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  1. Hi there. I'm a 24 year old undergraduate student. I've struggled with OCD and ADHD since childhood, but ~two years ago new symptoms appeared and the severity spiked, all very suddenly, and I've been basically non-functional since. Looking for other students to talk to for support. It's been difficult for me to find anyone who can relate to what I'm going through, especially near my age. I am currently in my 7th (yes, 7th) year of undergrad. I received one degree, but I am going for something completely different now. However, I'm struggling, and I don't know if I should keep trying, tak
  2. Very recently I received an 'antibiotic challenge' reccomendation as a diagnostic measure for PANDAS, Augmentin 875mg (14 days) was recommended from a private consult. Henceforth, I went forward to my G.P with an honest account of suspicion for PANDAS as well as the possibility of active infection(s)- relating to sinus and chest. With some skepticism I managed a kind referral but only a 7 day course of amoxicillin 500mg - 3rd day in. My question is : Is this likely to be effective or sufficient in relieving or indicating my condition? I've have noticed some minor side effects including stomac
  3. Hello Everyone, My 7 year old over the span of 2 days started exhibiting multiple tics. We went online and found info about pandas. She was put onto a 5 day dose of Zithromax and after 4 days was almost tic and symptom free. After the course the tics returned. We returned to a pediatrician yesterday and she is still testing positive for strep. We are now on clavulin (amoxicillin and clavulanate) and after first dose tics seem worst. Does it usually take some time to see results? Does anyone on here have any anecdotal advice for us? worried parents,
  4. Hi All, I have a quick question regarding anorexia presenting as a possible symptom of Pans/Pandas. My anorexia appears to be non-specific, i.e not fuelled by any underlying psychological motive. Is this presentation typical of Pandas/pans? I've heard of the classic type associated with body image distortion - nervosa. There is also a type characterised by a "fear of choking" which I'm sure is relevant in the context of OCD. But for me there seems to be no underlying reason, it's as plain as simply going off my food. It sounds non-sensical; if anything I have a fear of looking too thin. a
  5. Hi- this is my first post on this forum though I've been reading and following to try to figure out the puzzle of my my son's behaviors. He's 9 and was diagnosed with ADHD and anxiety, and sensory processing disorder with a neuopsych when he was 6 though behaviors had been around for many years starting around age 2. He was also diagnosed with Periodic Limb Movement Disorder at age 6 after a sleep study. Recently he has shown new "tic" behaviors like repeating swear words words over and over (under his breath) and making repetitive sounds. We are seeing a new doctor and he ordered a test for
  6. I'm looking into getting on a better probiotic (the one I'm currently on is not very strong) but I have a couple of questions: I want to get a pandas/pans friendly probiotic and I have read that it is important to avoid strains of streptococcus... does this include all strains? One of the probiotics I was looking into only contains one streptococcus strain and it is streptococcus thermophilus... not sure if this is okay? Is there anything else I should know about probiotics and choosing the right one? I have been sensitive to previous probiotics in the past but I seem to be much le
  7. Obviously going to speak to our daughter's doctors, but our next appointment to go over lab results isn't for a month. Wondering if anyone has any knowledge of IGG2 or Pneumocococcus IgG antibody serotype labs?? Her IGG2 is low and 11 of the 23 serotypes are low. She is 6 years old. She recently received a PANDAS diagnosis and is on antibiotic treatment and naproxen. She had high DNASE B and Anti-Streptolysin O in January. Both have since returned to normal range. She has had multiple positive strep cultures, and many recurrent infections over the years. Thanks!
  8. Anybody else's kid start with a dx of PANDAS at a young age and now meets criteria for TS? My son was dx with PANDAS at 2-3, after a months-long strep infection that refused to die until we had done 3 different oral abx, abx shots, and a tonsillectomy. Classic sudden-onset tics, OCD, anorexia, crazy behavior. We thought he was growing out of it (less frequent episodes, with less extreme behavior.) But now he's 8, and his (mild) tics have been present on and off for about a year, and in hindsight I've realized that what is likely AD/HD started creeping in last fall (yet to get an official
  9. I could really use some input (brand new here). DS (7) was diagnosed by a neuropsychiatrist with PANS this past summer. With a letter from the M.D. I was able to secure a 504 (OHI). 1st semester went well, dsl was notably inattentive but received all A's. Second semester he had flu and attentiveness started declining. In 504 it is written to allow for breaks,extended test times,etc. He still managed to get A's/B's but attentiveness was still an issue. School now wants to do an evaluation for possible iep. I am seriously wandering whether or not to move forward with an evaluation. School distri
  10. This blog is wonderful! Great PANDAS/PANS article to read and share. https://walkinginquicksand.com/2017/04/19/what-you-should-know-if-youve-ever-wondered-if-your-child-had-pandas-or-pans-even-if-your-doctor-ruled-it-out/
  11. Hello everyone, my 21-year-old brother was diagnosed with PANDAS shortly before his 18th birthday, and he also has a past history of Lyme disease. He has been in and out of the hospital and psych wards over the past several years and often unable to care for himself and in a psychotic state. I know that there is toxic mold in the home where he has lived his entire life and recently he went to stay with his older sister for a week and saw some small improvements (was able to eat, carry on some conversation, etc.) but when he returned to his home with my parents and two other brothers he grew in
  12. 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.
  13. 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 anyon
  14. 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
  15. 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 hyp
  16. 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!
  17. 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 p
  18. 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 Hi
  19. I've read on this forum that candida overgrowth can cause behavioral and psychiatric flare symptoms that can be mistaken for a typical PANDAS. And now, after several of these flares I'm starting to think what I thought of as PANDAS has really been Candida all along, or at least on several occasions. Questions-- 1) what are the behavioral/psychiatric symptoms associated with candida overgrowth? are they different than a strep induced PANDAS flare? 2) from my description, do you think she has candida, if not, what else could it be? 3) any treatment recommendations for candida overgro
  20. 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
  21. 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 ca
  22. Hello, I'm looking for advice about my 5 year old daughter. We are trying to determine if she is having behavioral issues or if she could have PANDAS. As a little background, she has had recurrent throat infections (many times strep, sometimes not conclusive) for the past couple years. Her tonsils have been very enlarged for about a year, and she is having them removed next month. She has also been diagnosed with autoimmune hives that have covered her body (they do respond to antihistamines) for about a year. She also has a history of having behavioral reactions to artificial food dye, and
  23. 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 patt
  24. Hello, I'm writing on behalf of my friend whose son 11yo has severe tourette's and ADHD. He's been on all kinds of medication, vitamins and supplements, but none of them has worked on him. The devastated mom recently heard about PANDAS, and her son's pediatrician is skeptical about it(=doesn't know much about it), so she is in a search for a doctor who can test and treat PANDAS in Wilmington NC or somewhere near around. Does anybody have a recommendation? Thank you!!!
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