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  1. Hello! I’m feeling VERY alone because I haven’t seen my doctor at all since BEFORE I was diagnosed and put on an antibiotic! I have been diagnosed with adult PANDAS recently on top of a diagnosis of ADHD, anxiety, hypoglycemia, hypothyroidism, and seizures I began treatment with an antibiotic last month, but I’ve been feeling VERY introverted, irritable, and indifferent for a month now, especially. Does anyone else have these same symptoms? I want to keep to myself and only work on what I need to do most of the time and I get overwhelmed or very irritable when Im in social
  2. 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
  3. Hi all, Our daughter finished a 2-wwek course of Augmentin earlier this month -- her first treatment for possible PANDAs after a bad virus in November led to severe issues (rage, ocd, tics, night terrors, extreme transition issues, etc). We've seen fantastic improvements since then. However, her biggest daily challenge now is transitions (i.e. putting on shoes/coat, going into school, leaving the classroom to go home, hopping into/out of cars -- she has been darting/running away, hitting/biting/needing to be carried when it's time to leave). Some of these issues were midly present before
  4. Hi all, we had our first phone consultation with Dr. K on Dec. 22. Our daughter was on a 2-week duration of augmentin. while we’ve seen big improvements, we are still awaiting the detailed email Dr. K promised us the weekend following our Dec. 22 call. I’ve emailed him 5-6 times since then and have spoken to his office several times. They are apologetic and promise to speak with him. I’m at a loss here as he seems totally to be ignoring us. We’ve faxed blood work to his office too. Not a word from him. I did go ahead and set up another call with him with his office but feel really uncomfo
  5. 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 t
  6. 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
  7. 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
  8. 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...
  9. 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??
  10. 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....
  11. 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?
  12. 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
  13. Anyone with a PANDAS teen with Severe OCD? My son has been suffering with PANDAS for 5 years, he's 18 (suddenly sick at 13 with a strep infection) and now living in a residential school. I thought we were finally on the right track..he started speaking a little more, and finally is taking his antibiotics but recently he started to decline more (he's already very disabled). Now he won't leave his room, has stopped eating and can't sleep. Stands all day. I feel that he needs to be physically moved from the room..just to help him get past this point but staff are hesitant. Not sure what other opt
  14. Hi everyone, I'm looking for a PANDAS doctor in Southern California who will treat adult patients and is willing to prescribe PEX, CellCept, Immuran, Rituximab, Prednisone, in addition to IVIG and antibiotics. I'm new here. 31 year old man who fell ill with an upper respiratory infection December 2016. I recovered from the acute phase, but a set of debilitating symptoms followed: Anxiety / depression / irritability Physical fatigue and low stamina Physical weakness and malaise Increased heart rate on standing and walking Chest pain Breathlessness
  15. I posted this on the Members Introduction page, and Chemar suggested reposting it here... Interesting forum, as you specify Lyme and PANDAS. Per repeated blood work over the last decade I have both from childhood. I'm a 45 year old man, permanently disabled (so they say for 14 years), and have been on a hard-core course for Lyme for the last year. Things are looking up. First, PANDAS: (Pediatric?) Diagosed with PANDAS (along with TLD, chronic encephalitis unknown type, Asperger's, CFIDS, and many merely-descriptive diagnoses - over the course of a year at about age 30). Ask my ps
  16. Hi guys, Just a quick question as I find myself continuously fighting unnecessary objections from my parents despite a slight but significant improvement to the abx. Very stressful, it's like climbing the Great Wall of china! I've had a prior consultation with a prominent ENT who found large amounts of thick green mucus occupying my sinus cavaties. Scans are scheduled with the possibility of surgery. Here's the thing, after following Dr K's advise and responding positively to the antibiotics, I'm seeking a private T&A. I've noticed indeed that my tonsils are inflamed whic
  17. Hello everyone, my name is Arindam i have been suffering from OCD for last 8 years and always tried to find out what exactly causes the disorder and up untill now never really looked into the topic of PANDAS and how it could trigger the onset of OCD . But from what i have read i understand that PANDAS usually happens if children (ages upto 14) gets infected with group 'a' strep bacteria causing strep throats or scarlet fever which confuses their own autoimmune system to mistakenly treat a part of their brain (basal gangila) as foreign body and attacking it instead of the infection or along wi
  18. Does anyone have experience with steroid bursts? Did they work for your child?Does anyone know of hospitals that will do IVIG in Washington state?
  19. 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 sympt
  20. 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
  21. I've recently undergone some diagnostic testing for Pans/Pandas, prompted by a strong clinical history and recurrent URI's including chronic sinusitis and petrous apex effusion. The only problem is with the exception of MRI findings, I don't have a single grain of physical evidence! All tests are coming back negative for ASO, ANA, and Mycoplamsa Pneumonia IgM antibodies. I'm finding this whole process very disheartening, especially in the light of my worsening condition and making progress in finding a resolvable cause and explanation. Has anyone else had a similar experience? Does this rule o
  22. Hi guys, My kiddo was diagnosed with PANDAS in 2015. We have tried various treatments- so more effective than others- but we are still struggling. We are in Texas but are willing to go wherever to find the right doctor. I am wondering if any of you have met with either Dr. Tanya Murphy or Dr. Elizabeth Latimer, and if so, what you thought. Appreciate your feedback! Kathleen
  23. My 20-year-old daughter with autism and PANS/PANDAS has, over the last few years, shifted her I nterests back to things she enjoyed as a toddler and young child. She has a renewed interest in some of the shows she watched as a younger child, like Sesame Street or the Backyardigans. Lately she has also become interested in reading the Big Red Barn, a book we read to her often when she was about 3-6 years old. At the same time, we have seen her OCD symptoms worsen and her anxieties increase. Could it somehow be linked to a PANDAS flare? She also has Lyme, which we started treating last week wit
  24. Hello, This is my first post, but I have been lurking here since April when we started putting together that our 7 year old ds' symptoms was more than just misbehavior. Working backwards, I believe that the inciting event was over a year ago about a month before he turned 6. He was diagnosed with both strep and impetigo, had a horrible rash and was put on amoxicilan and mupirocin. The next day his behavior shifted drastically. He was not himself. I scolded him for being mean to his younger sibling and he cut off a chunk of his hair. He was in a ridiculous state after, laughing uncontrolla
  25. New to this forum. 6-year-old on Keflex since March. Is there such a thing as too much probiotic? She is tolerating Culturelle and Florastor 1x/day each for a total of 10 billion CFUs. Saw Amy Smith's talk online in which she recommends 25-50 billion to protect the gut. Could you experienced parents weigh in and share what you are doing? With gratitude...
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