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  1. 3 points
    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 points
    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 ;-).
  3. 2 points
    dreamingpanda

    Recovery Time

    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.
  4. 2 points
    If the antibiotic schedule is a treatment for Lyme Disease, then minocycline or doxycycline are effective at reducing bacteria counts however they also create a significant amount of round-body forms or "persisters". The medical community splits here with the IDSA camp saying these persisters are not a risk, and the ILADS camp saying these persisters are the cause of ongoing disease. You will need to make a decision and choose a side. If you think the persisters are a risk, ask your doctor about using a therapy that incorporates antibiotics known to eliminate round-body forms of borrelia, such as Flagyl. Here are some links that may be helpful: http://columbia-lyme.org/patients/ld_chronic.html https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4373819/
  5. 2 points
    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.
  6. 2 points
    MomWithOCDSon

    Help with meltdowns/mood lability

    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!
  7. 2 points
    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.
  8. 2 points
    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
  9. 2 points
    jan251

    IVIG for untreated PANDAS

    Skin picking, trichotillomania, is indeed a common type of compulsion/OCD. Even if it's a tic, tics are likewise symptoms of PANS/PANDAS.
  10. 2 points
    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!!!
  11. 2 points
    castrum

    question for juwayriyah

    Hi Nrr Here is a site where you can buy Clerodendrum Inermis in USA http://www.kartuz.com/p/90153/Volkameria+inermis.html I`ll wait it help you.
  12. 2 points
    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.
  13. 2 points
  14. 2 points
    nrr

    question for juwayriyah

    Does anybody have any advice on how to get this plant in the US and also, if it will grow on the east coast where we sometimes have long winters. Will it grow indoors?
  15. 2 points
    gpookie

    LD vs HD IVIG

    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.
  16. 2 points
    gpookie

    LD vs HD IVIG

    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.
  17. 2 points
    jan251

    NEW PANS TREATMENT GUIDELINES

    Table and Text Excerpt from: “Treatment of Pediatric Acute-onset Neuropsychiatric Syndrome (PANS)” SE Swedo (NIMH), J Frankovich (Stanford), TK Murphy (Univ S Florida) In press, Journal of Child & Adolescent Psychopharmacology https://www.pandasppn.org/wp-content/uploads/2017/05/PANS-Clinical-Care-Standards-for-Use-of-IVIG.pdf
  18. 2 points
    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
  19. 1 point
    MomWithOCDSon

    Recovery Time

    I'll offer that the younger the child and the quicker the proper diagnosis and treatment, the quicker the recovery. At least, that's my long-term impression from participating here and other support groups/forums over the last several years. Conversely, in kids who go longer without the "catch" and/or are older by the time PANDAs treatment is made available, the harder it is for them to "snap back." Kind of like a rubber band; newer, tighter ones tend to snap back to their original shape, even if they get stretched out a few times. But older ones lose some of their elasticity over time and can even become brittle so, like bobh said, they might only come back to 90% of their original size/shape or, in the most unfortunate/complex cases, they might even become brittle enough to break. But even with what may appear to be a full or nearly full recovery, I do think you will want to remain mindful and vigilant for subsequent flares. More often than not, they're part of the package for a kid who's immune system is predisposed to dysfunction. Employing prophylactic measures should prevent those from becoming full-on "episodes," but they don't always fully offset the new immune injury. Good luck!
  20. 1 point
    bobh

    Muscle Twitches?

    Sounds (from this distance) like tics. My son had plenty of weird (choreiform) movements, but no real tics (in my opinion). Can you find a PANDAS/PANS expert in your area? There is a list here: http://www.pandasnetwork.org/research-resources/us-providers/ Even if the symptoms seem tolerable now, I would (if doing it again) start down this road of getting a specialist lined up right away, rather than wait and second-guess.
  21. 1 point
    MomWithOCDSon

    what is next best anti-inflammatory?

    We never tried dao histamine blocker, but I can speak in the affirmative with regard to quercitin; really seems to help with really no side effects at all. In fact, DS and I both had been taking it for years (DS is a junior in college now), and when I ran out a few months ago and DS was away at school, I decided to just let it go and stop taking it. After my mold allergy started ramping up, however, and I couldn't get relief from Zyrtec or any other typical OTC measure, I went back to taking quercitin, and within about a week, I had significant relief. Great stuff! We like the "QBC Complex" from SolaRay as it also has Vitamin C and bromelaine, along with the quercitin.
  22. 1 point
    SurfMom

    Has anyone dealt with Catatonia?

    Magilu, my child has presented very, very similarly to the original poster. Please let me know how I can help: Strep triggered autoimmune encephalitis is the umbrella diagnosis - informally PANDAS. Sub diagnoses include Sydenham's chorea, catatonia, OCD, etc. My daughter had a most severe case including TWO years of catatonia - sometimes even waxy catatonia. Her treatments included IVIG monthly, 6 mos rituximab (failed), 9 mos cytoxan (failed), finally after five years sucess and almost full remission with tociluzimab. Her catatonia also involved anorexia, bed wetting, and even raging at times. I know that each of our kids presents differently, but I do have a lot of experience with catatonic symptoms. For two years she was either in bed or slumped over in a chair. I had to bathe her and at times even get her to the bathroom. It was devastating, but the good news is that she came back from a vitually vegetative state and starting college in January. Meds (at different times) to address the catatonia was primarily Ativan (lorazepam) and risperidone. She improved slowly on these meds but it was the tociluzimab that brought her back to near normal after five years of all the symptoms your child had (and more) including high DNase titers, etc. If my child improved, you have every reason to belive your child will too! See my recent update post for more details on her recovery. You are more than welcome to PM me.
  23. 1 point
    I totally agree with your assessment - it is most likely instance of labeling a set of behaviors without looking at the cause. Many diagnosed with PDA syndrome share similar characteristics of those diagnosed with PANDAS - high anxiety, school refusal, PDD-NOS. Is PDA syndrome really describing a manifestation of auto immune disorder? I would say very possibly. Truthfully, to me, the value is not in the label of PDA syndrome but rather in the strategies that have been identified to help those with the presentation similar to PANDAS - namely the high anxiety and school refusal. Because not only do we battle in treating the auto immune disorder, we battle with its presentation. And to me, the latter is actually the harder of the two battles. It is already tough to deal with the high anxiety/school refusal, but it is even worse when the prescribed strategies don't seem to work AT ALL. But what they have determined with PDA syndrome is that normal strategies DO NOT WORK FOR THIS KIDS. To me, this is huge! This so correlates with our experience! So now we might have some better ways to deal with the presentations! Some insight on to what is really going on and HOW TO DEAL WITH IT! In the UK, where the PDA syndrome diagnosis is widely accepted, there are actually schools to deal solely with children with PDA. (But on the flip side, these kids may never get the real help for the root cause of their issues). I am currently reading Understanding Pathological Demand Avoidance Syndrome in Children by Phil Christie, et al. Anyway, I just thought I would share . . sorry about the weird spaces and punctuations but I am doing this without my glasses on, which really isn't the best idea.
  24. 1 point
    bigmighty

    PANDAS teen with severe OCD

    I am so sorry. DS's long-lasting remission came from a 3-week steroid taper coupled with augmentin 875 2x daily. At first, he got a bit worse, then remission came two months after the taper ended. He remains on antibiotics and turmeric. Would he be willing to try steroids? Clearly needs to reduce brain inflammation. Again, terribly sorry.
  25. 1 point
    dasu

    7 years of PANDAS

    You have a heartwrenching story. I do understand the feeling of wanting to give up. This torture goes on for years, it seems that most of the health care industry, insurers and even friends and family are fighting against appropriate care. It seems there are few success stories. I totally agree - you are not a failure as a parent. You sound like you have poured all of yourself out into the bottom-less pit of PANDAS. I hope that you can find some rest and comfort in this time and that your daughter can one day find recovery.
  26. 1 point
    bobh

    Has Homeopathy worked?

    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?"
  27. 1 point
    bobh

    Psychosis or PANDAS/PANS/OCD

    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 .
  28. 1 point
    MomWithOCDSon

    IVIG for untreated PANDAS

    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!
  29. 1 point
    OCDandPANDASmama

    IVIG for untreated PANDAS

    -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!
  30. 1 point
    Chemar

    Cleaning brands?

    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
  31. 1 point
    CherylN

    Tics Caused by Zoloft??

    Thank you MKW It has been a few weeks since I posted last ---June 27th till today July 15. I must say I am so excited to report that I have gotten my sons dose of zoloft slowly cut down to half and as of two days ago he has not had a visible tic. IT HAD TO BE THE ZOLOFT. I have also purchased some oils from young living that were suggested by someone on a blog out there on the internet. I spent more than I wanted to --but they came today. If his tic returns --and hopefully they won't I will try the oils as I was hopeful when reading the blog that they would be helpful. I would definitely take him off that zoloft if you have not already!
  32. 1 point
    Wombat140 - yes, I've dealt with this too (especially fear of the color red, which is my favorite color)! If u can't go down the med route, I'd highly suggest treatment with a therapist trained in ERP (exposure response prevention).
  33. 1 point
    Thank you once Bob, that's very kind of you in light of the situation. Unfortunately, I don't have the familial support to truly rally the cause. I've tried so desperately hard to educate them, but they seem to be obsessed with physical markers more so than any concern for my set of symptoms - despite giving them plenty of information and the word of Dr K. They'd be much happier to write it out completely and continue to send me to psych - being reluctant to go the extra mile to confirm diagnosis. It's very frustrating when you find yourself talking to brick walls - that can drive you crazy! Obviously, being a student I rely heavily on them funding the necessary arrangements. At the very least they will talk to Dr K, it still doesn't help that the bloods continually test negative even if I was only able to test for the few available - not the whole breadth indicated. At the moment, I am very congested! so hopefully a visit to the ENT will do good. Even when I mention to them the neurology reports indicating 'chronic' sinusitis, they dispute it on the grounds that I'm not pain. I certainly don't want this to be place to 'moan' or complain about my situation, but it is bad. I wasn't diagnosed with anything up until 18 whilst actively seeking professional opinion, before that my behaviour was seen as 'just bad, being lazy or not wanting to anything for myself'. But before the mention of travel, they were very happy to accommodate the opinions and the need for antibiotics. So honestly, as hopeless, isolated and dysfunctional as I feel at this point in time, hopefully Dr K can convince them the need for follow up. Still, I would love to clear my sinuses and respond to the medication advised. I can't see much benefit from a system that has followed me with effect for several years now. If I do find myself traveling there for any reason I will give you let you know, it's always nice to meet family's and people who can share similar experiences. ASD, ADHD, OCD are my labels but they certainly can't tell you the story of my life in the way PANDAS can. Thanks once again. These next few months will probably be hard, but as for any and everyone on this board, all we can do is fight for our health and search for the answers that actually mean something.
  34. 1 point
    Sheila

    Tics Caused by Zoloft??

    Hi mkwgbennett and welcome to the forums. I was waiting to see if any members had this experience with Zoloft before responding. But it did not surprise me when I saw your note. Zoloft is a drug that has helped many people but can also cause a range of unwanted neurological responses (among other types of potential side effects). It can also require care when weaning off of it. Take a look at this list of side effects linked below. It includes convulsions and "muscle spasm or jerking of all extremities." The incidence of convulsions is considered uncommon and the incidence of the jerking and spasms unknown. But it can happen. The huge list of negative side-effects is pretty sobering. https://www.drugs.com/sfx/zoloft-side-effects.html Your child may be among those who have an adverse reaction to Zoloft. What is happening right now? Did the doctor get back in touch and change the approach? We would like to help in any way we can. Hang in there--you should be able to address this.
  35. 1 point
    My son has been on Zithromax for over a year (500mg 3x a week) and his Dr. wants him to be on it until he has and adult immune system. We have discovered that when he goes off the antibiotics, he starts to relapse.
  36. 1 point
    laure

    Lyme and IVIG

    You should absolutely address Lyme and coinfections before beginning IVIG, especially if you are paying out of pocket. You may, like so many others, find that your son needs 3 or more rounds of IVIG, and those still may not be effective if Lyme and coinfections are playing a role. Although IVIG will boost his immune system, it can't take the place of aggressive antibiotic/anti-malarial treatment.
  37. 1 point
    gpookie

    CVID and PANS

    My kids have hypogammaglobulinemia.Long-term abx and LD IVIG.
  38. 1 point
    moose_man22

    Medicinal cannabis / CBD oil?

    Hi sahm, is the Charlotte's web oil hemp oil or CBD/cannabis oil do you know? reason I ask is that you can get Charlotte's web oil in Australia online. However, you cannot legally buy CBD oil legally in Australia yet, so I am wondering if it is hemp seed oil?
  39. 1 point
    JenniferG

    LD vs HD IVIG

    In a way, it's relieving to know why they are always sick. But, now, to make the decision as to which IVIG route to take is making us crazy.
  40. 1 point
    gpookie

    LD vs HD IVIG

    We did 2 rounds. Yes, less suck and when they do get sick, they just get normalkidsick....
  41. 1 point
    My kids are only 10 and 9. They've been on abx combo since 2013. They may need then until they are 21.
  42. 1 point
    An update, things seemed to have settled down. Two Activated Charcoal caps before bed seem to completely stop the nightmares and finally getting good sleep. Maybe just getting used to the abx or no longer flaring, not sure, but the 2 caps before bed can't hurt.
  43. 1 point
    I don't know how to distinguish between either flare getting worse, and "bad psychological effects" from zith, and herx. I feel a little more comfortable separating out allergic reactions to meds (because they are less like PANDAS/PANS flare symptoms) - and allergic reaction would be an important reason to stop the zith right away. My bias is that it might be herx, and therefore to wait it out, perhaps lower the dose if its too hard to take. For my own kid, I don't like to pile on other detoxing ideas for the first time, because you never know if he is having some reaction to those (I thought my kid got worse on charcoal when we first tried it, but can't be sure). Do let us know how it goes.
  44. 1 point
    Lyn

    question for juwayriyah

    HI Joyle, I've been following you trying to source this plant and am v happy that you've been able to get one. Im also in Australia and would love to get hold of this plant to see if it can help my son with his tics. how are you going with dosages etc. Is it still working?? Are you able to give me the details of the nursery where you bought this please? Thankyou Lyn
  45. 1 point
    Wombat140

    Favourite sugar-free recipes

    I'll start: Baked banana pudding This isn't the same pudding that's sometimes called "baked bananas" - it's somewhere between that and bread and butter pudding. A hot pudding made in ten minutes, and it's good for you. These instructions look more complicated written down than they are to do. It has to be said that the result looks like something scraped out of the bin. This is normal, and it doesn't taste like it at all! (It looks more appetising once it's got yoghurt and jam on top.) Ingredients Quantities depend on the size of your ovenproof dish, these are for ours which is about 7 inches and makes enough for 3 people. 2 or 3 slices of wholemeal bread 1 or 2 bananas - should be thoroughly ripe, in fact this is a good use for slightly overripe bananas, though preferably not actually going mushy. 1 teaspoonful of mixed spice 1 dessertspoonful of raisins Milk Plain yoghurt and sugar-free jam for topping. Cut bread into fingers - cut each slice in half and each half in thirds. Line an oven-proof bowl with the pieces. Sprinkle with spice and raisins. Cut bananas into halves or thirds (depending on size), then halve each piece lengthways. Lay them flat on top of the bread. Pour on some milk - half or quarter of a pint, maybe, not sure. Bake in a medium oven for maybe 20 or 30 minutes, check from time to time to see that any sticking-up edges of the bread aren't burning too much, until it looks done. Serve with milk (the first lot of milk will all have evaporated or been absorbed by now) and yoghurt and a spoonful of jam on top. Note on sugar-free jam It's worth seeking out the kind sweetened only with fruit juice, e.g. Whole Earth or Meridian, which is labelled "Pure fruit spread" because it can't technically be sold as "jam" (at least not in this country). You probably still shouldn't go too overboard with it, as it has a fair bit of concentrated fruit sugar, but I assume it's not as bad as ordinary jam and it's worth getting just for the taste. Since they can't bulk it out with sugar, it's impossible to skimp on the fruit, so that it tastes more fruity than any ordinary jam I've ever had. I don't know why more people don't know about this!
  46. 1 point
    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).
  47. 1 point
    Hi, My daughter is being treated by Kayleen and we like her very much. Feel free to pm me if you have specific questions. Heather
  48. 1 point
    JPDad, Coincidentally this post just came up on Dr. T's FB concerning what appears to be an adult with coxsackie. It seems to indicate antivirals could be helpful: "Got the best news EVER tonight!!! I was contacted by Dr. T. My labs show Mycoplasma consistent or chronic infection. Pneumococcal titers are high although I have never had the pneumonia vaccine??, There is persistent evidence of Coxasackie A titers which is rare in adults. This is a known trigger of PANS. Dr. T has a reasonable suspicion that...there was an active or chronic mycoplasma and/or coxsackie infection that was activated by the live nasal influenza vaccine. It can be treated with antivirals and antibiotics which I will start tomorrow. I am so appreciative to Dr. T for his expertise and persistence. All these tests could have been done while at Upstate University Hospital by my team of neurologists and movement specialist through Upstate University. Their response is " I don't really buy into PANS". Their recommendations are for me to establishe care with a psychiatrist/psychologist as they may possibly by a psyhogenic disorder. ARE YOU KIDDING ME!!!! Maybe if Suny upstate did the appropriate testing they would have known the cause of my symptoms. Thank you Dr. T for thinking outside the box, giving me hope, and reassuring myself that I am not crazy!!! The movement disorder specialist and I had a heated debate about PANS and he said... " If this Dr. T can cure you I want you to walk into my office and tell me I am wrong" I indeed will do this. When the medical profession does not have answers for your ailments they are too quick to say a psychogenic etiology may be the cause!!! Thank you for all your prayers!!" Ko's Mom
  49. 1 point
    ptcgirl

    Dilated pupils

    I absolutely KNOW that my pandas 12dd has very dilated pupils during anxiety or OCD. Without a doubt. I think it is a very common phenomenon with any type of anxiety.
  50. 1 point
    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


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