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Found 205 results

  1. My son E., has PANDAS and is almost 6 months status post IVIG treatment. We were advised by the treating Physician that E. should have a tonsillectomy and adenoidectomy at 3 months, but could not find a supportive ENT to do this. We are still looking. Has anyone had their children undergo these procedures for the treatment of PANDAS? If so, what were the outcomes? Thanks
  2. Hi all, Our daughter finished a 2-wwek course of Augmentin earlier this month -- her first treatment for possible PANDAs after a bad virus in November led to severe issues (rage, ocd, tics, night terrors, extreme transition issues, etc). We've seen fantastic improvements since then. However, her biggest daily challenge now is transitions (i.e. putting on shoes/coat, going into school, leaving the classroom to go home, hopping into/out of cars -- she has been darting/running away, hitting/biting/needing to be carried when it's time to leave). Some of these issues were midly present before the virus, but we're trying to evaluate if this is all Sensory Processing Disorder or another PANDAs flare -- or combo of both. She starts weekly occupational therapy this week, fyi. I'm wondering if anyone has been in the same position or has insights on trying to differentiate symptoms of SPD and PANDAS? Thank you in advance -- Kelly
  3. Hi all, we had our first phone consultation with Dr. K on Dec. 22. Our daughter was on a 2-week duration of augmentin. while we’ve seen big improvements, we are still awaiting the detailed email Dr. K promised us the weekend following our Dec. 22 call. I’ve emailed him 5-6 times since then and have spoken to his office several times. They are apologetic and promise to speak with him. I’m at a loss here as he seems totally to be ignoring us. We’ve faxed blood work to his office too. Not a word from him. I did go ahead and set up another call with him with his office but feel really uncomfortable sending more $ to him when we a. haven’t heard a single word from him and b. are still awaiting his detailed notes from our initial conversation. I know he is a renowned doctor, but it seems he either can’t or won’t communicate. Any advice? I feel like we just got to him and now are considering needing to find another dr. thanl you — Kelly
  4. Hi all, My four and a half year old daughter finished a two week prescription Augmentin on Friday night. The improvements we saw in her during that 2 weeks were incredible -- sleeping in own bed 11-12 hours a night (vs. night terrors, or waking up multiple times each night, needing us to sleep in with her, etc), nonexistent rage (vs. daily rage, started after a virus in November), big reduction in OCD behaviors. We saw many wonderful moments of having our "daughter back." Question is, how long is typical to be on antibiotics? The last 2 nights our daughter has woken up a few times overnight. Thankfully no night terrors or screaming. But, as she just completed the antibiotic we are watching her closely for any recurrence of past issues. Is it typical for a kid her age to go on longer than 2 weeks? If she were to have another flare soon, would we expect her dr. to re-up the Augmentin or try a different approach? Thank you in advance.
  5. 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
  6. 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
  7. 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...
  8. 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??
  9. 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....
  10. 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?
  11. 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
  12. Anyone with a PANDAS teen with Severe OCD? My son has been suffering with PANDAS for 5 years, he's 18 (suddenly sick at 13 with a strep infection) and now living in a residential school. I thought we were finally on the right track..he started speaking a little more, and finally is taking his antibiotics but recently he started to decline more (he's already very disabled). Now he won't leave his room, has stopped eating and can't sleep. Stands all day. I feel that he needs to be physically moved from the room..just to help him get past this point but staff are hesitant. Not sure what other options we have but can't give up on him. He's had many IVIGs with no real lasting improvement. SSRI's did nothing but make him aggressive. Recently, we changed the antibiotic from Keflex to Zithromax, hoping for a faster improvement, and everything fell apart. He's back on Keflex and motrin for over a week and still no improvement. Very worried
  13. Hi everyone, I'm looking for a PANDAS doctor in Southern California who will treat adult patients and is willing to prescribe PEX, CellCept, Immuran, Rituximab, Prednisone, in addition to IVIG and antibiotics. I'm new here. 31 year old man who fell ill with an upper respiratory infection December 2016. I recovered from the acute phase, but a set of debilitating symptoms followed: Anxiety / depression / irritability Physical fatigue and low stamina Physical weakness and malaise Increased heart rate on standing and walking Chest pain Breathlessness w/ exertion Dizziness / lightheadedness on standing Cognitive dysfunction Light sleep I have been on IVIG for 4 months at increasing dosages (up to 105g now) with some good improvement. I am also taking 5mg of LDN and many supplements. The chest pain is 99% gone, I can drive, walk 2-3.5k steps a day, have less malaise, and cognitive dysfunction. However I am still unable to return to work so I'm looking for a doctor who can help me continue my healing with second line treatments. Relevant lab findings Type Component Reference Range Value Cytokines IL-6 0 - 5 80 IFN-y 0 - 5 40 TNFa <=22 58 Metabolites Pyruvate 2/8/17: <= 6.4; 6/8/17: 7-32 15.9 Cis-Aconitate 2/8/17: 18 - 78; 6/8/17: 10-36 <DL Isocitrate 2/8/17: 39 - 143; 6/8/17: 22-65 13 Auto Antibodies Anti alpha-1-adrenergic antibodies <7.0 U/ml: negative 10 Anti-muscarinic cholinergic receptor 4 antibodies 5.0-7.0 U/ml: at risk 6.9 Intrinsic Factor antibodies 0.1-1.2 1.19 Myocardial Peptide antibodies 0.1-1.5 1.89 Thyroid Peroxidase antibodies 0.1-1.3 1.4 Thyroglobulin <=1.0 U/ml 6 Thyroid Peroxide antibodies <9 IU/ml 15 Anti-Dopamine Receptor D1 500-2,000 1:32,000 Anti-Dopamine Receptor D2L 2,000-8,000 1:32,000 Anti-Lysoganglioside GM1 80-320 1:1,280 Anti-Tubulin 250-1,000 1:16,000 CaM Kinase II 53-130 130 Rheumatoid Factor IGM >6 11 Pathogens Coxsackie B4 virus <1:10 1:640 Mycoplasma pneumoniae IgM <770 U/mL 1327 Yeast None, rare, few Many DNSB 0050220 (Strep) < 260 U/mL 268 ` Immunological Natural killer cells functional 7-125 LU30 9
  14. I posted this on the Members Introduction page, and Chemar suggested reposting it here... Interesting forum, as you specify Lyme and PANDAS. Per repeated blood work over the last decade I have both from childhood. I'm a 45 year old man, permanently disabled (so they say for 14 years), and have been on a hard-core course for Lyme for the last year. Things are looking up. First, PANDAS: (Pediatric?) Diagosed with PANDAS (along with TLD, chronic encephalitis unknown type, Asperger's, CFIDS, and many merely-descriptive diagnoses - over the course of a year at about age 30). Ask my psychiatrist, he'll tell you I have all of them. Ask another doctor, he'll say he only knows about Lyme. Ask another, I have hormone imbalances, and acknowlege auto-immune problems. Ask many other doctors, they'll say there's nothing wrong with me at all and to go see a psychiatrist - which of course is the first doctor that will tell you I have all of those conditions. Second, Lyme: First tested, and came out positive in 2010. It took until last fall to get a doctor to do anything about it. The "University Doctors" at the same university that did studies that show significant residual effects after Lyme, didn't acknowledge residual effects as being valid until confirmed by the CDC. Ironically that was only about a month after their researchers published findings on mice, a couple years ago. It was suggested elsewhere that I probably have "post-Lyme" and was actually infected when I was a child - which is extremely likely considering where I was living, which also has additional tick-borne infections, only other one I show is that I had (thus IgG not IgM) Ehrlichia Chaffeensis, tested a year apart. So, if I'm so messed up, how is it that I'm writing this (seems to me) lucid message? How was I an honors student in college? Symptomatically, I have a hard time expressing myself here. Severe anxiety and sleep issues, which only after more than a decade was I allowed to switch to diazepam. I had asthma all my life, which suddenly disappeared at the exact same time as a severely dibilitating bout which left me bedridden for months, only later learning that my thyroid blew out (called Hashimoto's) and my hormones (thyroid, androgenic, increased estrogen) went completely out of whack and a lump grew at my left elbow. All that cannot be coincidence, but no doctor seems willing to put them together. Epileptic response to light (flashing, certain patterns, sudden changes) that merely render me useless (called Temporal Lobe Dysrhythmia) for quite some time. Visual disturbances after originally having 20/20 sight. Glasses can reduce eyestrain (especially prescription dark sunglasses) but the adjustment they make is very slight, yet I need reading glasses to follow text on paper, especially high contrast paper (laser printed black text on high quality white paper is impossible to even look at, there have been times where I must read such a document so copy it to low quality (and lower contrast) paper or directly to my LCD computer screen, which I have adjusted to low brightness, with soft colors. High functioning Asperger's? Absolutely. Meet me on the street and I'll seem quite normal, or rude (If you try to get me to engage me because I won't), but polite and cordial conducting regular business. Meet me a second time, I will have no idea we met the first time unless there's context or you have something unusual about you (they call that face-blindness). Those few 'friends' I have are long time acquaintances that accept me as I am, know I'm 100% trustworthy, and am as helpful as I can be. Yet I will not necessarily recognize them either. Show me a famous face from the 1980's or earlier and I'll tell you immediately who they are - not that I understand that. Physically, I've had times where I was truly athletic, others where I've wasted away, and for longer than I can remember easily worn out. Energy comes in bursts, easily forget to eat, sometimes force myself to eat and it comes back up. Blood Work: (I can't possibly list all of the out-of-range results here) Anti-DNase B: at a lab where the reference was a titer of 85: 480 in year 2000 240 confirmed two months later 340 confirmed in 2001 554 at the beginning of this month, with reference of 301U/mL Anti-Glomular Basement Membrane (something about determining Chronic Glomularnephritis due to the above) 21.2 titer (barely positive) in 2002 retest by another lab in 2010 "Neg" with no further information (a few months after severe change) Lyme: (too complicated to elaborate here) 2/2010 - "neg" at one lab 5/2010 - Western Blot "Pos" IgM, with "neg" IgG (fine print says could be false positive with EBV - which I have), and positive for Borrelia Burgdorferi Plasmid (no other tests showed positive) 7/2011 - convervative lab: "Neg" near simultaneous tests at two labs: one shows Babesia Microti previous infection, other shows "neg" A doctor decided to treat my results and symptoms as a new infection of Lyme since last October (he's not allowed to treat "post-Lyme" or "chronic Lyme" because they don't exist per CDC, so I've been on a severe course of antibiotics, antimicrobials, anti-whatever for a full year at a cost of $10K so far [covered by insurance] and shockingly, my body is improving significantly. At first I thought this was due to the simultaneous treatment with Testosterone, as mine was marginally low, and I've verified his treatment all along with a highly renouned Urologist. Here's where it gets bizarre: after a few months, my testosterone has increased near 1200 (very high) so I keep lowering my dose slowly to less than half, and my level keeps staying up there. The Urologist says this is impossible. He says it is unprecedented. He concludes the only reasonable explanation is that some systemic disease is resolving. CFIDS (Chronic Fatigue Immune Deficiency Syndrome) HHV4 (commonly called Epstein Bar) tested strongly positive in 2001, 2009, 2010 HHV6 tested off the charts high for IgG in 2001, and 4x reference in 2010, but IgM neg when only test was done in 2001 Symptomatically: thoroughly and completely consistent with this Syndrome, which many will say is not actually a diagnosis, but a description of symptoms; grouping together similar patients. A couple bouts of Fibromyalgia in over a decade, but gladly not long lasting. Tested for just about everything possible, ruling out all the obvious, and ~2001 learned that old records get destroyed, so went back and acquired every result that still existed, and keep every new result, and have them summarized. This prevents retesting the same old things every five years, as happened all my life. After relatively successful time through my 20's, I "crashed" starting in 1998, was put on the first 'band-aid' psychotropics which made things worse, cold-turkey switched to another set (major error and they would know better) which made me bonkers, switched and added and messed with my brain for about a year, then found my present psychiatrist which halted all that, tried several more but conservatively, and finding that they all made things worse, continued with testing and treatment of symptoms and I slowly went through stronger benzodiazepines, ending up stable on diazepam - not to suggest that's any cure, but at least I take absolutely no other psychotropics and do better than when I was on them. Permanent brain damage likely due to the 'bad science' in early 1999. Applied for disability in summer 1999. Have been mostly housebound since, with periods of reasonably good mental and physical health. I realize this is entirely improbable - but it is factual. I'm continuing the Lyme treatment which I guess I'll list (though may be incomplete) which will continue, possibly for a couple more years. Suggestions on protocol changes are welcome, as future stages will include anti-parasytics, maybe anti-malarials, and who knows what else. Thing is: I don't know that Lyme is really what he's treating. It is my suspicion that some systemic infection(s) are being treated, even if they are not even being identified: 1 year on Zithromax, concurrent to the following, some switched, others overlapped depending on how they might interact or affect the liver: Mepron for four months Ceferoxime Axetil Clindamycin (I think I'm forgetting some) concurrent to (not for Lyme) Testosterone injections (now tapering off) anastazole (now tapering off) Armour thyroid (now tapering off) diazepam (went up due to effects of others, may taper off) I have basically seven times a day that I take medication per protocol - makes it hard to leave home. Is this typical? Is it even like anyone else? Is it quackery that I'm allowing myself to be subjected to? (I'm terrible at proof-reading, and don't doubt some words or sentences are a bit out of whack) Lyme Green Panda (with TLD and CFIDS, too)
  15. Hi guys, Just a quick question as I find myself continuously fighting unnecessary objections from my parents despite a slight but significant improvement to the abx. Very stressful, it's like climbing the Great Wall of china! I've had a prior consultation with a prominent ENT who found large amounts of thick green mucus occupying my sinus cavaties. Scans are scheduled with the possibility of surgery. Here's the thing, after following Dr K's advise and responding positively to the antibiotics, I'm seeking a private T&A. I've noticed indeed that my tonsils are inflamed which only adds weight to the diagnosis. My question is would T&A be viable 6-7 weeks before attempting to remove any inflammatory fluid occupying my sinuses? My parents are now arguing that T&A won't be allowed where I have an ongoing infection in the sinuses! Unfortunately, due to NHS guidelines T&A surgery can only be sought privately (so costs ££££) They have on occasion begrudgingly accepted the idea of resourcing treatment in the past, but I still feel there not truly onboard with pandas in the clinical sense. I know you guys are the experts, you've been there, have experience, and gone through the experience! I was just hoping if someone could confirm that T&A first would be OK, as I'm desperate to get the treatment now instead of fumbling around talking to people that aren't truly onboard with me experience. Thanks guys you've kept me fighting on through a difficult few months! God bless.
  16. Hello everyone, my name is Arindam i have been suffering from OCD for last 8 years and always tried to find out what exactly causes the disorder and up untill now never really looked into the topic of PANDAS and how it could trigger the onset of OCD . But from what i have read i understand that PANDAS usually happens if children (ages upto 14) gets infected with group 'a' strep bacteria causing strep throats or scarlet fever which confuses their own autoimmune system to mistakenly treat a part of their brain (basal gangila) as foreign body and attacking it instead of the infection or along with the infection. Does anyone know or has any idea whether a child could develop PANDAS and then OCD from group 'b' strep as well ?
  17. Does anyone have experience with steroid bursts? Did they work for your child?Does anyone know of hospitals that will do IVIG in Washington state?
  18. 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
  19. 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.
  20. 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
  21. 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
  22. 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.
  23. 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.
  24. 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...
  25. 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.
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