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  1. My cockpit has been hijacked. Over the past few weeks we had noticed that some of my son's behavior had been unusual for him. While perplexing, we coped, help him cope, and chalked it up to adolescence, increased academic demands at school, his maturity and an increased desire to be accountable, successful, blah blah blah. When I returned from my daughter's 3 day field trip just 11 days ago I was greeted with mayhem. Sudden, acute, confusing, helpless mayhem. We limped through the weekend, and then took our son to his pediatrician first thing Monday morning, and spent half the day at Seattle Children's Hospital. While our son was deemed "safe" to go home, we had few answers... but the term PANDA was used. A complete blood workup was done, off we went...back home, with our son that was not our son. Initial blood work was "normal", though his white blood cells and platelets are low - only to indicate "not much, he is either fighting or recovering from fighting a virus". The one test we would have to wait for was called an ASO titer, to see if AJ has or has had in recent months had the strep virus. Back to PANDA....research, read, freak out...this is my absolute diagnosis of course, this had to be it. My husband and I are dumbfounded at what we read, that something like this exists. Though we are so worried, at least this must be it. The ASO titer must come back elevated to show the evidence of the strep antibodies (or something like that....basic explanation). Not so fast. We found out that the titer was normal, not elevated, no sign of the virus. My hope quickly returned to despair, and we are now forced to begin the transition from an immediate medical explanation to explore a more immediate clinical explanation and begin treatment. We have been able to scratch our way past the sometimes months long waits into one of the best pediatric psych clinics in our local area. We met with the psychiatrist yesterday, most information gathering. We are trying to get into see an immunologist, with the help of both our pediatrician and the psychiatrist as everyone agrees that this is "atypical". Two weeks ago our son was one of the stars in his class play, and now he is plagued with OCD behavior, mood swings, and is unable to even see his best friends. I am researching experts on PANS/PANDA outside our local area (Seattle) as we are desperate for the help I think we need. In my heart of hearts, there absolutely must be a medical reason for this drastic and terrible change in our son. Thank you for reading this....and I am looking for any morsel of help, and input from others that have been in the same position but have come out the other side and returned to life as you once knew it. I am filled with despair, helplessness, and total fear. I have identified a couple of doctors whose names I have seen several times with respect to PANS/PANDA....if any of you have personal experience from either of them, please help. Out of Chicago - Dr. Miroslav Kovacevic and out of Palo Alto - Dr. Margo Thienemann.
  2. For those who may be interested... http://myemail.constantcontact.com/Count-Yourself-In--Be-Part-of-the-PANDAS-PANS-Movement-.html?soid=1103470649803&aid=7V3cVvGYVeA
  3. I am looking for advice re: PANS and an exacerbation of PANS symptoms in my child. I had strep throat recently and although my son did not get the infection he developed some of the typical PANS symptoms and is clearly having a flare up. When my son has a strep infection we know to treat with 4-6 weeks of antibiotics however we do not know what to do when he is exposed to strep but is not personally ill with the infection. Wondering what has worked for others? We have started him on a course of antibiotics and have noticed dramatic improvements although we do not know if we should do the full 4-6 weeks or stop after a 10 day course. We live in a rural area in Canada and took our son Florida to be assessed and diagnosed, local doctors do not know of PANS or how to treat. We were given a great report from the FL clinic but it did not indicate how to treat a microbial excacerbation. Any advice?
  4. Today's PANDAS Network.org newsletter provides information on the NE PANS/PANDAS Conference, including speaker list, cost, and how to register! http://myemail.constantcontact.com/Registration-Now-Open-for-NE-PANS-PANDAS-Conference-.html?soid=1103470649803&aid=Qvh9RP1aZkA
  5. My 10yo daughter is currently in-patient at Nichols Cottage in White Plains and not getting much help at all with her OCD. Does anyone know of a good CBT treatment nearby either in-patient or extensive (maybe an outpatient day program?)? Thanks, Valerie
  6. Hi everyone: This is my first post and I've been searching and reading a ton of the older posts, especially regarding the Cunningham Panel test that's finally been released as a diagnostic tool. Looks like a lot of you were able to participate in the original studies too! We just got our Cunningham test back for my son and it says "likely" but I'm curious about one particular piece because we had a higher result. D1: 2000 (normal range 500-2000/mean 1056) D2: 2000 (normal range 2000-8000/mean 6000) Lyso: 80 (normal range 80-320/mean 147) Tub: 4000 (normal range 250-1000/mean 609) CaM: 151 (normal 53-130/mean 95) He was on azith for about 3 weeks when they did the blood draw - at about two weeks though, he lost the vocal tics and some major OCD issues (need for symmetry, repetitive behaviors, fingers/toes biting/picking). He still has some sensory issues (light and sounds) and anxiety. He was also tested for Lyme and it came back IGX and CDC positive on the IgM Western Blot. I'm seeing Tubulin linked to sydenham chorea but his number seems really high. Does anyone have any additional info? http://www.ncbi.nlm.nih.gov/pubmed/17513792 Thanks for any info/thoughts - Not sure that it really matters but you know how moms can be! ;-)
  7. I don't have a doctor treating me right now and am getting drastically sicker by the month. I can't hardly sleep at all even taking tons of downers but I am severely fatigued, mostly in my brain with chronic migraines. Anyways here are some things I noticed going through recent labs (within the past year): Elevated DNase (224) but normal ASO. High titers to all: Coxsackie A and B (valtrex did nothing to improve that) high titers to Myco. Pneumonia (doctor never addressed this) high titers to parvo IgG4 - low IgA2 - low Basophils - absent IgG p41 - present (western blot) IgM P39 - present (western blot) Very low NK cell count Low B cells Low NK cell activity / functioning B12 - too high (surprising) There's a lot going on with my cytokines but I cannot decipher any of that. My psych. is referring me to a neurologist who knows about neuro-inflammation so it's just me waiting to see if I am accepted. Also, right now my throat is extremely soar all the time and my mom checked my tonsils and said they were extremely huge and inflamed. Any thoughts on the labs? Thanks.
  8. For those who have had genetic testing on their children, has anyone found a gene mutation for PNKD? This gene causes a form of dyskinesia. If your child is positive for this mutation, are you doing anything to address this concern? Do you find that it relates to their behavior during a PANDAS / PANS flare? What are the behaviors your child displays during a PANDAS / PANS flare? Looking for similarities since I know PANDAS / PANS presents differently in different children. Thanks for any input!!!
  9. I am a 27 yr old female who was recently diagnosed with PANS. I also have the diagnoses of: M.E./CFS, IC, POTS, complex regional pain syndrome, GAD + treatment resistant depression, excessive daytime sleepiness + non-restorative sleep. The ocd came on suddenly in 2010 when I was around 23 or 24. It's always been magical thinking surrounding the issues with my bladder and sleep - which are both very extreme. I've been in therapy for 5 years and tried MANY medications. I am currently on: klonopin, xanax, zyprexa, bystolic, and zoloft. I have tried MAOI's, anaphranil, and other ssri's and atypical anti-psychotics. I CANNOT stop the thoughts. It is 24/7 and it keeps me from resting and sleeping - both of which I need as badly fatigued as I am. The medications make me even more fatigued and sedated. I wish to be free of this ocd but don't know what to do though I have a good neuro (he is my first neuro ever) and my psych. is more than willing to work with him. I have extreme sensitives to medication along with bizarre paradoxical reactions to them. I am also on valtrex right now for positive coxsackie A and B. Next step will be genetic testing and then hopefully IVIG. I don't know what else to do. My family (excluding my mother and brother) think I am lazy and malingering but all my life I was hard working and overachieving until I became completely bedridden in 2009. I mostly feel like my brain is rotting b/c of how fatigued I am and even though I am so sleepy, I cannot just lie down and fall asleep. OCD becomes its worst when I try to rest or sleep. I merely just wish to connect with other patients and learn as I haven't met any other CFS patients with these problems. It seems foreign to most of my online friends. Thanks, Chris
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