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  1. Hi: I am an adult with PANDAS/PANS and am so sick, malnourished and very low in three vitamins from food restrictions, fear of meds, so not taking any. I need a doctor who will hospitalized me on a regular (non-psychiatric ward) to help me take vitamins, figure out the underlying infections, and treat my immune system problems. Currently, I am so fearful, I cannot get out of bed for the most part. I am, however, will to travel or relocate to a Northeastern city to get help. Please suggest doctors or hospitals who may be able to help me get healthy. THANK YOU!
  2. Hello, I was wondering if anyone has found any doctors who treat PANDAS into adulthood. I am a 18 y/o f so I am unable to go to pediatric specialists. All help is appreciated. I live in Southern PA, but I am open to all doctors across the US.
  3. Hi all, I have approval from Dr T to try minocycline, but was then told by his staff I'd have to visit him in person before they'd call the rx in. So, in the meantime I'm wondering if anyone knows anything about ordering minocycline online? I found many sites, and from the one below it seems to be the same rx, but for animals. The price is good - but I'm wondering if anyone has done this before? Am I crazy for considering this? Here's the site I'm looking at: http://www.allivet.com Also, here's a patent that was submitted for treating anxiety/ocd with minocycline - interesting! Has anyone tried it for their OCD/PANS? Treatment of anxiety disorders with minocycline: http://www.google.com/patents/WO2008104734A1?cl=en
  4. Hello everyone, I was originally diagnosed with PANDAS in 2004 at the age of 5. I experienced severe tics, OCD/anxiety, behavioral issues, and sleep problems. At this time, many doctors had no knowledge of this disorder, so i was prescribed both penicillin and clonidine. At the age of 12, my symptoms had almost completely disappeared. I still had all of the symptoms when first diagnosed, but not nearly as severe. I'd say my PANDAS has been in remission for a while, but recently it has come back and it is extremely severe. However, since I am no longer considered a pediatric patient, I do not know where to start or how to receive treatment. I need help and any advice would be appreciated. My parents are very conservative with money, so I do not have many options as I still live with them. Thank you for your help.
  5. We are new to PANS/PANDAS. After weeks of research I'm certain my 7 yr old son is in PANS/PANDAS flare. 18 months ago he started having frequent urination (day/night) that would come and go for no reason. He also had bet wetting. Our GP did all possible tests and discovered nothing. He's always had poor gut health and gluten/diary intolerance. Late Oct 2016 he had a strep throat (clinical diagnoses). Throat swab was never taken. Mid Nov we noticed him making facial grimaces, licking his mouth (red ring around mouth was there), super irritable, pupils dilated on and off. He also became very hyperactive especially in the evening and it became so hard to make him go to bed. He started refusing to play his piano saying it is too hard. His focus seem to deteriorate except when playing video games. Mid Jan he started vomiting, had stomach pain and headache and was very weak (no fever, no diarrhea). Both me and my husband had the same virus and similar symptoms but only for 2-3 days. The same week he started taking showers. Nothing could stop him! His symptoms were much worse in the afternoon and evening. Few days later, same symptoms came back much harder. In the ER they discovered high blood pressure and he eventually had PRES (brain seizure). We spent 11 days at he hospital and doctors discovered nothing. Unfortunately, they never tested his ASOt. His autoimmune panel was negative. At the hospital, he continued to take showers, had major fight/flight responses, felt like hot flushes. He has redness on his face on and off that looked like Lupus butterfly. He became very irritable and constipation was very bad. We went home with no answers after his blood pressure self-regulated. In the first days we noticed he started talking and singing gibberish language. I also noticed he had short term memory issue. Facial grimaces became very noticeable (eyes rolling, face twitching, tongue sticking etc.) Few days later it was like someone turned on a switch on his behavior. He started talking about suicide, not caring, he behaved like he was possessed. We were walking on eggs around him. He started having rages (run for a knife to kill me, throw chairs around the house). His strength was unbelievable during these rages that it took my 6" husband to restrain him. His voice would change and became very autocratic during these flares. He still continues to take his showers in the evening; always has to eat after that shower. He could not stand clothing on him (has to sleep naked); his always been too sensitive to clothing tags, smells etc. His pupils were very dilated during these flares. Every morning he would wake up mad. He craved sugar. He would go from depressed to full of rage. One night he was hitting a pillow for over an hour to the point his knuckles were almost bleeding. Moment he would come out of his flare, he would come to me and say "Sorry Mum I don't know why I'm doing this." The other morning I noticed he was playing piano with his fingers while sleeping. Symptoms come and go like crazy. In the meanwhile, strep was found on opening on his penis and in his stool among with 2 other aggressive food poisoning bacteria (which makes us think that was the Jan trigger while he was already in PANS flare). Stool test showed that probiotic is not even cultivating in his gut due to bacterial overgrowth. We had whole family tested and staph was found in his Dad's and Brother's sinuses. They are being treated with abx. After reading about hand writing and math skills, we checked his school agenda. (note that he always had the most beautiful handwriting a kid can have). Before he crushed mid Jan his hand writing became illegible (his teacher sent note home wondering what happened!). At the age of 5 he did grade 2-3 math (he was coded as gifted student 2 years ago). He is struggling now with basic math. He could not remember our home phone number and refuses to do any homework or reading. Is is possible this is not PANS/PANDAS??? During his acute flare, he used tons of inappropriate words and body movements making us shocked (he still occasionally does it). We changed his diet and started with everything natural to help (curcumin, 2 other probiotics, olive leaf extract, digestive enzymes, tons of chia/flex seeds etc). We also started him on antibiotics (Augmentin). He seems to be getting out of this flare now. We use melatonin in the evening which seem to calm him down and help him fall asleep. After researching and stumbling upon PANDAS (after one of nephrologist made a comment that strep might have gotten into his kidneys and caused high blood pressure and seizure), we are almost certain that he was in PANDAS flare when another 1-2 infections hit his little body and pushed him into another severe flare. His ASOt is just slightly elevated (200 upper limit, his is ~270). We are waiting for his Cunningham Panel test to come back and see what else we do now. Our GP and naturopaths are very supportive while our pediatrician (who is suppose to get us back into the system) is beyond dismissive and cold. His suggestion is to place us back in line for neuropsych (months waiting time). I have read everything I can find on PANS/PANDAS, watched videos, read stories, talked to the parents. I could not find anything else that fits all these symptoms. One things that does not fit is the high blood pressure and brain seizure. Is it possible that could happen when child is already in a flare? Is it possible that my son fits more into PANS then PANDAS? He has no food restrictions and is not clingy to me either. However some days he refuses to go to school. We cannot make him go. He cannot explain why is he taking his showers, Said he simply has to take them. Anyone out there with a similar situation? Is it possible that strep was hiding all this time in his bladder and caused on/off frequent urination, bed wetting? And when he got another strep infection in Oct, it pushed him in milder flare; Then another infection in Jan pushed him into severe flare? We live in Canada where PANS/PANDAS is not even a recognized diagnoses. When I brought it up with the ER doctor he said my son does not have it as he is not washing his hands all the time! His ped said he saw two cases in his career but also never heard about Dr. Sweedo or Cunningham panel test. He told us in the nicest possible way to suck it up and go back to routine life. We are mad, confused, scared, worried in 24/7 crises. Both me and my husband are on the edge of loosing our jobs. Any advice, personal story will help. We are fearing his next flare will be worse so IVIG is an option (we received a contact via another family who did it). Thanks all!
  6. My 5 year old is seeing a specialist in a few weeks, but her pediatrician ordered blood work on that doctor's recommendation. I'm trying to understand what the results might mean. Mycoplasma came back in normal range. ASO was 350 (lab's high was 150). Anti DNase B was 511 (lab's high was 375). She had a positive strep culture about 2 months prior (and a few more times during the past 1 1/2 years). She was on day 9 of Augmentin for a sinus infection when she had the blood work. A side note, behavior drastically improved after 24 hrs on the antibiotics. Thanks!
  7. Hi everyone, I have not posted in this forum in quite some time, mostly because my kids have been doing pretty well over the last couple of years. However, in the beginning, this forum was a lifesaver and also my link to finding other Canadian parents at that time. I hope it is permitted that I post this here and if not no hurt feelings if it is taken down.... I just wanted everyone to know that the organization PANDAS/PANS Ontario that I co-founded a few years ago is working on a petition to the Canadian Paediatric Society asking them to create a position statement and practice point for PANDAS/PANS and to make it available to their members immediately. We are really struggling still for quality care in our country and especially in Ontario. We're hoping that this will be a start to making some positive change. Please check out the link to the petition and please consider commenting about your story at the bottom and sharing it with as many people as you can. https://www.change.org/p/canadian-paediatric-society-educate-your-members-about-pandas-pans-and-help-our-children?source_location=minibar Thanks for listening! And Ontario parents...if you haven't connected with us and are looking for local support and other families from your area to discuss practitioner options and be involved in our events check us out here.... https://www.facebook.com/ppontario.org/ https://www.facebook.com/groups/pandaspansontario/ Much love...Kerry
  8. My daughter had sudden onset OCD, age 7, in September. I remember it down to the minute! Before I start, here is her infection history from 2016, all ear infections. I am waiting for her medical records. I know some of the infections she was treated with abx but for sure she was not treated with abx. on 9/15/16. It was considered viral. She also has a history of enlarged tonsils...still to this day. Also, just chronic colds, sinus infections, allergies her whole life. Just prior to onset of symptoms, I was told by our primary to send her to ENT but then all this happened! Ear Infection History 2016: 2/26/16 3/10/16 5/18/16 9/15/16 (onset of symptoms 3 days after this) Vaccines: Heb B in April 2016, July 2016. We did switch a school and she had excessive hand washing at age 5 for about 3 weeks (again, still waiting for all her medical records, I do not know if she had an infection prior to handwashing or if this is pertinent/coincidental). Not an "OCD" type symptom since then. Very social, smart kid. Loves friends. Very smart. No school problems. No defiance problems. No other diagnosis of ANY kind. An easy and fun kid! Sept 18th: (3 days after ear infection diagnosis) Hoarding (things like her bloody tissues from a bloody nose! Bringing home her milk carton from lunch and making us save it!), making parents take pictures of everything she did (including things like using the restroom, even her urine and poop!), emotional, EXTREME separation anxiety. Per her teacher, crying 8 times a day in class and saying “I miss my mommy.” Sept 22nd: First visit to a therapist who diagnosed her with "Generalized Anxiety." Sept 25th: Severe compulsions. Bordering everything, fear of contamination, isolating herself, depressed, complaining of headaches, stomach aches, hyperactive at times (like she could not sit still on a couch or had to get up and down several times when doing homework). In addition, she cannot be in a room unless her mother is present. Literally followed mother into every room. Started walking backward and doing “starting from the beginning” type rituals. She also has to do everything symmetrically. If she touched something with the right arm it had to be touched with the left arm. Still could get to school but we would be late and drop off was a nightmare. Separating from mother was very hard. Sept 26th: Took her back to the therapist (we were freaking out!) Diagnosed OCD. Sept 29th: Stayed up until 2am doing wiping, tapping, bordering rituals (this was about 6 hours worth of rituals.) If her father came close to her to try to help her, she would scream as though she was being tortured. Having fits of rage. Hyperactivity. Oct 7: . Hoarding spit in her mouth. Will not eat at school or gymnastics practice. Clenched fists ALL DAY. Sensitive to touch, sounds. If we played the radio in the car she would freak out. PLUS still all the above mentioned symptoms. Also, often times, in a "trance-like" state. Also by now she is hitting, kicking, and spitting. Also very immature behaviors. A little bit of baby talk, playing with her private parts (kinda like toddler does), sitting in childish type poses (hard to explain that unless you see...but trust me). Oct 15th: Mother now on a leave of absence from work. She would not be without me. Still could get her to school. Urinating and defecating all over the house. Extreme bathroom fears and rituals. Nov 3rd: First email to an intensive treatment program for OCD. Symptoms getting so severe. Nov 28th: First day of intensive treatment. By this point, never wear clothes unless mother dresses her, severe contamination issues. Wont bathe in a bathroom (only in the sink in the kitchen with Dawn dish soap), complex walking patterns, rituals, throat clearing tic, wont walk on carpet, has urinated on her floor in her room at least 15 times, door rituals, still has extreme rage and emotional labile, will not step on a crack....plus more. Ok, so when all this started, I looked into PANDAS. But to me, it didn't make sense. I said to myself "No history of Strep, we changed schools and she had a hand washing history for a few weeks." Fast forward to now. I will say she has made improvements for sure since we have started ERP. She eats and has conquered some of her rituals. She is now on Lexapro. But for sure OCD symptoms still remain. She wont use a restroom. She has to go outside or in a toddler potty. I spoke to the director of our program about PANDAS when we arrived, and she said "Its over diagnosed and the treatment is the same." For whatever reason last week though, I googled it. My mouth dropped. Now that I have a better timeline in place, to me this is it! It has to be! Especially ear infection 3 days prior to onset of symptoms. Her decline was so fast (which believe me, we took notice of when it was all happening but the "experts" in our lives said that it was pure OCD and nothing else.) We also did not sit around and watch this happen. She was in weekly therapy (sometimes 2 times a week). I know people who have OCD (Not the PANDAS type) can get really bad. But just 6 weeks after onset of symptoms I am looking into an intensive treatment program for my 7 year old! That's fast! We went to a doctor yesterday. Very nice and allowed me to dictate what I wanted ordered. He also says he has treated some PANDAS. But after I showed him video footage of her defiance, emotional ups and downs, crying rages, he pulled me into his office without my daughter and asked if I thought she had been abused. Actually, we did look into that when this all started and we are confident that is not the case. He suggested Art Therapy for her. Art Therapy!? He also took notice of her immaturity, impulsivity and just kinda "wacky attitude." My brother visited last week and also noticed that. She has tantrums like a 2 year old when she does not get her way. All I keep telling these people is...."THIS IS NOT MY KID!" I have an appointment with another doctor (Integrative Medicine Doctor in Irvine, Dr. K) and I have seen actually two reviews about her treatment of PANDAS and PANS and people have been happy. I don't get to see her for a couple weeks though and at least I have some labs done now (waiting for results). Here are my questions: 1. Am I on the right track? For parents with kids with diagnosed PANDAS/PANS, have you experienced a similar timeline, symptoms etc? 2. Any recommendations for doctors who know how to diagnose and treat in Southern California. But I will go anywhere. 3. Is it coincidental we changed schools and this started? (My daughter was nervous about changing schools but it was not extreme at all. In fact, she was well liked and she even knew 2 kids in her class. Teacher was very sweet) 4. Just generalized thoughts on my post. Even a personal experience or 2! Thank you for your time! I know this was a little long!
  9. Hi all, So we have used Dr. Rao in the past as a DAN doctor and had good success. This past year my 14 year old son with PDD started digressing, OCD behaviors, you all know all the symptoms. Anyway we saw Dr. Rao in November, he drew labs but before he drew the labs he suspected PANDAs. The labs show VERY high titers for almost every virus tested. HHV6, EBV, Cocksaxie, and mycoplamsma pneumonie. We started the turmeric, N-acetyl-cysteine and vitamin C and did not see any change. The next week we were to start ibuprofen, benedryl and something else (i don't remember) but it didn't do anything either. So we are going back up (didn't have money and it really STINKS that he doesn't take BC/BS) but I wonder if since its viral he'll start him on anti-virals? Before we had the labs he said the next step (in PANDAS, not PANS) was going to be steroids, then IVIG and plasmapheresis. Please PM with any help at all. I'm in nursing school right now and I'm so overwhelmed with helping our son. He was doing so well until he stepped on a nail and I made the life changing call of giving him a tetanus shot. I didn't want to, but feared for his life. Also, if we do end up having to do IVIG or plasmapheresis are these procedures dangerous? Like I said I'm usually not overwhelmed but THRIVE on research but right now I'm trying to finish school so my husband can have some financial relief. Thank so much! Jana Bryan, TX **
  10. My son is 5 yrs old and 50 lbs and we've been unable to find any prescription that effectively allows him to fall asleep and/or sleep through the night. His anxiety seems to spike as bedtime approaches. We've tried ambien, doxepin, melatonin, clonazepam, clonidine, etc, but we've been wildly unsuccessful in finding the answer. We've also driven him around in the car for up to 2 hrs in an effort to get him down but nothing is working at this point. And when we do finally get him to sleep, he usually wakes up 4-5 hours later and then is up & down through morning. It seems as if he simply cannot turn his mind off at night. Does anyone have any suggestions for something that has worked well in helping young children with extremely high anxiety sleep? Thank you in advance.
  11. I apologize in advance because I know there are several similar posts. I know this because I’ve been reading the forums for a while now but I am desperately seeking guidance at this point. Prior to Labor Day of this year, our four year-old son was an extremely verbal, high-functioning 4-year-old boy with normal physical, psychological, and academic development. Then, seemingly out of nowhere, he started having terrible nightmares that eventually evolved into daytime hallucinations. He also experienced a significant regression in speech. We noticed a severe deterioration in his sleep patterns and additional changes in his behaviors and personality. He developed an ever-changing pattern of nervous tics and his regression got to the point where our son was (is) almost entirely non-verbal and is consumed by anxiety that has significantly impeded his well-being. We have to drive him around in the car at night, often for hours at a time, in an effort to calm him enough to go to sleep. I should’ve mentioned that he had strep throat in mid-August, which was treated with 10 days of amoxicillin. Although we live in northern New Jersey, we brought him to CHOP in October because of their infallible reputation for pediatric neurology. Our son has since been hospitalized at CHOP for three different stays, during which he has given more than forty different blood panels, sat through three EEGs, two MRIs, a lumbar puncture, one abdominal ultrasound, and one throat Doppler. Unfortunately, none of these tests and procedures resulted in a diagnosis for what is suddenly ailing our boy. Each attempt to determine if there is an organic, metabolic, or genetic issue has failed to produce conclusive results. In reading all of the symptoms of PANDAS/PANS, it certainly seems like this is what is plaguing our son. However, none of the extensive blood work that was done at CHOP has resulted in markers that typically indicate PANDAS/PANS. I know that this doesn’t eliminate the possibility and from what I’ve read on here, it sounds like CHOP doesn’t exactly embrace the PANDAS diagnosis. My wife is in her third trimester with our fourth child and we are at wit’s end in trying to determine what our next step should be to help treat our son. We met with Dr. Elias at Dupont in mid-December but were kind of left in limbo there. We are scheduled to go back in early February (her first available) but, as many of you know, six weeks is an eternity at this point. We feel like we are on an island and have no clue where to turn to help get him better. I’ve researched several doctors in the NY/NY/CT area (Dr T, Dr B, etc) but it seems as if every positive review is followed by a scathing one. I’m sorry for writing a novel but we are desperately in need of help. We want to help get our child the proper diagnosis, which we believe to be PANS, and get him treated aggressively and quickly. Thanks for listening.
  12. I've been conversing with a few other families off-line over the last couple of months as we prepared our DS for the transition from high school to college, and I thought I'd drop a note here in the event some others are staring down the barrel of college decision-making. I also wanted to make sure and thank a few of you who tread this ground before us -- most especially Emmalily -- and gave us some great advice! Thanks! So, for quick background, DS was likely "a PANDA" by the age of 3, but we didn't know, nor did we get any help with medical interventions, until he was 12 -- almost 13 -- and headed into 7th grade. He became so badly debilitated, however, that he went from fully functional if quirky to completely non-functional within the space of about 3 months. Finally, after almost two years of abx, lots of therapy, continued supplements, and tough love, DS returned to functional and managed to close out his senior year in high school summa cum laude. He continues to battle a degree of OCD and anxiety, particularly when under stress and/or transitioning to a new, unknown situation, but for the most part you wouldn't know he was any different from most bright, healthy kids. In our college search, thanks to some great advice by knowledgeable folks like Emmalily, we knew we wanted to find a college that: 1) offered a low average student-to-teacher ratio; 2) was within a reasonable drive from home; and 3) had a disability office that was readily accessible and pro-active, as well as, of course, offering the programs that DS wanted to study. One very valuable tool we also made use of was a chance for DS to participate in a short (3-week) summer program on a college campus the summer between his high school junior and senior years. It gave him the experience of living on a campus, keeping his own schedule, living and dining among peers, getting himself to class, etc., and we think that it had an invaluable positive impact on his confidence and coping when it came time to actually leave home for the real thing. We found his "dream school" about 1 hour away from our home with the curriculum he wanted (computer engineering). It's a smaller school with a lower student-teacher ratio (9:1) and a readily navigable campus. DS attended two, short, on-campus "readiness" events -- a scholarship weekend for interviewing for a variety of scholarships and a summer orientation session -- that once again added to his confidence that he could manage living on campus. We made advance contact with the Director of the Disability Office for the school and provided her a copy of DS's IEP as an example of the sorts of accommodations (extended time on assessments, etc.) that had contributed to his success in high school; she was very accessible and communicative and assured us that his accommodations could be met on campus via the Americans with Disabilities Act and that she would notify DS's professors. She also offered a "mentorship" program whereby DS would be "matched up" with an upper classman on campus to help him get in the swing of things. DS has had two brief subsequent one-on-one meetings with her since he's been on campus, mostly to fill her in on his classes and professors, to reconfirm which accommodations, if any, he feels he needs given the nature of the material and the teaching styles, etc. and to introduce him to his mentor. In short, she's been great -- available, but not intrusive. So, DS has been on campus since mid-August, and he's doing great! That's not to say there haven't been ups and downs . . . moments when he called me to say he didn't like this (the dorm showers) or felt uncomfortable with that (some social activities designed by his RA) . . . but he's figuring it all out. He likes his classes -- actually loves some of them -- and, knock on wood, is keeping up. He's making some friends and making peace with the parts of college/dorm life that he'd prefer weren't parts of the picture. In other words, he's adapting. Thanks again to all of you who've helped us on this journey, and here's wishing all of you happy and safe transitions as your kids continue to grow! Nancy
  13. I don’t post very much because when my twins are home from pre-school the minute I open the iPads they both grab one & jump on ABC Mouse. Background: my son is 3.5 years old he has had PDD-NOS since he was 18months maybe longer. He has a twin brother & they were initially both verbal at 16 months then one progressed verbally & social and the other had terrible diarrhea & stomach problems for many months & he then did not progress, he actually regressed for a year. I see a DAN that was in California but is now in Florida & my son is on Methyl B-12 injections, DMG, Digestive Enzymes before meals & cod liver oil & Probiotics. No dairy no wheat and limited carbohydrates is his diet. After 60 days of Methyl B-12 & DMG he began to talk, he can spell and writes things to me with his ABC sets that I bought him. He ACES the spell curriculum on ABC mouse (more than his Nuerotypical brother), but he is not social and he still vocally stims very loudly 3 times a day for an hour each time. So 3 hours a day. At that time it is very difficult to pull him out & back with us. This usually happens when people are at our house or if we are in a store. Currently he is on his 3rd round in 6 months of Fluconazole & Cefdinir. He makes big social & verbal gains when he is on this course. He can communicate better and stims a little less. Two days ago I accidental missed his Fluconazole and he had trouble communicating the next day, so now I am thinking the Fluconazole is the most helpful. Where do we take this? I need advice? IVIG? Stem Cells? Fecal transplant from brother? GcMAF? What could replace these medication rounds OR do the medication rounds sometimes help workout the problem for good? Please let me know.
  14. Hi everyone, My 9 year old DS has been treated for the past 2+ years at Stanford Children's Hospital for CVID and PANS, and by another local MD for congenital tick-borne infections (ehrlichia, babesia, and borrelia - aka Lyme). After monthly rounds of IVIG 'maintenance' doses for the past 2+ years to treat CVID and 5+ years of antibiotics to treat the tick infections, he's improved overall but had new symptoms appear that led me to ask Dr Theinemman at Stanford to consider plasmapheresis for my son during our appointment today. Those symptoms include: - self injurious behavior and aggression towards me (jumping on me and pulling me by my hair when upset/raging) - severe OCD to the point of being life threatening (obsession with public restrooms and flushing toilets - he'll race across busy streets if he sees a Starbucks where he knows there's an easily accessible bathroom, run into strangers' houses to get into their bathrooms, etc.) - severely restricted eating (no protein since sometime in late 2015) Dr Theinneman is 'on the fence' about plasmapheresis for him due to some of his underlying infections potentially still being active and causing inflammation. She is going to discuss with Dr. Frankovich and call me in a couple of days with a decision. My questions for you are this: - if your child has undergone plasmapheresis, did s/he have an active/underlying infection at the time? Did s/he also have CVID? - what was your child's response to the pheresis? If s/he improved, how long did it take to notice improvement? - if your child got worse, what symptoms got worse, and did s/he return to baseline after a period of time? - if your child got worse after the pheresis, did you pursue any other treatment options? What were they? What was the outcome? Lastly, a huge thank you for all of the prior postings on this topic! They have been very helpful :-) And, thanks in advance to those who will (hopefully) respond to this post of mine; my appreciation of the dedicated, exhausted parents and concern for their precious children cannot be adequately expressed in a post
  15. Hi, I am new here. We think my 8 year old son has had PANDAS/PANS for 5 years. I found out about PANDAS/PANS a year ago but was talked out of it by providers until earlier this summer when he flared again. He is finally being treated at MGH. So my question is what to expect now. So far this summer, he has been on amoxicillin (1.5 weeks, no effect and came down with bronchitis), ceftin (1 week no effect), ceflex (15 days no effect), and augmentin for the past 4-5 weeks (some improvement at first especially with appetite, but not sure). Because we wanted to do everything we could to improve things before school, we tried a 25 day steroid taper. we have seen really wonderful results from it up until the past couple of days. We only have 6 days left on the taper. Also, since the steroids were really interfering with his sleep we broke down and started melatonin again 4 nights ago (I had read it lowers the effectiveness of steroids). The last two days we have seen his anxiety ramping up. Any thoughts? Have we lowered the effects of the steroids with melatonin? What does it mean if he did great on steroids, but we see things creep back as he tapers off? Thanks!
  16. My daughter was diagnosed with pandas three years ago after a sudden onset of crippling OCD intrusive thoughts. She had previously had episodic stretches of eye blinking tic, urinary frequency, generalized anxiety, and some OCD tendencies but the thoughts knocked everything out of the ballpark. They came on fast and took over. AFter 5 or 6 months of we found a pans doc who put found that she'd had mono and probable Lyme (equivocal ELISA test but negative WB) and put her on ABX for many months. The thoughts disappeared and we had our daughter back - quicky but totally free of horrible obsesive thoughts of violence/sexual/social stuff. Flash forward two years. She gets abx resistant respiratory staph (along with her sister, who also had strep) and then she gets diagnosed AGAIN with mono. Exactly two months later the thoughts come roaring back like a bad dream and starts again for our family, especially me (mom) who she confesses to. No doctor could explain why my 11 year old has had mono twice in her life and her regular family practice doc says it isn't pans and that lyme docs are quacks. Great conversation we had before I took my children elsewhere. After visits to PANS psychologist and LLMD's were uncover that she is lyme positive both CDC and IGenex. IGM Bands 31 ++,39+, 41+, 83-93+, but IGG band 41++ only. HEr LLMD starts her on ABX on top of anti-inflammatories prescribed by PANS doc. (Turmeric and EPA) LLMD says we will never know how old the lyme is, though from what I read IGM means acute (not old) infection. I have so many questions. My daughter had multiple bites as a young child in the NE states and I know now they were mishandled. No prophylactic abx, improper removal of ticks (including a time I totally botched it and the head was detached). She had chronic drenching night sweats as a four year old, along with extreme night terrors and major sensory issues. She also had massive reactions to any bug bites and every summer ended up in the ER when a fly bite led to her eye swollen shut or her nose or face disfigured. She also had bites on her back that for 6 years flared up periodically. No doctor could explain it. They would be red and hot and itchy, despite being years old - this would happen every 3 months or thereabouts and came along with a deterioration in behavior. I feel intuitively and practically that this lyme is old, but I can't know for sure, according to our doctor. IF it is an infection aquired 8 years ago I worry for my daughter. I just want to understand, and I want her to be healthy. I see how tired she is, out of breath from the simplest bike ride or run or typical childhood activities. We went roller skating today and she kept collapsing next to me out of breath. Her ped. detected a bit of breathing abnormality indictative of lung inflammation but had no suggestion of what it might be due to; and suggested steroids. We did not go this route. Looking for hope, feedback, insight. I feel so sad and stressed. I live and breathe for my children. BTW her LLMD was surprised that her Igenex babesiosis was negative.
  17. Hi. I'm new to this forum. My daughter, age 10, had the flumist in the fall of 2015. It was the first time she received the vaccine via mist instead of shot. She developed severe school anxiety shortly thereafter. She developed OCD in Jan 2016. We were convinced she has PANDAS, but had a doctor who sees quite a few PANDAS patients each year rule it out (and bloodwork also confirmed no strep or history of such). The OCD, Anxiety and rage continue to get worse. She is being treated with CBT / ERP by a psychologist for the OCD and anxiety, and we are seeing a psychiatrist this week for medication. I am not sure what made me think today about the flumist in relation to this possibly being PANS, but I made the connection and wanted to see if anyone has any thoughts. Thank you!
  18. I'm new to this forum, though I've been reading avidly, trying to absorb people's experiences -- and get validation. Last week my DS16 got a new symptom that creeps him out and puzzles me. He is newly dx with PANS, and more complex symptoms than DS21, who used to get PANDAS exacerbations w/ sinusitis, (responsive to Abx (+ steroids)). Recently DS16 has got severe anxiety, panic of dark (at 16!), intense anger / emotionality, sensory intolerance (glass, ceramic, rubbery textures ..), deteriorated handwriting, and some choreiform movements. Gifted (well 2E) but w/ inexplicable terror about school since August. Last week, a week after the PANS dx, and while on Augmentin, he got a new infection, and a severe exacerbation with the sensory stuff above, plus the following neurological puzzle. We call it the reverse-phantom or 'disappearing hand': Any time he is touched unexpectedly on his arm, shoulder, back, foot..., by someone else, when he doesn't see the actor's hand NOR his own hands, his brain thinks that it must have been by his own hand(s), and so his hands must have gotten there. But since his fingers/palm didn't feel the touch they supposedy made -- suddenly they disappear from his body-schema . He KNOWS the hand is gone (so there's no point to look for it). It doesn't happen if a) he can see my hand touching his body, or he can see his hands as he gets touched, © he has his hands touching some fidget or cat... so he knows where both hands are. As you can imagine, it's pretty frightening for him. Has anyone else had this? DS16 says that even when brings up his hand, the hand "phases in and out" for a few minutes, as if his body does and then doesn't have a hand. Today a few of his fingetrtips & nails disappeared for a while, when he felt I'd stroked his back with a fingernail. Last Fri he was doing a neuropsych eval (for IEP). w/ an excellent, experienced PsychD. She siad that it's definitely neurological, maybe the temporoparietal junction (TPJ), and/or the extrastriate body area (EBA), which together process our body's sensory input and create/maintain our model of our embodied self and where all the parts are in space. Are the TPJ or EBA anywhere close to the basal ganglia, immunologically related, or connected to them? I don't know who to go to -- it sounds so weird, I'm concerned he won't be believed. A psychiatrist already wondered if he was psychotic (the PsychD laughed at that, but...I'm gun-shy). We're in the SF Bay Area.
  19. Hi. New and overwhelmed. My 4.5 YO had a sudden onset of motor and vocal tics, adhd, clumsiness, OCD, sensory stuff, sleep disturbances, tantrums after falling sick with a cough/fever Dec 2015. Pediatrician suspected PANDAS and started him on Cefdinir however ASO/DNASE negative. Symptoms improved 50% in a month however new symptoms kept emerging. We saw Dr B who ran more tests and diagnosed PANS with borderline Lyme. See Igenex and Galaxy results below. Started on Azith, Cefdinir and Malarone last week. We are seeing an increase in some symptoms (herx?) while others are in check. In hindsight, my son was bit by an insect when he was 3 but the ER doc did not think much of it and sent us home with a topical lotion. There have been symptoms (eg tantrums, meltdowns, wanting to be carried) that we chalked up to difficult boy behavior. So sad this has turned into full blown PANS. Do you think this is Lyme/PANS? I would hate to treat him with antibiotics/anti-malarial for two years if he doesn't have Lyme and we should have been looking for something else. BUT if it is Lyme then I need to toughen up and prepare for a long road ahead. Igenex Lyme: Negative overall IgM 41 IND IgG 23-25 IND, 39 IND, 41+++ B Microti IgM 20 (may or may not indicate active infection) IgG <40 Galaxy Bartonella IFA 32 (less than or equal to 32 indicates negative. Greater than 1.64 positive) All other co-infections negative. My questions are: 1. Do you think he has Lyme, Babesia, Bartonella? 2. Are there additional tests you would recommend to confirm diagnosis? 3. I keep reading that there is no cure Any stories of successfully eradicating these infections? 4. What treatments and length worked best, especially if you had a young child? 5. Should we find an integrative LLMD in addition to Dr B? Any suggestions close to NYC? Sorry for so many questions and thank you for your help! C
  20. This was just published 2/12/16 about a 14 yo girl who came down with OCD and showed high myco p titers. I don't have access to read beyond the first page, where I believe they were going to start discussing treatment. Very interesting to see publications that address PANS and attribute its cause beyond that of strep to include viruses such as Mycoplasma pneumonia. Does anyone have access to this full article? Would love to read it in its entirety. http://online.liebertpub.com/doi/abs/10.1089/cap.2015.0080?journalCode=cap
  21. Hello. I am new here. But I really need someone's advice. My daughter is 10 years old. 3 years ago my daughter started having OCD symptoms, she was washing hands a lot, and was worrying about a lot of things, she was tested positive for strep, after antibiotics she got better. Pediatrician thought she probably has Pandas. Now, about 5-6 weeks my daughter started to have anxieties at evening before she would fall asleep. She was saying that she worrying about something and she doesn't know why. Later she started having sexual thoughts about everyone she knows. (She doesn't know what sex really is, mostly her thoughts was about kissing, hugging...) This thoughts was bothering her a lot. Later she started having thoughts that she's hurting someone with knife, sister, mom, dad, friends... That was really scary, because in general she is very kind and loving So, I so it thought that Pandas came back, so we went to see a doctor. My daughter had rapid strep test that was positive, after that they did culture strep test that came negative. But she was on antibiotics for 10 days anyway. Symptoms didn't go away after antibiotics. Later we did a blood test that showed my daughter didn't have strep. That is why pediatrician didn't think my daughter has Pandas. I don't know what to think. We went to neurologist and he wanted my daughter to have MRI. Also doctor recommended to see it's a psychiatrist. But I really scared to go to psychiatrist, I am afraid that doctor will make a wrong diagnosis or will put my daughter on very strong medicine. For now I am giving my daughter vitamin B-complex, glycine, probiotics and chamomile. Also she doesn't eat sugar and caffeine. Sometimes my daughter feels normal for couple of days and then she starts having bad thoughts again. She is having irritability sometimes, and starting thinking about losing weight, and she is not fat. I Will appreciate any comments. Thank you.
  22. Hello, There is an article in the Fall 2015 issue of the trade magazine "Biosupply Trends" that summarizes PANDAS/PANS/CANS and provides highlights of some small studies that looked at efficacy of tonsil/adenoid removal versus antibiotic treatment. Interesting. Jump to page 48. http://www.bstquarterly.com/emagazine/currentissue/
  23. Does anyone know of a medical center that has all of the specialists needed to treat PANDAS / PANS under one roof? Thanks
  24. Hello, all! My son is on a very strict diet (SCD) to deal with his symptoms, tics, ocd, etc. He has come a long way but he feels isolated. Do any of you have teens who would like to communicate with him and talk about how bad sugar is, how everyone gets sicker with it, etc etc. He would love it if that person were in the NYC area. Thanks and good luck to everyone! Michael
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