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Found 133 results

  1. 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
  2. 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
  3. 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
  4. 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...
  5. 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??
  6. 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....
  7. 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?
  8. 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!
  9. 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
  10. 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
  11. 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
  12. 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.
  13. 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 out the possibility of a diagnosis of PANDAS? As I'm not directly under the care of a Pandas friendly physician in my country, all testing has been initiated privately on my behalf from first principle. But I feel like for such a strong clinical history, I'm making no progress in pursuing an effective diagnosis. Any advise is always appreciated. many thanks
  14. 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
  15. 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 with Suprax. That initially caused even higher anxiety as the infections were stirred up by the antibiotic. Has anyone seen this happen in their own children? Any thoughts people share would be very appreciated.
  16. 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 uncontrollably and inappropriately. Making crazy faces. Dark mood. Didn't seem to care about any consequences. Overtime things improved, but this winter he had multi[;e strep infections in a row and his symptoms escalated. His math skills declined, his handwriting got worse (messier and drifting). My son who is normally empathetic, kind, introspective and a rule follower, is like a different person when he's infected, he's in this state he doesn't make eye contact (he normally does in conversation), there's a sort of wild look in his eyes, has trouble managing even the smallest disappointment, increased anxiety, rages, sometimes restricted eating--says he's not hungry. Rarely eats much for breakfast. Has a fear of trying new things (even foods he's had liked before.) I could go on and on. Things have largely improved since his 3 course of amoxicillan in a row. He's had a few minor flares that we haven't been able to figure out the trigger of--allergies? overheating? his younger sibling being sick with a fever? We are awaiting his blood work and the results of his EEG, but the partial panel that we did showed elevated strep titers and the sleep study that we completed showed sleep apnea. His tonsils are constantly swollen so we are pursuing an tonsillectomy, adenoidectomy. Since his symptoms are largely better right now the neurologist we're seeing, who specializes in PANDAs, said she doesn't want to put him on a long term course of antibiotics to avoid him developing a resistance but I'm worried about him not having antibiotics before and after the surgery. If you have pursued the T&A procedure, can you please share what you did re: antibiotics? And anything else you wish you had known when you started this journey. Thank you for taking the time to read this.
  17. 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...
  18. 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, take a break, give up, or what. I used to be an exceptional student. I had not gotten anything less than a 4.0 in a class after my freshman year. I struggled with OCD an ADHD then too, but not like this. I was able to manage my classes, social life, etc. Until ~2 years ago. Everything suddenly went down hill. I cannot organize my life let alone my classes. I spend more time alone in my room pulling out my hair, blinking my eyes, trying to figure out what's wrong with me (all of these I had never had problems with before), than I do studying, socializing, or enjoying myself. In the past year, I've failed two classes and gotten a 2.0 or 2.5 in the rest. I had never even come close to failing a class before all this happened... I don't go to class. I don't read the book. I try to learn all the material the day before the exam. And then I get mad at myself for failing. I've wasted so much money and time and seriously fucked up my GPA. But I love what I'm studying. And I know that I could succeed if I could put in the time. I want nothing more than to make this happen. So each semester I tell myself that I will be better this time. I won't procrastinate. I won't give into my OCD. I will follow the studying schedules I make. I will wake up to my alarm and I will go to class. I will wake up from this nightmare. I will be "me" again. I can picture myself doing these things. I know the "me" two years ago would be able to do it. But I continue to fail. I continue to sleep through class. I continue to pull out my hair, squeeze my face, blink my eyes, hold my breath. I had every intention of doing it right this time. But I keep finding myself trying to learn the entire unit the night before the exam, yet again. I ask myself, where did that time go? What did I do instead? And honestly, I don't know the answer to that. I have been doing nothing else. Just sleeping, pulling, checking, etc. Nothing worthwhile. So I ask myself if I should keep trying. I'm signed up for fall classes. And I'm again able to picture myself doing it right this time. It seems like it will be so easy to wake up tomorrow and return to the old me. But I can't afford to waste another semester of student loans. So my mind is telling to drop out. I can't continue while I am ill. But what happens when I drop out? Probably nothing. I'll probably continue my terrible new lifestyle of nothingness, except now I won't be adding to my pile of debt, or moving in any direction whatsoever. If I drop out, I will have nothing motivating me. I'll just be stuck in this funk of nothingness. I want my life back. This is not me, it never was. How can my memory of myself be so vivid and real, so within my reach, yet so impossible to grasp? I do continue to have hope, and I refuse to give up. I changed so dramatically and suddenly once before, so maybe I am capable of changing again, to who I used to be. Oh, yeah, I forgot to mention that I have somehow managed to hide nearly all of this from my friends and the rest of the world. Nobody has a clue that I've changed or that I'm struggling. I couldn't expect anyone to understand. I would much rather tell someone who might at least remotely get it. I do have doctors I see, and supportive family and friends I could turn to. So I am ok and I am safe. But I do hope that I can find someone who I can relate to.
  19. 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 stomach cramps and tiredness, Will these abate? Also, how long until the therapeutic effect becomes noticeable? Of course, I'm hoping for a positive response to the drugs. I've have experienced many disabling neuro-cognitive effects during flair up periods, but have read much about the anti inflammatory properties of antibiotics which was also explained to me during consult. Should standard amoxicillin be enough? Thanks for taking the time read. If you read my other posts you may get the overall picture. My most troubling symptoms are related to cognitive dysfunction - I'd do anything to reverse them . Any experience or advise is much appreciated.
  20. 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. although, there is no appetite during a symptomatic phase. Any input would be great. Thanks.
  21. Dear All, I'm desperate for some guidance on my situation. I feel utterly lost and feel that I'm beginning to dwindle away as a solitary eccentric. However, I may finally have an answer nearly 4000 miles away. To give you some background: I am, or was, a 24 year old mathematics student from the UK, with a working diagnosis of ASD, OCD and ADHD. I have a very much up and down history of academic attainment ranging from A's to U's during troubling periods. Anyhow, this cycle has been most pronounced for the last 6-7 years but may originate in childhood. It all began in November of 09' at age 16, I was studying for A-Levels when all of a sudden and overnight I began experiencing extreme anxiety and unrelenting sexual intrusive thoughts (Pure-O), so severe it was impossible to channel my attention in any productive way. At about the same time I become housebound, started showing signs of behavioural regression and went off my food - I lost a lot of weight. At the time I was reluctant to talk about the thoughts, as I didn't believe they would be seen in the right context. Anyhow, fast forward a few years and with every "relapse" I become isolated, show marked personality changes and as result attract a lot of ridicule/bullying and ostracisation. I've never been able to find a relationship because of unrelenting untrue rumours and gossip surrounding my sexuality - unfortunately, I've been dumped a couple of times because of it. But more to the point I've never been able to explain the extreme shifts in my behaviour until perhaps now. The symptoms range from mood swings, regression, brain fog, short term memory loss, insomnia and all I can conclude is severe cognitive dysfunction - whether this is connected to ensuing depression, I don't know. Anyway, out of desperation and with my current diagnoses, I searched for answer to tie all the pieces together. I had a consultation with Dr Kovacevic, who said that he believes my case to be certain for pans/pandas. Hence, he's provided me with diagnostic and treatment recommendations. Here's the thing, can pans/pandas explain such severe cognitive impairment? - because guys with everything I've been thorough I feel like I've lost my mind. And number 2 is there anyway around getting the blood tests done and receiving treatment here on the NHS, and at the grand old age of 24 is there any hope of recovery? I'm sorry, I must sound personality disordered by now but I've gone a long way in the face of ignorance. I can hardly recognise the person I once was. I just want my brain back, I feel like an invalid. If anyone has some guidance, consolation or can enlighten me on the ins and outs of PANS, I'd be much obliged. What a life :/ Thanks for reading.
  22. 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 less sensitive and fragile to supplements and meds now so I'm hoping I won't have any trouble! Thanks in advance.
  23. 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 district is large and only one other student has been diagnosed with this condition. This makes me nervous from the standpoint of inexperience and objectivity (had many interesting looks during the 504 meeting). Also the understanding that our kids with this dx need various testing methods to get any kind of useful 'data'. So I guess I am asking if I should let them evaluate my son, or flat out deny and let them continue with a 504? Teacher said he may qualify for GIEP, but the paperwork they sent home lists standard evaluation and nothing about 'gifted' testing. Any insight/advice would be appreciated.....my own anxiety level is off the charts with this situation. 😱 Thank you in advance.....
  24. 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/
  25. 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!
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