studied and grasped. But I can offer this observation. My DS's primary PANDAS presentation was OCD. When my DS's PANDAS was at its height, he definitely looked "psychotic" to us, and though he was young and didn't have the academic background regarding psychosis that you appear to have, his descriptions of how he was feeling and what was "bothering him" definitely fit in with your description. He appeared to be literally driven "crazy" by the OCD to the extent that it didn't even resemble OCD anymore because it was so "out there," so broken with reality, that there was no getting through to him. Therapeutic techniques that had worked for the previous 6 years didn't work anymore because they couldn't break through his new, self-created reality. He had an answer, an excuse, a rationalization for everything that was absurd, but it was very real to him. Abx treatment brought him back to a place where the therapeutic techniques could break through that bizarre fog again, and the "crazy" abated until we were left with a more classic presentation of OCD again. But even now, particularly under stress, my DS's lingering OCD can take on an "unreal" quality in terms of the way he will rationalize it or become subservient to it -- almost like he needs the unrealistic rationalization of it so that he can continue to engage in the ritual or compulsion without anyone -- his parents, his therapist, his friends -- trying to break through that "reality wall" and compel him to cease the behavior. I guess what I'm wondering, again, predicated only upon this very close-up and personal experience, is, can this "psychosis" actually be a complex and sophisticated extension of your OCD, your brain attempting to protect you from the naysayers and other manifestations of reality that could break in and challenge your sense of appropriate behavior? I know my DS and some other folks who contend with OCD that I know can be very analytical -- sometimes excessively (obsessively?) so -- particularly in an attempt to understand and/or explain themselves. Finally, I would also agree with the others that you have nothing to lose by pursuing PANDAS/PANs treatment and see if it alleviates any of the problems you're currently contending with. I suspect we're only a decade or so away from the discovery or declaration of the fact that ALL mental illnesses have, at their root, some medical/physical genesis. So, irrespective of whether, definitionally, what you're suffering from is PANDAS/PANs or psychosis, what do you have to lose? Chances are there's some inflammation in the mix, at a minimum. I say go for it! All the best to you.
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    Like Jan251, I believe that if you look at the clinical diagnostic criteria for PANDAS or PANs, tics are included but not exclusive or required. That said, I think sometimes it can be difficult to distinguish what constitutes a "tic," particularly if it fails to take a classic form (head-jerking, etc.). My DS had an OCD diagnosis for years prior to a PANDAS diagnosis, so we had a "pre-programmed" awareness of all things that took the form, to our eyes, anyway, of obsessions and compulsions. But, frankly, it took discussions on this forum for me to realize that his tongue-clicking and his leg-dragging were also tics driven by the PANDAs inflammation. Frankly, I would think that any manifestation of a movement disorder -- assuming no other diagnosis or perhaps even attributable to some other diagnosis, since many technical diagnoses are really just a label assigned to a symptom set, but not an identification of the underlying cause -- could be a PANDAS/PANs symptom.
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    OCD and PANDAS Mama -- Our successful antibiotic was Augmentin XR. Regarding psych drugs, I agree with you completely in terms of working on the medical issues first as best you can. We, too, initially had a psych who was all to willing to increase SSRI doses, add other meds, change meds, etc. at all too rapid a pace; like you, we trusted him because he was supposed to have the education and experience. But I think some have either been at it way too long and are now just going through the motions, with a tendency to push whatever the pharm sales rep most recently dropped on them, or they just want to satisfy distressed parents who want SOMETHING that will help their kid be more functional or compliant or calm or all of the above. I truly shudder when I realize what we put my DS's brain through, with this quacky psych messing with his medications as though there would be no repercussions. Once we found PANDAS and started antibiotic treatment, we were able to find a psych who had some PANDAS knowledge, but more importantly, she was intellectually curious and kept up with ongoing research, etc. So she was far more thoughtful and cautious in terms of treating DS and introducing or changing meds. I realize that implementing psych meds during or even following PANDAS medical treatment may "muddy the waters" in terms of completely addressing and/or eliminating the underlying culprit, but we chose our path because our DS was older, had been dealing with all of this longer, and wanted his functionality back almost as much as we wanted it for him. So the psych meds were an important part of that for us. If you decide to return to that route at some point, I would just encourage you to not be shy in interviewing prospective psychs; make a list of pointed questions to go in with, and get some answers. And then you and DD be proactive and participatory in any treatment you undertake in the future, rather than just accepting that because they have a certificate on their wall, they have all the answers. Clearly, they don't. As my dad used to say, "They call it 'practicing medicine' because they're practicing on US!" All the best!
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    Hi, new to the forum but have been observing for a few months. I'm in desperate need of any answers possible. My DD first started having severe OCD symptoms at the age of 7 (she's 17 now). I had no idea what caused it or what PANDAS was. Through the years she has been on every SSRI imaginable (which had very little - if any - effect on her OCD symptoms and gave her suicidal thoughts) , been through ERP and CBT, hospitalized, you name it... In late 2015, an immunologist ran several tests and diagnosed her with PANDAS. Along with the OCD and being prone to strep, she also has insomnia and sinus/breathing problems. The only advice the immunologist gave was for us to get her tonsils and adenoids removed, which we did, and DD got strep 4 times within six months of the surgery. For the past two years, I've been going through doctors trying to convince one of them that DD needs long term antibiotics (we live in a very strictly textbook, narrow-minded location). We have an appointment with a new one this week with a reputation of being progressive and his secretary told me he is familiar with PANDAS. I also recently contacted Dr. K in Chicago who told me DD would most likely benefit from IVIG. Do any of you have experience with IVIG or any words of advice? Did it provide any relief of OCD symptoms? I've read mixed reviews but am willing to try anything at this point. I'm also going to see if this new doctor can test her for Lyme. Another concern I have is that God forbid her PANDAS may have gone too long untreated and she's suffering from irreversible brain damage Sorry for such a big post I am just at loss at what to do here.
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    Antibiotic for the sinus rinse - our ENT chose cleocin gel 1%. It comes in a tube. I suppose the gel is a better choice than trying to do it with a capsule. Cleocin is clindamycin, good for strep. (My kiddo has high strep titers, though I suppose there could be something else in his sinuses like mycoplamsa, in which case clindamycin wouldn't do much, I think.)
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    -One concern I had with IVIG is the fact it has donor elements and I'm afraid it could transfer a virus or some illness not found to DD. Am I being paranoid about that? Glad to hear it helped your DS! -My DD skin picks as well but Drs said it's just a tic/habit, don't think her's is a compulsion. Thank you very much for your response!
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    With a history of sinus issues, I will second the recommendation to get that looked at. After three yrs of antibiotics and several months of IVIg (and then a T&A), strep titers still high, we finally got around to a sinus CT. The report did not indicate infection really, but the doc showed me on the CT itself where it looked like there may be infection. We will now be attempting to treat that - not sure what the path will look like except that we are starting off with antibiotic in sinus rinse. I'm hopeful this could be the key we have been missing for so long, infection that oral antibiotics couldn't reach. Or it might be another dead end, but I'll chose hope instead. We found IVIg to be helpful for other symptoms (attention and so forth), just not the OCD. I don't regret the IVIg and I can imagine a situation where we may do more once we are confident we have dealt with the sinuses. I wish we had done the CT earlier as I'm having a "well duh" moment, but it really was not obvious. Mild post-nasal drip is his only symptom. Possible infection in the sinuses fits well with the theory that problematic antibodies cross over into the brain via the olfactory bulb.
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    What ^^ said. DS17 showed symptoms at around age 8 (hindsight) and we didn't get PANS dx and treatment until age 14. -IVIG: we've had 2 high dose and are trying to get a 3rd approved. Son's immune system is dysregulated and he has hypogammaglobulimia (sp.) among other issues. Resetting his immune system w/IVIG has helped him. Search the boards for IVIG, there are long threads about experiences (I know, in your spare, not, time!). -Long term ABX: we just increased the dose and his current flare calmed down, has been on Augmentin for the entire -OCD: skin picking is very resistent to treatment but once his current flare calmed down a bit, the OCD subsided -Brain damage: don't know b/c he already had an underlying dx of dev.disability (cognitive), from birth. You are not alone!!
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    Hi Sorry you have not had any replies. We use Seventh Generation products and I make a lot of my own household products with them, along with Greenwise bleach alternative and essential oils. Eliminating chemical products definitely helped with both tics and OCD & general neurology
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    Interesting. If the Th17 is coming from lymphatic tissue, I suppose it's possible, except that the tonsils are not the only lymphatic tissue in the area and the tonsils aren't the only location for strep infections. There is lymphatic tissue in the sinuses as well as many other areas of the body. This might explain why T&A seems helpful for some cases of PANDAS but nowhere near all. Last I remember, the limited data indicated that T&A helps about half. T&A did not help my kiddo, though I do not regret it. I'm glad we eliminated the possibility. He recently had a sinus CT and we have an appt with ENT soon to discuss the results. Plus, it would be unsurprising to me if my kiddo had strep in the gut, where there is lymphatic tissue, though I don't quite understand how it can really hide there from antibiotics, unlike in the tonsils. Also, our doc frequently mentions that strep can be in the urinary system (bladder) as well.
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    I was wondering that as well! I am at the beginning stages of taking notes on my 11 yr old and trying to find what his tic triggers are. I have read several articles on how this diet helps the brain, so it only makes sense that there should be benefits for my son. I have been trying the diet myself to lose weight and I am encouraging him to eat the same foods. I will stay tuned to see what others are saying about it!
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    I don't think Dr. B is a lyme expert (he's not an LLMD), but I think he knows enough to test for Lyme (esp being in CT!). IMHO I would treat the Lyme (did he test for any coinfections like Babeisa or Bartonella?) before considering Rituximab. Rituximab may decrease the autoimmune response to Lyme (don't know why it wouldn't) but since it suppresses the immune system, I'm worried that won't be enough and it may make the underlying infection harder to treat in the long run. I know Prednisone (esp. long term) is contraindicated in Lyme, and I would think Rituximab would be even worse (in terms of immune suppression). If he is worse on the doxy it may be a herx, or he may not be tolerating it for other reasons. I know a LLMD could help you sort this out. Some also use herbal antibiotics. Also, if tick borne diseases are your underlying problem, treating those may be enough, w/out going down the Rituximab road.
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    I would be worried that there is still an infection, esp with the history of Lyme. I wonder if Lyme is still there (and or coinfections like Babesia or bartonella).