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Found 132 results

  1. **Approved by Forum Admin** Parents and Carers Needed to Participate in Research Study! Do you have a child aged between 5 and 12 years with a PANS/ PANDAS diagnosis and currently live in either Australia, UK, USA, Canada, Ireland or New Zealand? Researchers at the University of Newcastle, Australia, are researching the impact that PANS/ PANDAS flares has on a child’s participation in daily life activities. If you are interested in finding out more or participating, please click on the following link: https://is.gd/PANS_Study. We encourage you to invite other families you know, who may also be interested in participating in the study, by sharing this flyer or the above link. This research is being coordinated by Michelle Newby, PhD Candidate (michelle.newby@uon.edu.au); Shelly J Lane, PhD, OTR (Shelly.Lane@colostate.edu); Kirsti Haracz, PhD (kirsti.haracz@newcastle.edu.au); and Janice Tona, PhD, OTR (tona@buffalo.edu). This project has been approved by the University of Newcastle, Human Research Ethics Committee, Approval No. H-2019-0284
  2. Hello Everyone, Brand new to this forum and honestly believe I may finally be going in the right direction. After 2+ years of ER visits, doctors visits, meds, meds, meds my son is in a very severe condition. Past 2.5 years with my son Jonah have been a nightmare and nobody ever mentioned PANDAS/PANS in all that time. For 14 years Jonah was a loving life kid, swimming, playing, beach lover until something took all this from him! (Jonah has been non-verbal since the ages of 3 and is now 17, lives near Palm Desert, CA) I recently purchased the book "Your Child Has Changed" and oh my goodness I have been saying that for years to death medical ears. The significant regression in my son is so crazy obvious and yet I often feel powerless to help him. Looking back I can recognize that Jonah did suddenly develop OCD when he couldn't walk normally anymore completely out of nowhere. He would need to touch posts, walk backwards and forwards frequently and would freeze often at cracks however all the "experts" told me relax it's just another autistic trait. So I did, for a while...and now 2.5 years later Jonah cannot go anywhere without serious self injury, panic attacks and massive anxiety. Last 2 years I have ... Worked with child Psychiatrist with over 20 years experience at one of the largest children hospital in our area prescribe a ton of SSRIs and other brain meds to no avail. Jonah started having seizures 6 months later but only once every 3 weeks on the dot! No seizure medication has ever altered frequency. (In fact most of the time the seizure temporary stopped the OCD behaviors and made his symptoms less severe) 2018 UCLA psych "experts" hospitalized hime for 4 weeks put him on massive amounts of Prozac and sent Jonah back to me much worse than he came in. 2019 Sutter Psychiatry in Sacramento performed ECT as his aggression during transitions was getting too severe for anyone to handle - didn't help his anxiety or OCD at all. I feel very angry at the medical field and (annoyed at myself) because my son is so severe and now incapable of basics tasks he could do years ago and yet a possible diagnosis exists. I have now started working with a MAPS doctor and getting hair samples, labs tests started) but my fear is that Jonah could have had PANS for close to 3 years now. Where do I go from here? There is a place in Irvine, CA says they diagnose PANS https://www.integrativemedicineoc.com however have left them 3 messages and no reply. His current doctor has not even heard of PANS 😞 Jonah really needs some urgent help as his life is wasting away.... any advise would be greatly appreciated.
  3. So at the doctor he says pandas seem unlikely. So said maybe cough syrup or tesslon perls induced phycosis. Even said my daughter my need to stop taking cough syrup all together. She hasnt had any in 3 days. Anyway he did say he would order prozac. I was livid. Im sorry to step on anyones toes, but how do i start my daughter on the big pharma and shes only 13. Its so scary. I will be trying to do things myself. The intrusive thoughts are paralyzing to her.. also we found some mold in our bathroom and will be working on that this weekend. Thats not helping. I feel like i may need therapy when this is all done.this is scary and im trying to still focus on my newborn and my 11 year old son. Any help would be awesome!
  4. Ds 15 diagnosed at 10. Three long years homebound and once PANS under control we had post viral CFS. He is healing and physically stronger than ever he is even on sports . But still emotional and focus is way off ADHD and he is beyond messy. I don’t mean to sound unappreciative. We are so thankful he is healing but he leaves everything everywhere like tornado hit the house. Blows his nose on tissue throws on floor. Clothes all over home. If he makes cereal for example milk is all over n cereal is on the floor. We remind n remind n yell and reason and yet it’s now year two of this mess and zero executive skills . As a toddler he at least made efforts and was much neater. Now .....He ignores and if we press him he says “stop yelling.” Or “It’s never enough with everyone” . Huh? He even leaves back back in the yard with shoes socks wherever. No concern. No effort. Embarrassed to say but he pees all over toilet n floor as well. Missed toilets n never flushed. What the heck! We go over toilet rules n everything daily and just says “ sorry mom” . Teeth brushing spits n never ever rinses I takes him to sink n go over n over and he says oh. I forgot. N laughs. Help!!! . Used Dental floss left out everyday almost like he refuses to use garbage. He just doesn’t seem to get the way life functions. I don’t get it.
  5. This is a case report about a 14 year old boy with psychiatric issues. Turned out to be PANS. Published in the Journal of Central Nervous System Disease, just a few days ago. There are images of the Bartonella rash. Just like the rash my dd has had in past. https://doi.org/10.1177%2F1179573519832014
  6. So I haven't been on this board in a long time. Why? Because my two PANDAS are doing so great it is not a "thing" anymore. But I wanted to come back and offer hope and encouragement because most people on the boards are struggling and the success stories are off the boards living their lives. I have a (now 18 year old) who began with PANDAS/aspergers symptoms as a toddler. It got very bad- tics, ocd, hallucinations when he had strep, and absolutely zero social skills or awareness. What we did: turned out we had major mold in our house and did complete mold remediation. He was on Augmentin for years and that really cut back on the illness. He still struggled socially a lot, so the summer after 2nd grade we did Brain Balance. It was hard. It was not fun. But we did it hard core, taking away the left brain toys (tinu books, figures, legos, even books not related to school) and did the practice exercises an hour a day on non-center days. We tool him off gluten and dairy (I believe he is celiac but he can now do dairy). We gave a ton of vitamins and digestive enzymes because he was not growing and was predicted to be 5'1 as an adult. Within a few months after Brain Balance we saw some social awareness. It came gradually but the improvements snowballed. He is now a junior in high school who plays on the basketball team (He literally couldn't catch a beachball in second grade), was nominated for the homecoming court this year, has strong friendships, and is very happy, planning to study architecture in college. He is sweet and happy and doesn't remember most of the stuff when he was younger. He is very outgoing and makes friends easily. When his totally normal sister finished fifth grade we went to Disney and I noticed her having tics. I couldn't believe it. Yep, when we got home it turned out she had a raging strep infection with only tics and separation anxiety to show for it. ABX worked for a while, but she became withdrawn and started spending all of her time in her bed. In desperation, we flew to Dr T. Her numbers were borderline low, NO ASO numbers, and he told me she would never qualify for IVIG. Ironically the son I started off talking about had severe CVID. On paper he looked terrible and Dr T. wanted to do IVIG on HIM. Nope. We saw another Dr, Dr Jill Dickerson, in Georgia. She got my daughter covered for monthly IVIG mostly based on the fact that she had a strep infection that even four simultaneous (including IV) abx couldn't touch. (The herb cryptolepis got rid of it and she still takes a maintenance dose). So she has had 1.5 g/kg IVIG for a little over two years and we are weaning her off because she is healed. My now 15 year old is completely normal and is symptom free. (It took about 6-7 months of IVIG before tics were gone). Sorry for the lengthy post but I want to give someone the hope I was so desperate for. Your child can and will get better. Don't give up. And Brain Balance was a miracle for us (an expensive one) but I truly think it worked because we did it to the nth degree. Have Hope!!
  7. DD1 was on 6 weeks of Azithromycin. Little/no improvement. Switched to Augmentin 5 days ago. Now leg pains are back with a vengeance (hadn't really noticed they had gotten so much better - guess they had), and we can't get her to brush her teeth. DD2 started Bactrim 5 days ago. Restrictive eating/OCD flared, and 24 hours ago, she was switched to Augmentin. Reports confusion/difficulty reading tougher texts that she thinks she would have been able to comprehend otherwise. Was confused tonight in ballet. I thought PANS would respond to antibiotics by getting better quickly, slowly, or not at all, but not by getting worse. Are they both on the wrong antibiotics? How long should I give it? PANDAS pediatrician doesn't think there should be a herx? We have two more weeks before they are seen at Columbia.
  8. Hello. We have 6 children with lyme and co-infections. 3 have PANS. I am seeking advice for our 16 yo ds. We think his PANS symptoms began around age 3 1/2 yo (positive bull's eye rash at 2 1/2 yo w/only an 8 day course of antibiotics.) His prrimary symptoms until his teens were OCD and learning issues. He was never formally diagnosed; we've put it all together within the last year after his sister had successfull treatment for an eating disorder with IV antibiotics. Fast forward to now, he has major rages and still can't learn. Super high anxiety and OCD in the need to control everything in his life. He does not have relationships with anyone outside of our house and his siblings do not enjoy being around him as he is very abrasive. After one year of antibiotics, physical symptoms have improved with no shift in psychiatric symptoms. Our doctor has recommended brain mapping/neuro feedback and we are going to pursue that. In the meantime, I would like to figure out how we can start the process to be approved for plasmapheresis, realizing that this is a long shot. Does anyone have any advice? We are in Colorado and if anyone knows of a clinic or doctor that we consult with, that would be appreciated, too. Also...the Cunningham panel. Has anyone had a positive after 10+ years of illness? And, is it possible to get our son back after so much time spent in this illness? Amy
  9. Has anyone who belongs to UHC gotten approval for IVIg for 2018? We have tried several codes all of which have been denied and appealed. If so, would love to know codes used.
  10. 9 year old daughter is suspected to have PANS. About 2 years ago she lost her ability to write and do math and started having anxiety. We've since been on a path to determine why a healthy, A+ student all of a sudden develops a learning disability. We're in the testing phase where we are trying to get to the bottom of the cause. We are working with a Dr with no experience with PANS and we have a naturopath as well. Recent blood work came back with her ASOT at 350 and her IGE at 2600, plus deficiency in vitamin d. Her Dr. called me to tell me to put her on Vitamin D but said nothing about the high ASOT and IGE. I only noticed it when I asked for the report. I don't know much about ASO and IGE and whether I should be concerned about those levels. Should I be pushing for them to put her on antibiotics? I have no recollection of my daughter ever having physical symptoms of strep, but I know that not all people have symptoms. Any ideas?
  11. To give little history, I've been diagnosed with schizoaffective disorder, which is simply explained as bipolar and schizophrenia together. I've also had tics all my life, mostly blinking, and some OCD. Whenever I take immune boosting supplements my general feel of psychosis and irritability increases, and so does my tics. Any idea as to why? And I'm open to any recommendations on how fixing it. That's it for my question. Below are some indications for those that have the ability to do detective works. Olive leaf extract: gives me energy and temporarily cures tics. Often cause mania, anxiety, some delusional thoughts and dissociative feelings. Coconut oil and MCT oil: irritates my throat. If taken too much I get full blown symptoms of flu, even worse. Temporarily boosts energy and cause mania, but also heightens my anxiety. Cured warts on my feet. Oregano oil: made my tics worse and my head gets locked into thought loops and even with meditation my mind cannot stay clear headed for more than few seconds. This made me look at salicylate sensitivity as well as oxalates. I got a bottle of No-Nenol on the way so let's see. I have once cut out all high sal foods and cosmetics but it didn't seem to help much. But recently I've been consuming a lot of phenolic supplements and since I've cut them out my thoughts seem bit clearer. Some general main symptoms include Constant thought loops that are obsessive and unproductive, even though I frequently meditate (up to two hours daily) Tics and muscle tightening (semi involuntary) Brain fog Delusional feeling and thoughts Ultra ultra rapid cycling mood. Cocaine high - numb and no pleasure - suicidal depressed (recently okay ) Extreme sensitivity to sugar, leading to severe depression and anxiety Mild OCD Anxiety Digestion seems fine since changing my diet. Let me know your thoughts on this!
  12. wondered if anyone has a kid with Sydenham's chorea (SC) diagnosis?? my dd got her SC diagnosis confirmed by Dr. L last week. So its PANDAS along with subset of SC. We initially focused on the the Lyme before we got the PANDAS diagnosis. Not much effect on her symptoms ( cognitive decline and hearing sensitivity). We did the IVIG and saw real improvement - that was 3 months ago. not much since. We have no abx to deal with strep which is the next step wanted to see if any folks have dealt with SC and what was most useful treatment for them? I'm not sure if we have killed the lyme but we where on zithro for 6 months. Dr L does not think its Lyme said its the strep thanks
  13. Have you seen this article? https://home.liebertpub.com/news/revised-treatment-guidelines-released-for-pediatric-acute-onset-neuropsychiatric-syndrome-pans-pandas/2223
  14. has anyone been treated by Dr. J @ his clinic, going to start my DD on treatment. pls inbox me with comments..thanks much
  15. Hey, folks. First of all, I want to excuse my english. I'm a german fellow Maybe I will ramble a little bit but I hope that you will get the gist. I'm a 25 years old male from Germany who has suffered from OCD since I was approximately 3-4 years old. Basically my first memories evolve OCD. Sounds not untypical doesn't it? The reason I'm worried and want your opinion on my case is the very early onset of the OCD. I have read that OCD CAN start very early. But looking back, I wonder if OCD alone can really be that aggressive and start that early on. Furthermore, I'm aware that I had a pretty severe sore throat and a cold a few times when I was around year 1,5- 2,5. I asked my mother about that. Don't know if it was step though. As i already said, my OCD started very early with symptoms "not-right feelings", touching, compulsions to get it right (staring left right left right and so on), extreme fear of losing my parents, praying, confessing and a lot more. Can't really tell if this can be still regarded as a "normal" OCD case but what surprises me is that it was pretty intense even early on. And of course it only got worse. I somehow managed to get through kindergarten but looking back now I was always a worrywart and even at that time couldn't just be "a kid anymore". In school my BDD started. It is an OCD spectrum disorder but I really haven't seen PANDAS cases with kids that developed BDD pretty early on as well. By the time of 7 or so I was already totally consumed by OCD and BDD. Was hyperaware of my looks, thought my eyes looked weird and ugly, tried to be in control of my looks, had all sort of weird obsession ( why am i attracted to woman/ why are bodyparts attractive/ do i really love my mother/ do i really like this and that/hypermorality/hyperresponsibility and 1000 more. And i am NOT exaggerating. I really had any f*** obsession you could ever have. It's crazy. I wanted to make a really long text but I realized now that it could be summarized as. Having extremely severe OCD since early childhood/ BDD since ahe 6 or 7/ derealization since age 8 or so. The derealization isn't always there but most of the time it is there, even if it is in the background. Having symptoms of executive dysfunction: I get stuck on concepts / thoughts and have a freakishly hard time to "update" my brain. I'm on Luvox 250 mg since 2 years and since I take it regularly and don't drink alcohol my OCD/BDD/derealization have really gotten much much better. 60-70 % improvement. It is really the first time in my life where I actually can enjoy some things and am not always totaly obsessed/fixated/surpressed by worries. Sorry, lots of ramble but I just had to get it out somehow. What is your take on the situation Love from Germany Sascha <3
  16. PANDASnetwork.org is requesting input from families on our experiences with PANS/PANDAS. The results will be anonymous and PANDASnetwork is going to present the results at the Common Threads conference next week. It's a quick multiple choice type questionnaire. If interested it needs to be filled out by this Friday 3-2-18. https://www.surveymonkey.com/r/PN_CommonThreads
  17. Our adult PANS dd is having auditory and visual hallucinations, ONLY at night, and ONLY in her lower level bedroom. These did not occur in our previous home. Our current home had very high levels of radon when we purchased it, but a mitigation system was installed. We are in the process of having it checked to see if it is working properly. So, I know hallucinations can be a part of PANDAS/PANS, but her's are ONLY at night, and have only been in this home and only in the lower level. Has anyone else had something similar going on? We've ruled out her sleep meds, as it occurs with different kinds, and usually the hallucinations don't happen until early morning. She's the "canary in a coalmine"...she has the dreaded HLA genes, so I'm wondering about other toxins. We're pretty sure there is no mold down there, as mold usually causes her migraines and vomiting, for days, and this is not occurring. Anyone else dealing with PANDAS/PANS in a high radon area?
  18. 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
  19. 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.
  20. 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
  21. 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...
  22. Hi all, We have our first phone consult coming up with Dr. K. Can anyone let me know what to expect from that call? How best should I prepare. We have an hour tops and I want us to be prepared as possible. Thanks in advance -- Kelly
  23. 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
  24. 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....
  25. 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??
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