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Found 204 results

  1. I have past positive test results for Lyme, Bartonella, Babesia, Relapsing Fever (B. Hermsii), Rickettsia. I spent the past year treating these infections with antibiotics and herbals and two IVIGs. I have never had any physical symptoms of the above whatsoever, in fact I have managed to stay very fit and workout 5 days per week throughout most of my treatment. All my symptoms are psychiatric PANDAS/PANS-like (24/7 extreme social anxiety, depression, obsessive thoughts/worries). Whenever I have treated any of my Lyme, co-infections and candida, I get a significant increase in my PANS symptoms along with some fatigue (never physical pain). I also don't really feel I ever improve with detoxing (epsom bath, alka seltzer gold, detox supplements, etc.). I have alway been under the impression that this is a herx, but I came across this article and thought it would be relevant to share: http://lymemd.blogspot.com/2017/08/autoimmune-encephalitis-and-lyme.html Based on this, "herxing" that lasts weeks on weeks and months on months and doesn't improve or change isn't actually herxing. It is continual triggering of the autoimmune response which is not helpful or beneficial at all. I was always under the impression that my feeling worse with increased PANS symptoms was the Lyme/co-infections dying off. Now I am thinking that all of that "herxing" may not have been necessary. Chances are, even though I have/had these infections present (and as we know you should treat infections BEFORE immune therapy/IVIG/PEX), my immune system was strong enough to hold them at bay and my only issue was the PANS autoimmune component. I hope this may be helpful for other people who have been in the same predicament as I was and if anyone has any insight on this I'd much appreciate it. Is my thought process above correct? Having just finished 7 sessions of plasma exchange, I am about to embark on 6 months of monthly IVIG and my plan is to avoid stirring the pot and re-triggering any autoimmune response while my body adapts to the IVIGs. For me, this is looking like using Buhner's more gentle approach to keep any remaining Lyme/co-infections in check without triggering my immune system into reacting and exacerbating my PANS symptoms. It has been a miserable road for me, especially in my early 20s when the rest of my friends have moved on and finished college and started their lives. I have yet to see any improvement and it has been 3 weeks since PEX. Only way to go is forward.
  2. I just got plasma exchange almost 3 weeks ago after a year of treating candida, Lyme, Babesia and Bartonella. I am really struggling right now with symptoms (mood based with anxiety, no OCD or tics) and haven't seen any improvement yet. Would love to hear others' stories of healing from PEX and how long it took to notice improvements. I almost feel like I'm getting worse. I'm 25 and just want this suffering to end and to get my life started.
  3. Hi everyone I have been reading the posts here for almost a year now, which has been so helpful in many different ways. I finally found the courage to post and share our story. I will really appreciate the input of those who have had similar experiences. I have a 5-year-old daughter who developed tics around May 2018. Prior to that, I do not remember her having any tics, compulsions or repeated behavior of any sort. I will try to keep it brief. She had chickenpox in April 2018. Looking back, she started facial grimacing, touching cars, getting upset because she had to be the one to close the car door quite soon after chicken pox. I did not think much of it. At the beginning of May, she had an accident which resulted in nose trauma. By the end of May, it felt like, overnight she developed face stretching/squeaking noise/snapping jaws. I was devastated as the first thing that came up on the google search was Tourette. Her tics were constantly changing in the combination of multiple motor and vocal tics. We visited a couple of neurologists who all diagnosed her with provisional tic disorder and told me that there was nothing that could be done besides to just wait and see if they last for more than a year. That's when I remembered that when we visited my husband's dad and his half-sister, they had both vocal and motor tics. But they do not talk about it. When I asked if any of them had a diagnosis, his step-mum said that the daughter's tics started when she was young, they even had MRI done and were told to ignore them. I would say her case is quite mild (unless I saw her when she was in the waning period) because she is going through puberty and has simple motor and vocal tics. My father in law, more understandable, he grew up in the 70s and not many professionals knew about Tourette's or diagnosed it, they were just called tics. For that reason, I never entertained the thought of PANDAS as I thought this must be genetic and this was the card my child was dealt beside that her dad is tic free. Fast forward, her tics calmed down by end of October but really came back with vengeance by end of January. By the end of February, she was prescribed antibiotics for her UTI and 90% of her tics subsided. So, I thought, it won't heart if I take her to a neurologist (U.K Based) who is PP friendly. Dr. K told me that decrease in tics after antibiotics would suggest the possibility of PP and she ordered blood tests, nasal swab, throat swab, and perianal swab. She was also put on co-amoxiclav for a month, which reduced her tics farther, she only has throat clearing tic. Although, I am not getting my hopes up as it might just be a coincidence. However, I got the results today and they are the following: A.S.O Titers - 555.3 (normal range is <200) IgE - 73.9 (normal range is <48) Anti-DNase B - 393 U/ml Nasal Swab showed: Moraxella catarhhalis Streptococcus pneumoniae Throat Swab showed: Staphylococus aureus Perianal swabs showed: anaerobes So my question is that even if you have a family history of tic disorder can tics still be initiated by infections triggers? Or this is just a tic expression mediated by infections triggers which are commonly observed in Tourette's population. I am quite confused as they do not seem to differentiate between Pandas tics and Tourette's tics as most academic papers suggest that Tourette's kids have immune issues anyways. Anyone who has a family history of possible Tourette's but has had success with tics by treating infections would be much much appreciated
  4. 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!!
  5. Hello, I'm looking to hear from some patients of Dr. N. I already talked with one user (thanks) but my mom wants me to talk to some more people. My psychiatrist is referring me but not sure if I'll be accepted or not. I wanted to know if his treatment is individualized per case by case basis? I ask b/c PANDAS treatment can actually conflict with Myalgic encephalomyelitis (M.E.) treatment. I.E. I know several M.E./CFS patients that were put on steroids and have been bedridden ever since (not good to suppress our immune systems as we have tons and tons of chronic infections and a very faulty immune system), I also have a CFS friend who did IVIG and was bed-bound unable to even lift her head for 6 months. I was just wanting to know if he would be able to look at everything as a whole when deciding on treatment and if he would be investigatory into my very complex and debilitating case? The new theory coming out about CFS is that the entire vagus nerve is infected (they found this with a patient who passed in the UK), I just really need someone who will try and figure out what the heck is killing me and has been for the past 10 years. Also, I've never seen a good neurologist (only one local who was terrible) so I'm hoping for sleep investigation as I can't hardly sleep at all now and haven't for 5+ years. (I take melatonin, zyprexa, zoloft, loads of klonopin, pro-gabba, and magnesium every night with little benefit or help). I've tried pretty much everything for sleep including the very expensive xyrem only fda approved for narcolepsy. Thanks for any info as related to Dr. Souhel Najjar (seems like a fantastic physician!)
  6. My son has PANDAS and Aspergers. He’ll be turning 21 at the end of Nov and no longer eligible to continue seeing his Dev Ped or the Bio Med Dr who treats his PANDAS. He was treated for Lyme Bart last year and is also MTHFR pos. I’m desperately seeking a new physician for him that “gets it”, in the NYC area. A plus if a PANDAS Dr accepts a Medicaid plan, but a must for PCP. Thank you.
  7. My daughter (Meghan) is 16 years old. She recently, (August of 2018) started experiencing what she called "spells". These are best described as dissociation. She says she's confused, doesn't really know what's going on and in a dreamlike state. These used to last for 10-15 minutes. Now it's become permanent, a 24/7 feeling. As a result she gets extremely scared and anxiety kicks in. We met with a therapist and the first thing that she noticed was that Meghan's eyes were very dilated. She asked us if she's ever been tested for Panda's. We didn't know what it was and said no. We spoke to our pediatrician who coincidentally is one of the few doctors that we've found that treats Panda's and he did some blood tests. The results showed that her markers for Pandas were all high. We started with antibiotics and anti-inflammatories. This has gone on for about 3 months with zero progress. We are now at the point where she doesn't go to school, she is not longer on her high school sports team, she's afraid to do certain things like get in a car, go outside and others. Our therapist has tried to counsel Meghan to push through this. Go to school, "lean into" the panic feeling but don't give in and stay home. That will lead to larger issues long term. My daughter has given a huge effort to do this, but just can't make it through the day. Yesterday she went to school, but sat in a common area trying to calm herself and never made it to one class. Today she really wanted to go, so it's not her avoiding school, but was just too scared to go. We've tried to understand more of what she's scared of, and her response is that she's scared of the feeling, the dissociation. So here are my questions: 1. Has anyone experienced this dissociation feeling? Typically dissociation is a result of a traumatic event and Meghan has not experienced anything like that. We've delved deep into this to be sure. 2. Any advice on how to push through the feeling of dissociation without it creating so much fear and anxiety? 3. I have read of people that say longer term antibiotics are necessary to treat Pandas, 6 months to a year. Our pediatrician has taken the approach of a 10 day regiment or 10 days followed by 5 days. Please comment on your opinion of how long antibiotics are needed. 4. Please add any other advice, comments, links etc. We truly appreciate it and will be sure to share anything that we learn along the way. Thank you.
  8. 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
  9. 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
  10. Hello, New to this forum and desperately trying to find a PANDAS specialist in Southern California for our 13.5 yr old son with PANDAS. We really need someone who understands treatment and can be very proactive. Our pediatrician was not well versed in treatment at all (and sadly Cedar Sinai can only test ASO titers to 800...they don't have the methodology to test higher so we have no idea of his initial score. Last tested he was at 918. We found an integrative MD who was willing to let us into her practice. She has helped with supplements, brain mapping (results: brain inflammation, wasn't getting REM sleep cycles, short term memory issues, anxiety... the neurofeedback helping calm some of the OCD issues and helping with focus issues and now sleeps and dreams (so REM sleep is finally back, although does have nightmares occasionally). She has him on 75mg of Lamictal and other supplements for anxiety. She won't try prednisone...wants us to find a specialist since PANDAS isn't her expertise since he is still suffering. He had Periodic Fever Syndrome as a Toddler (tonsils and adenoids removed at age 3.5), history of continued strep. Last pathogen was strep in sinus cavity...been strep free since mid may. Curious if there are any Doctors near Los Angeles or if any of the Doctors in Orange County are experts in treating kids with PANDAS. I will travel anywhere in California if need be to find the help for our son. Any suggestions or reviews would be most appreciated:-)
  11. 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
  12. 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.
  13. 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!
  14. Have you seen this article? https://home.liebertpub.com/news/revised-treatment-guidelines-released-for-pediatric-acute-onset-neuropsychiatric-syndrome-pans-pandas/2223
  15. Hello, all. I posted in this form about eight or so months ago searching for answers on how to treat my daughter's pandas. Since then, after a very long and hard journey, we have found out she has Neurolyme and multiple coinfections. It seems she regressing neurologically on a daily basis and the oral antibiotics aren't doing anything for her. She responded excellently to ceftriaxone in the past, so I am in desperate search for an LLMD willing to give it to her again. We have been seeing an LLMD for a few months now, but I found him to be dismissive and not willing to hear anything out. My daughter is about to turn 18 and half of her time is spent doing compulsions, the other half she is spacing out, sometimes so bad she can't remember her own name. She is not going to be able to tolerate oral abx until her head is cleared up a little and pyschotropic medicines have an extremely negative effect on her. I am willing to travel overseas if it means getting her the proper Lyme treatment, I just need some recommendations please. I'm aware forms don't allow LLMDs information to be posted, so if anyone could email or personal message me some it would mean a great deal. Please. I am desperate
  16. our DD has been prescribed as part of her protocol either Trileptal or Lamictal - does anyone have experience good or bad? she has been diagnosed with Lyme . Our concerns are the side effects of those two. They are supposed to help with her nuero-irratabliity, nerve pain and extreme sound sensitivity because of the infection. We are considering using something like Lyrica - appreciate any feedback
  17. has anyone been treated by Dr. J @ his clinic, going to start my DD on treatment. pls inbox me with comments..thanks much
  18. For those of you who have tried LDI for strep - what has been your post LDI experience - does your child still get strep infections? if yes, how do they react to these infections - do they get regular strep symptoms (minus flare)? Do you see their immune system fighting these infections? My worry is that if i get my child "sensitized" to strep, his body is going to ignore strep as an antigen - his defenses are going to be lowered as a result of the sensitization. Hope this makes sense.
  19. Trying to connect some dots . . . would greatly appreciate your response. 1. Does your PAN/PANDAS child have hazel eyes? 2. Are they vegetarian (not culturally)? 3. Was their mother vegetarian during their pregnancy?
  20. 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
  21. Hello - have you all heard of and considered Low Dose Immunotherapy (LDI) for your children. There is a very nice YouTube video of Dr Ty explaining the use of LDI for lyme/pandas. He is a very convincing speaker and we are going to talk to him. Wanted to know if you have any feedback for us.
  22. Has anyone ever seen a sibling of their PANDAS/PANS child seem like they were starting to exhibit symptoms and then they resolved themselves? My daughter every now and then I swear I see something, and then a few days it's gone. I mean it disappears without any intervention. Her clothes will bother her (slight sensory issues since birth) or she will just sort of be off. Like she's npt 100% there and then a couple days later she's just back to her normal self. We are day 10 of chicken pox and she is off (as I have posted elsewhere). We took her for a strep test. Negative. My pediatrician who has always been great with my PANDAS son likened it to possible kickback of the virus. His analogy was it was like she's been underwater and her body has to catch its breath. Or like damage is being repaired and to try and see if it resolves itself. She is annoyed that her bed isn't made correctly, but that's something that isn't new to us. She has always liked a neat bed (as I remake mine every night because I also have a thing about sheets). But she's not angry it's not made yet. I told her I would help her when I was done doing a few things and she said ok. In your opinion could this be some quirk of hers that could be just a little exacerbated due to inflammation? I told my husband that if I see it not going away or increasing that I will call and get abx. I mean I know my kid best, but I also really love and trust my pediatrician. He has been great with my 9 year old who exhibited overnight TICS, anxiety, and OCD in 2008. He is doing great. Only has a mild tic from time to time. Thanks for your time.
  23. Hello! I’m feeling VERY alone because I haven’t seen my doctor at all since BEFORE I was diagnosed and put on an antibiotic! I have been diagnosed with adult PANDAS recently on top of a diagnosis of ADHD, anxiety, hypoglycemia, hypothyroidism, and seizures I began treatment with an antibiotic last month, but I’ve been feeling VERY introverted, irritable, and indifferent for a month now, especially. Does anyone else have these same symptoms? I want to keep to myself and only work on what I need to do most of the time and I get overwhelmed or very irritable when Im in social settings or am made to talk to someone I dont have to talk to or don’t plan on talking to. I’m also very indifferent to most things I do and to most people. I don’t feel like I care about anything. My mother is VERY upset with me that I’m like this because I don’t want to talk to her and I get short with her very easily. It makes me upset that she’s upset because she’s now telling me that I’m not getting better in her eyes and that I’m not so sick that I should keep to myself in this way. In short, I kind of feel as if I dislike everything! What are anyone’s experiences or thoughts on such things with PANDAS? thank you!
  24. 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
  25. 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
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