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Found 124 results

  1. Has anyone who belongs to UHC gotten approval for IVIg for 2018? We have tried several codes all of which have been denied and appealed. If so, would love to know codes used.
  2. 9 year old daughter is suspected to have PANS. About 2 years ago she lost her ability to write and do math and started having anxiety. We've since been on a path to determine why a healthy, A+ student all of a sudden develops a learning disability. We're in the testing phase where we are trying to get to the bottom of the cause. We are working with a Dr with no experience with PANS and we have a naturopath as well. Recent blood work came back with her ASOT at 350 and her IGE at 2600, plus deficiency in vitamin d. Her Dr. called me to tell me to put her on Vitamin D but said nothing about the high ASOT and IGE. I only noticed it when I asked for the report. I don't know much about ASO and IGE and whether I should be concerned about those levels. Should I be pushing for them to put her on antibiotics? I have no recollection of my daughter ever having physical symptoms of strep, but I know that not all people have symptoms. Any ideas?
  3. To give little history, I've been diagnosed with schizoaffective disorder, which is simply explained as bipolar and schizophrenia together. I've also had tics all my life, mostly blinking, and some OCD. Whenever I take immune boosting supplements my general feel of psychosis and irritability increases, and so does my tics. Any idea as to why? And I'm open to any recommendations on how fixing it. That's it for my question. Below are some indications for those that have the ability to do detective works. Olive leaf extract: gives me energy and temporarily cures tics. Often cause mania, anxiety, some delusional thoughts and dissociative feelings. Coconut oil and MCT oil: irritates my throat. If taken too much I get full blown symptoms of flu, even worse. Temporarily boosts energy and cause mania, but also heightens my anxiety. Cured warts on my feet. Oregano oil: made my tics worse and my head gets locked into thought loops and even with meditation my mind cannot stay clear headed for more than few seconds. This made me look at salicylate sensitivity as well as oxalates. I got a bottle of No-Nenol on the way so let's see. I have once cut out all high sal foods and cosmetics but it didn't seem to help much. But recently I've been consuming a lot of phenolic supplements and since I've cut them out my thoughts seem bit clearer. Some general main symptoms include Constant thought loops that are obsessive and unproductive, even though I frequently meditate (up to two hours daily) Tics and muscle tightening (semi involuntary) Brain fog Delusional feeling and thoughts Ultra ultra rapid cycling mood. Cocaine high - numb and no pleasure - suicidal depressed (recently okay ) Extreme sensitivity to sugar, leading to severe depression and anxiety Mild OCD Anxiety Digestion seems fine since changing my diet. Let me know your thoughts on this!
  4. wondered if anyone has a kid with Sydenham's chorea (SC) diagnosis?? my dd got her SC diagnosis confirmed by Dr. L last week. So its PANDAS along with subset of SC. We initially focused on the the Lyme before we got the PANDAS diagnosis. Not much effect on her symptoms ( cognitive decline and hearing sensitivity). We did the IVIG and saw real improvement - that was 3 months ago. not much since. We have no abx to deal with strep which is the next step wanted to see if any folks have dealt with SC and what was most useful treatment for them? I'm not sure if we have killed the lyme but we where on zithro for 6 months. Dr L does not think its Lyme said its the strep thanks
  5. Have you seen this article? https://home.liebertpub.com/news/revised-treatment-guidelines-released-for-pediatric-acute-onset-neuropsychiatric-syndrome-pans-pandas/2223
  6. Jemsek Clinic?

    has anyone been treated by Dr. J @ his clinic, going to start my DD on treatment. pls inbox me with comments..thanks much
  7. Hey, folks. First of all, I want to excuse my english. I'm a german fellow Maybe I will ramble a little bit but I hope that you will get the gist. I'm a 25 years old male from Germany who has suffered from OCD since I was approximately 3-4 years old. Basically my first memories evolve OCD. Sounds not untypical doesn't it? The reason I'm worried and want your opinion on my case is the very early onset of the OCD. I have read that OCD CAN start very early. But looking back, I wonder if OCD alone can really be that aggressive and start that early on. Furthermore, I'm aware that I had a pretty severe sore throat and a cold a few times when I was around year 1,5- 2,5. I asked my mother about that. Don't know if it was step though. As i already said, my OCD started very early with symptoms "not-right feelings", touching, compulsions to get it right (staring left right left right and so on), extreme fear of losing my parents, praying, confessing and a lot more. Can't really tell if this can be still regarded as a "normal" OCD case but what surprises me is that it was pretty intense even early on. And of course it only got worse. I somehow managed to get through kindergarten but looking back now I was always a worrywart and even at that time couldn't just be "a kid anymore". In school my BDD started. It is an OCD spectrum disorder but I really haven't seen PANDAS cases with kids that developed BDD pretty early on as well. By the time of 7 or so I was already totally consumed by OCD and BDD. Was hyperaware of my looks, thought my eyes looked weird and ugly, tried to be in control of my looks, had all sort of weird obsession ( why am i attracted to woman/ why are bodyparts attractive/ do i really love my mother/ do i really like this and that/hypermorality/hyperresponsibility and 1000 more. And i am NOT exaggerating. I really had any f*** obsession you could ever have. It's crazy. I wanted to make a really long text but I realized now that it could be summarized as. Having extremely severe OCD since early childhood/ BDD since ahe 6 or 7/ derealization since age 8 or so. The derealization isn't always there but most of the time it is there, even if it is in the background. Having symptoms of executive dysfunction: I get stuck on concepts / thoughts and have a freakishly hard time to "update" my brain. I'm on Luvox 250 mg since 2 years and since I take it regularly and don't drink alcohol my OCD/BDD/derealization have really gotten much much better. 60-70 % improvement. It is really the first time in my life where I actually can enjoy some things and am not always totaly obsessed/fixated/surpressed by worries. Sorry, lots of ramble but I just had to get it out somehow. What is your take on the situation Love from Germany Sascha <3
  8. PANDASnetwork.org is requesting input from families on our experiences with PANS/PANDAS. The results will be anonymous and PANDASnetwork is going to present the results at the Common Threads conference next week. It's a quick multiple choice type questionnaire. If interested it needs to be filled out by this Friday 3-2-18. https://www.surveymonkey.com/r/PN_CommonThreads
  9. Hallucinations, RADON?

    Our adult PANS dd is having auditory and visual hallucinations, ONLY at night, and ONLY in her lower level bedroom. These did not occur in our previous home. Our current home had very high levels of radon when we purchased it, but a mitigation system was installed. We are in the process of having it checked to see if it is working properly. So, I know hallucinations can be a part of PANDAS/PANS, but her's are ONLY at night, and have only been in this home and only in the lower level. Has anyone else had something similar going on? We've ruled out her sleep meds, as it occurs with different kinds, and usually the hallucinations don't happen until early morning. She's the "canary in a coalmine"...she has the dreaded HLA genes, so I'm wondering about other toxins. We're pretty sure there is no mold down there, as mold usually causes her migraines and vomiting, for days, and this is not occurring. Anyone else dealing with PANDAS/PANS in a high radon area?
  10. My son E., has PANDAS and is almost 6 months status post IVIG treatment. We were advised by the treating Physician that E. should have a tonsillectomy and adenoidectomy at 3 months, but could not find a supportive ENT to do this. We are still looking. Has anyone had their children undergo these procedures for the treatment of PANDAS? If so, what were the outcomes? Thanks
  11. Hi all, My four and a half year old daughter finished a two week prescription Augmentin on Friday night. The improvements we saw in her during that 2 weeks were incredible -- sleeping in own bed 11-12 hours a night (vs. night terrors, or waking up multiple times each night, needing us to sleep in with her, etc), nonexistent rage (vs. daily rage, started after a virus in November), big reduction in OCD behaviors. We saw many wonderful moments of having our "daughter back." Question is, how long is typical to be on antibiotics? The last 2 nights our daughter has woken up a few times overnight. Thankfully no night terrors or screaming. But, as she just completed the antibiotic we are watching her closely for any recurrence of past issues. Is it typical for a kid her age to go on longer than 2 weeks? If she were to have another flare soon, would we expect her dr. to re-up the Augmentin or try a different approach? Thank you in advance.
  12. Hi all, My four year old daughter just started a 2-week course of Augmentin for suspected PANDAs this past Saturday. She is officially 1/4 of the way through her 2 weeks on the antibiotic. She has slept for 3 nights in a row and has stopped blinking - both of those are huge developments. But her impulse control and not listening (husband had to carry her to the car barefoot without her coat on in 8 degree weather today after a 45 min. episode leaving the neurologist) are still very very poor and affect the whole family. Dr thinks we *should* see a "significant" improvement in symptoms within 2 weeks -- so my question is, at what day on antibiotics did things start really turning around for you (if put on a 2-week course like my daughter)? Thank you so much -- Kelly
  13. Question - my ds 14 is currently in treatment for PANS/PANDAS - we are in month 2 of recovery and making progress - we are visiting family for Christmas and one of her cousins is currently being treated for a strep throat infection. We are all supposed to be staying in the same house, what precautions should we be taking?? ( even thinking about staying in a separate house). My ds is currently taking 250mg Zithro and 200 mg Minocycline daily along with 1200 mmg NAC, 2000mg D. We want to avoid having a flare...
  14. Hi all, We have our first phone consult coming up with Dr. K. Can anyone let me know what to expect from that call? How best should I prepare. We have an hour tops and I want us to be prepared as possible. Thanks in advance -- Kelly
  15. Hi everyone, My four and a half year old had a very bad virus about 5 weeks ago. Started with frequent vomiting, lethargy for 5 days, followed by diarrhea for a few days. She was in the ER to get IV fluids and IV Zofran. In the last few weeks, what started out as odd behavior/tics with tiny episodes of aggression have very quickly turned into severe fits of rage and other serious symptoms. Below is a sampling. As I wait for a return call from a PANs/PANDAs dr, thought I would ask this group your thoughts. Thank you in advance for any of your insights. Peculiar behavior Needing to get into the car on the same side Licking the walls Focus on shapes (drawn xmas tree has to be perfect triangle, could only step on the large square black tiles in airport) Had several days of eating enormous amounts of food after virus; eating appears normal again Needed to put large amounts of honey all over toast, covering the entirety of the edges and bread Complained of itches all over her body; was trying to scratch everywhere, but there didn’t appear to be anything on her. She couldn’t pinpoint where it was, but she was crying and scratching hysterically. Wouldn’t go into school because there were “too many cars” in the parking lot Overall irritability/frustration has increased Frustrated with self/others over very small things that she used to be able to handle without a problem Easily set off, then it lasts a long time to recover Quicker to yell at/push brother, less patient (if he takes a toy, for example) Transitions from one activity to another or leaving the house and hopping in car have been ongoing difficult, but are even more so now Needs to be carried more frequently, even when not especially tired Had to be carried out of school several times after not wanting to leave Has missed some school due to all of these issues, even after back to physically “healthy” after virus Personality Fewer moments of “lightness”/joy Not smiling as much during the course of a day After long sustained episode, can “switch” back to sweet/loving/calm/happy Seems to struggle especially with lots of stimulation (sounds/music/movement) Episodes scare her 19-month old brother; when we tell her, that doesn’t calm her down Sometimes says husband, brother, or I bother or hurt her when we aren’t near her More clingy than usual with husband and I Not as nice/empathetic Takes a longer time to apologize, apologies don’t seem as sincere Unpredictable as to what might upset her at a given point Doesn’t talk and use her words as much as she did before virus; nods her head more to answer a question and seems to talk like a baby from time to time This doesn’t seem like the same girl of 5 weeks ago Her “normal” personality is: fun loving, funny, sweet, great big sister, interested in various activities, loves school, happy, content. Need to constantly repeat requests/asks of her, this was an issue before virus but even more so prevalent now. 10-20 times. Sleep issues Frequent night terrors since the virus (10-12+ – takes 1 hour+ to calm her down) Thrashing, screaming, fear, not identifying husband or me initially Regularly wakes up throughout the night, even if no night terror Sometimes calls out “no!” during sleep Harder to put to sleep, wants husband or I to sleep through night with her Overall much less nightly sleep than before the virus Generally seems exhausted Have tried: earlier bedtimes, reading more books, spending more quality 1:1 time at night with her, lavender scents in room for relaxation, gently body massage after baths, setting calm atmosphere before bedtime Tics Eye blinking (present before virus; but ongoing) Throat clearing (present before virus; but ongoing) Excessive sniffling (seems new; but ongoing) Aggression/physical lashing out (all new to our daughter) Biting husband and I (I have a large bruise from a hard bite through sweater) Biting her own hands, clothing Biting furniture Hitting/kicking husband and I, walls Banging headboard of bed, on floors, on walls Head butting us Thrashing body on carpet Sustained screaming at top of lungs (upwards of 40 min) – she looks afraid Pupils seems to be enlarged during fits, but it is hard to tell with her dark eye color Throwing shoes, pillows off couch, overturning cushions Ripping tape off of boxes Slamming doors Quickly running/darting into mudroom while screaming Doesn’t seem to comprehend when there’s been a big aggressive event Our primary concern is keeping her physically safe during fits of rage, but coming closer to her seems to enrage her more
  16. Recovery Time

    Question - how long does it take to recover from PANS/PANDAS? I know every case is different, but just try to gauge where my dd is in her recovery . She just started 2nd month of treatment(abx &herbs) -headaches & light sensitivity have gone but still has hearing sensitivity & cognitive issues. We believe it was 7 months from her exposure to the time we started treatment....
  17. dd - officially diagnosed with PANS ( combo of lyme exposure, & strep) current daily regime - zithrox 250mg, minocyline 100mg, 1000mg D3, magnesium , NAC (1200mg) , probiotic, herbals - she has extreme sound sensitivity - looking for some good treatments (homeopathic & others) to give her some relief, any suggestions??
  18. my 14 yr old dd - officially diagnosed with PANS ( combo of lyme exposure, & strep) we are in week 3 of treatment (we along with our provider suspected is was PANS)- daily regime - zithrox 250mg, minocyline 100mg, 1000mg D3, probiotic, herbals - TBB plus & OPC Our provider doesn't believe in steroids, so we are this course for now. We are new to the PANS/PANDAS ( 3 months to get to this diagnosis) - we've heard about other treatment options - just wanted to get others opinions thanks
  19. My son (11 w/sever autism) has been treated for PANs for two years with antibiotics by an immunologist at MGH. Recently his symptoms worsened with increased anxiety, ocd, aggression, and a new tic disorder. Can anyone recommend doctors in New England who could treat a child like my son? We're feeling quite desperate. Thanks!
  20. my 14 yr old currently taking abx to begin recovery from PANS, we are just in week 3. believe she was exposed in March 2017 - we notice axniety, then buy July morphed in light and sound sensitivity, memory issues and finally cognitive regression and migraines.We've had MRI, EGG, etc all negative. Most concerning thing is seems like she has "forgot" how to read?? Anyone had similar experience? Will she remember how to read once she gets better or will she have to re-learn
  21. my daughter is being treated for PANS/PANDAS - combination of zithromax (25mg) & minocyline (100mg) daily, NP Kayleen Clute is working with us. question - has anyone had expeience using TBB plus or OPC?
  22. Hi all, I am new here and this is the first time I've posted... worried and seeking answers. I am pretty certain our DD 10 is coping with PANS and has been for three years now. We live in Ohio and are waiting to schedule an appt. with Dr. Carine to get a confirmation (sent the paperwork yesterday.) Our girl is sick now (or flaring), though, and I am trying to decide if I should wait to see someone at Dr. Carine's office (which could be weeks still) or if I should push it at our own pediatrician's... Have not had much luck getting them to take my concerns seriously so far. They did a strep swab last week and it was negative, but she's complaining of nausea, has diarrhea, a low grade fever, and is crazy pale. Her face also looks swollen to me and she says it hurts. Dark circles under her eyes, also. I hate seeing her feeling so lousy, but if the swab is negative I'm not sure what else to ask for. She presents atypically for strep, and we recently pulled her from school to do HBI after a long bout of school refusal that started with mycoplasma in September. Thanks for any help.
  23. 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
  24. Life!

    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.
  25. Hey all, Just a quick question regarding the nature and scope of tic behaviours, and their necessity to making a diagnosis of PANS/PANDAS. With regards to possible movement disorder, over the years I've exhibited a few embarrassing behaviours (mostly self injurious) such as hand biting and clenching the muscles in the throat. I've heard that the distinction between stereotype behaviours and tics are that the former are more habit forming and suppressible, and the latter have the quality of a preminotory urge and are only temporarily suppressible. Another troubling episodic symptom I've experienced (and quite frightening) particularly in stressful times, is that I will feel this wavy sensation behind my eyes (in my head) which will result in an unfocused staring spell (trance) lasting several seconds. I am conscious whilst this occurs, although inattentive, with the exclusion of sight from immediate awareness and it's not suppressible. Could this constitute a tic by definition? Is this inclusive to PANS and has anyone else experienced similar? Apart from this I can't remember ever displaying conventional motor or phonic tics, I just wondered if they were absolutely necessary in diagnosis? Hopefully pursuing treatment soon
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