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  1. 2 points
    bws1565

    Why not start antibiotics anyway

    Jumping in with a different perspective. Was your son vaccinated? Vaccine adjuvants are designed to cross the BBB, specifically aluminium. There was much discussion on this site that Pandas is a version of aluminum toxicity. With vaccines, the aluminum is designed to hold onto the antigen and keep it in the body long term; thereby introducing antigens into the brain as well. It is believed that detoxing from aluminum and mercury helps quiet the immune system. We have tried selenium for mercury, malic acid for aluminum and other stuff as well. She is probably not all clean, but definitely is aluminum sensitive- she cannot tolerate aluminum based deodorant. She is currently using Diatomaceous earth for a slow detox for everything. I think it is helping well. I have learnt about vaccine reactions about seven years ago, and have not vaccinated my kids since. I have 2 totally unvaccinated kids, and several partially vaccinated. It is a CRIME what pharma is doing to our kids without knowing the long term effects. I can honestly say, VACCINES ARE NOT WORTH IT! Which parent would not nurse a child through a bad case of pertussins or measles, and even sweat the time through the a hospitalization for physical problems versus dealing with what we are dealing with here?!!! Just venting my pain. I wish I would have known about this issue many many years ago.
  2. 2 points
    kos_mom

    Tonight's Chicago Med episode

    I contacted PANDAS Network right after the episode. This morning I received this response from Diana Pohlman: "We heard from lots of parents and 600 innundated the producers email. We are following up with an email to the producers as well. Happily 20-20 is doing a great story on REAL TREATMENT mid May and that will be on ABC." NBC is the producer for Chicago Med.
  3. 2 points
    MomWithOCDSon

    Help....when to be admitted?

    Oh my, I'm so sorry! Your son's description of how he's feeling reminds me vividly of Susannah Cahalan's description of her own auto-immune illness in "Brain on Fire." She, too, experienced paranoia and some other symptoms that many traditional doctors would all too readily dismiss as solely psychiatric manifestations, dispensing with the underlying physical issues. If your son is a danger to himself or to others, you will need to get him immediate help; if that means the hospital, then it's the hospital. Unfortunately, I think it likely that you should expect to be met with some psychiatric interventions -- tranquilizers, at a minimum -- if he presents as agitated or full-on delusional at admissions. You may have reached a crossroads where the abx are insufficient for meeting his illness adequately. Can you get a PANDAS/PANS specialist on board? I know a number of families here have allowed short-term and periodic use of anti-psychotics or tranquilizers (Valium, Seroquel, etc.), just to get there kids calm enough to travel for help, and/or to give the kid and the whole family a break and some sleep. I'm not advocating that, necessarily, but you have to do what works in order to give your kid their best chance at a route which leads to the best healing. Hang in there. Hopefully, someone else will chime in with more direct experience that may resonate with your situation.
  4. 2 points
    I am checking as the mom much farther down the road to be a help, if I can. My daughter was diagnosed in November 2012. This is our five year anniversary with this disease and there is HOPE for all of your kids. This is long but please read: With one of the most profound and difficult to treat cases to ever treat - my daughter is staring community college in the spring! You name the symptom and she has exhibited it - to name a few... complex tics, anorexia, bed wetting, mutism, depression, OCD, sleep disorders, a host of psychiatric symptoms (including schizoprhenic type symptoms including violence), and catatonia. She has also had every treatment - countless antibiotics, IVIVGs, rituximab, cell cept, prophylactic antibiotix, cytoxan, tociluzimab. We lost four years of life - she lost high school, and I shut down ever yaspect of life to take care of her. It has been lonely, frustrating, difficult, depressing...and yet hopeful, strengthening, funny, and finally TRIUMPHANT. I am repositing something a wrote in 2015 to give you all some encouragement and some general advice - especially to parents of children who are most severely affected. After I wrote this my daughter's trajectory slowed, but we found tociluzumab was the treatment that finally rounded out her recovery and though she still has some memory loss and is still making her way back academically. We know that she is going to have a NORMAL LIFE. Just a year ago, I thought she would always be with us, never have a job, never have friends...and now she is learning to drive and starting college classes (with a little support from special services) in a few weeks. Now she is running, swimming, laughing, talkative, and back to her old self - volunteering at a local library and worried about her hair and makeup (you have no idea what a big deal that is). Remember that every child presents differently and the part of the autoimmune system that is affected - and therefore the treatment that works - is different for each child. That said, PM me or ask me here and I will try to start checking in now that I too have my own life back. Hang in there....it will get better... Here is the 2015 post. My daughter has one of the most severe and drug-resistant cases of what falls under the big umbrella of a strep-induced autoimmune disorder that left her with severe neurological and significant joint involvement. For those who don't remember us, my daughter was an exceptional student and athlete, and world's happiest and easy child to raise - until the bottom fell out two years ago. In a matter of a days she suddenly and frighteningly developed Sydenham's chorea, tics, mutism, mood swings, joint pain and swelling. aversions, delusions, rage and host of other heart-breaking symptoms. It has been a tremendously challenging road and so as an unwilling seasoned veteran here is the advice I am giving to anyone who thinks their child has PANDAS, PANS, LYME or any other unusual/frustrating unnamed condition. 1. Do NOT waste time. The first time you see symptoms that do not clear up permanently after a round of antibiotics, get real help. Any of the symptoms I have described indicate your child has neurological inflammation. For the majority of kids, this could mean your child has cross-reacting antibodies, that are attacking your child's healthy tissues. For many kids this could involve brain, heart or joint problems so you absolutely need to rule out any potential damage, especially heart involvement (this was the one potential result our daughter had). The longer you go, the more damage that can result and the harder it will be to treat. This means: 2. Your child has a PHYSICAL disease with psychiatric symptoms resulting from inflammation so you need the right specialists. If your child has recurrent or ongoing flares after antibiotic treatment, and you are only seeing a psychiatrist or PANDAS doctor who has not done a full spectrum of physical diagnostics (MRI, heart ultrasound, tests for Lyme, allergies, inflammatory markers, titers, etc.) then ask your pediatrician for a pediatric neurologist referral. Remember this is PHYSICAL. I can't emphasize this enough: If you can, go see a neurologist and an immunologist. 3. It's not in a name, so don't get stuck with a label. I know we all want that relief/satisfaction of saying my child has "PANDAS" or some other condition, but that can predispose physicians to start treating before a real diagnosis and plan is put forth. For example, we ran off immediately to USF for PANDAS evaluation, at which they gave us some surveys, talked to us and then tossed us some antibiotics with a diagnosis of PANDAS. Not one physical diagnostic test was done and we were foolish to go along with that. In time, they would have ramped up to IVIG, etc....but I would never have known that my daughter could have had heart damage. For those wanting a name., honestly, ( For the math-minded I think we are talking about a spectrum of autoimmune diseases that could be plotted on a coordinate plane of X and symptoms on Y, to find that our kids are scattered all over the place) I think there are as many names for these diseases as there are kids. Just call it, "Insert your child's name here" disease. I am kidding - but also not. The many presentations of these diseases explain why they sound akin to others (like Lupus) and yet different when we talk to each other here. Also, never mention diagnosis to insurance providers. Many are looking for reasons to reject claims so let your doctors and insurance companies play the coding game. 4. Take meticulous notes regarding symptoms.Take pictures and video even at bad times. Trust me, you will forget. Look for subtle things like handwriting and appetite changes, sleeping changes, expression of unusual ideas, reduced speech. When first met our neurologist, I came in not with a disease name but a table of symptoms, date of onset, severity and frequency. I wanted them to diagnose without predisposition. 5. Don't worry about the bandaids - yet. I know a lot of us sweat everything from glutens, to certain amino acids to micronutrients. Until you rule out allergies, known genetic deficiencies....don't lie awake at night and wonder whether or not you are missing some esoteric piece of the puzzle. Feed your child well, make sure they are getting plenty of vitamin D (low is usually indicative of a chronic inflammatory process), and as many nutrients as they can from real food. You are a good parent, and while the little things will help along with a healthy lifestyle, there is no magic pill. Proper diagnostics will eliminate a lot of concern about allergies and root causes so you don't waste a fortune in time and money trying this and that. We are desperate and vulnerable so read everything with a critical eye. 6. Trust your gut and assert yourself. I went to FOUR doctors and had three ER visits with my daughter, shaking my head and respectfully telling them we were moving on when they told me she was probably just depressed. WRONG. (Tangents: I think our world, present and past is full of kids who are under-diagnosed for physical problems, and there is NO difference between mental health and health. It's just health). 7. Your child is not your child. There is no way that sweet baby of yours would ever do the things he/she is doing if he/she was healthy. Easier said than done - but do not take it personally. That said, reasonable consequences apply. If your child is having severe outbursts, you have to remind yourself: THIS IS THE DISEASE. Say it like a mantra if you have to. 8. Get healthy and fit. I have had to care for my daughter for two years 24/7. Most of you will not be like that. It's going to try your body, mind and spirit. It's going to be hard so you need to be battle prepared. At times, you are going to be scared, angry, tired, frustrated and lonely so you are going to need to be at your best like no other time in your life. Get sleep and don't worry if there are fingerprints on the appliances and the car needs vacuuming. My family has learned that no matter what, I am taking an hour a day to run or surf. 9. Get brave and tough.. People closest to you are going to hurt your feelings, and give you unwanted advice. Head them off at the pass and tell them that you are on top of all the research and protocols (you need to be), that this is going to be stressful, that you are so grateful for their support, but that the things you can't have them do include _______. For me, it was advice on how to parent...like when my daughter would be defiant, or when I chose to keep her out of the public eye when her tics and chorea were severe. Doing that up front will save all of you a lot of misunderstandings down the road. The "Loving but Uninformed" in your life will give you some bizarre advice at times; take it in the spirit in which they meant it. At the same time, get soft. For me, this meant learning to accept help from other people. I have always prided myself in being able to be self-reliant, being able to do it all, but with this spectrum of disease - forget it. I have learned that letting people help is not a sign of weakness, but an acceptance of kindness that can really make a difference. The people around you who really care want to help. Let them. 10. Slow down the clock. You aren't going to get it all done. At times you are going to be late to school. Sometimes you won't get to a place at all. You might even miss a major life event like a close friend's wedding, or as it is in my case...your chid might even miss a year of school. It will work out. 11. Read it all, get informed, stay on top of it...and then walk away at times. You cannot live and breathe this everyday without becoming obsessed in an unhealthy way. My daughter loathes it that I pick up on every tic, and my husband got tired of my talking through the study results in the third standard deviation for the sample size of 12 for the methylation of a certain gene expression (whoa, sexy AND romantic) when we crawled into bed at night. (The main reason I come and go from this website .) 12. Go out at a minimum of twice a month for the evening. The only rule: Thou shall not talk about thy child or thy child's disease. Also keep something out there a month or two away to look forward to...beach, trip to parents, buying a new sofa, camping trip. Finally, don't forget the healthy siblings and your SO. As much of a nut as I am about healthy eating, sometimes a little love and acknowledgement is as easy as a box of walnut brownies that can be mixed and tossed in the oven in two minutes...with a PostIt note alongside. After two years of IVIG, Cellcept, Rixtuximab and Cytoxan, we are finally knocking down the world's most persistent immune system and our daughter is slowly getting better. Chorea is gone, tics gone, OCD gone, moods better, tremors gone, ataxia gone, mutism gone, catatonia gone, sleep patterns good, aversions gone, eating well, engaging with the family, smiling, laughing and has some quality of life. Long story short: Treat physically and if a child like ours (who is probably one of a handful of the most profound expressions ever on this disease spectrum) can get fully back on the happy and healthy track - yours will too.
  5. 1 point
    Chemar

    Mumbling swear words

    Hi I do understand how you are feeling as my son went through a bout of coprolalia (cussing/swearing) tics when he was 10 and it was hard for him as well as for us (he does have a Tourette diagnosis, genetic from his Dad's side) Coprolalia is recognized as a vocal tic in Tourette Syndrome. All TS tics are involuntary, so that makes the struggle when dealing with "socially unacceptable" tics even harder, especially as often having people notice or comment makes the tic even harder to suppress. My son had Cognitive Behavioral Therapy, and that really helped as he was able to learn ways to substitute words or say the bad ones under his breath. A good CBT therapist can really help tremendously...but it was our experience that it's best to have someone who understand TS He is 30 now and living a productive life so please know there is hope, even after the multitude of assorted tics that have waxed and waned over the years. Things were at their worst for him when neurologists and psychiatrist put him on those very strong prescription drugs, so just do be informed before you accept prescriptions from the doctors etc you are planning to see. I know not everyone reacts negatively to the meds, but when they do, it can be long lasting and very seriously detrimental. We found tremendous help by addressing his diet, environment, allergies etc and supplementing with nutrients he needed. We also used a number of other alternative treatments that made a very positive impact. I have an old thread that gives some info on what we did to help him https://latitudes.org/forums/topic/687-the-treatments-that-have-helped-my-son/ I would also encourage you to look at the section on the ACN/Latitudes website on TS tics https://latitudes.org/conditions/what-is-tourette-syndrome/ Also the very helpful resource books by Sheila Rogers on natural treatments for tics/Tourette and learning what triggers tics https://latitudes.org/store/natural-treatments-for-tics-and-tourette-syndrome-book/ https://latitudes.org/store/tourette-syndrome-triggers-book/ I hope this helps a bit, and that you will be encouraged in knowing things can get better and there is much reason for hope!
  6. 1 point
    MaryAngela

    Mycoplasma results

    My DS responded very well to Clarithromycin after showing high Mycoplasma titers. It’s common for kids to get yeast issues from antibiotics even while taking probiotics, so it’s important they have the probiotic 2 or 3 times a day. Be sure to space the probiotic at least 2 hours away from antibiotic. I’ve used Gutpro (expensive) and Jarrow (reasonable). I wouldn’t skimp and use a generic grocery store or drug store brand. Yeast can cause issues itself. I also give my DS a yeast control supplement, especially while on abx, and for a few weeks after. We’ve used Candicid Forte and OrthoFlora yeast support (Protocol for Life Balance). I’m sure Whole Foods also sells yeast control supplements. I prayer that your daughter finally gets some relief from the abx. Keep us posted.
  7. 1 point
    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.
  8. 1 point
    I've been dealing with tics since my childhood. I am 24 years old. I've tried tons of methods. I've found 2 good ways by myself to reduce tics. I have Neck moving right and left, breath out many times loudly and tighten my legs etc. So I've tried to push tics away, not responding any pressure any tics but made worse and then I've tried to direct my tics. Let me explain with my poor english. First tip; My goal is reducing "visibility". Because i'm tired stopping tics completely. When I feel the pressure to "breath out or neck moving"(more visible tics) i tighten my legs(less visible side). It's like guied the tics over my legs. I feel like the energy want to comes out so i let the legs do the job until feel relaxed. When I tighten my legs 2 or 3 second the pressure was gone and in public that would be less visible. Second tip; I've directed myself to do all tics "only" at home. I've worked on this about months. I've hold my tics in public or school. If I can't hold the tics anymore. I go to toilet or some place that I can be alone I release my tics and when i feel relaxed i move on. So when I get home I don't do over thinking about tics , I do tics so hard I've never stop any pressure, I do all tics and realesed myself. I am 24 , it took almost 18 years I've reduced %60 percent of my tics. Last of all being overweight and drinking too much coffee increase my tics so i walk 20 minutes everyday and drink coffee once a week.
  9. 1 point
    Stacie M

    Hand strength

    Oh this is so helpful! I will definitely be doing this tonight. Thank you!
  10. 1 point
    Hi Sunflower78 So sorry to hear of what you are going through. As a mom who was in that same state of anguish almost 20 years ago, I absolutely understand. But I so agree with Sheila that you should not blame yourself. There are so many possible causative factors that can trigger tics. We can beat ourselves up, or we can focus on trying to find the best ways to make things better. It was thanks to Sheila and this forum that I was able to follow the latter course, and thankfully things started to improve for my son. In our case, my son does have a genetic TS component, but even so, many things we learned here made such a difference in helping to manage his tics. I do think your pediatrician may be way too quick to say Tourettes! Unfortunately many mainstream physicians really are not keeping up with so much info that is around about other possible tic triggers. I am at work so I can only do a quick reply now, but I would greatly encourage you to just start reading up on as much info here as possible and also on the main ACN/Latitudes website https://latitudes.org/ Sheila's books and articles have been a tremendous help to so many as well!
  11. 1 point
    We found the best B6 to use was the activated P-5-P form. European Union countries outlawed the food dyes and other dangerous additives a while back! Shocks me that this country hasn't especially as natural food dyes do the job well without the danger! (eg beets, blueberries etc.) M&Ms in England have these natural colourings so there is no real reason imo that they can;t use them here too!
  12. 1 point
    Yes, chlorine was a major tic trigger for my son! Even though it didn't show in his list of actual allergies, more detailed testing showed he was very very sensitive to it, as to many other chemicals. Later testing confirmed he has MCS (Multiple Chemical Sensitivity) which is why both environmental and food additive chemicals impact him so intensely, including chemical perfumed/fragranced items etc I found some excellent online resources over the years to make my own household products, and always select fragrance free/dye free options for laundry, toiletries etc and of course no artificial food dyes or other artificial food additives.
  13. 1 point
    MaryAngela

    Is this pandas

    We found 3 doctors in Illinois that immediately (after seeing bloodwork) recognized this as PANDAS and/or Autoimmune Encephalitis). Unfortunately none accepted DS medical coverage. The first said that if we could not get insurance to pay for IVIG, we needed to “beg, borrow or steal” to get it, or he would be institutionalized. By this time we had already gone through our savings (including retirement savings) due to unpaid time off and unpaid medical expenses. We used crowd funding to pay for first IVIG. We saw immediate improvement, but it was not lasting. We stopped seeing first two PANDAS MDs, mostly due to location, cost and accessibility. Third MD ordered Cunningham Panel and was able to get IVIG covered under AE. Although this doctor does not take DS insurance, IVIG is considered a prescription and it is covered. I sometimes see on these posts that a child may only need 1 or 2 IVIGs. This was not the case for my DS (possibly because the illness went untreated for so many years). For your daughter, 1 or 2 may work. Read the book “Saving Sammy”. Beth Maloney’s son was cured with antibiotics alone, but again his illness went untreated for maybe a year or so. I think that’s what makes the difference. I believe it’s important to find a doctor experienced in PANDAS/PANS, not just someone who is open to the possibility and willing to give you antibiotics for a period of time.
  14. 1 point
    MAMA3

    Tics and use of essential oils?

    I know exactly what you are feeling. I spent day & night trying to find hope, trying to find anything to help our son. I was very sad, so scared & very angry some days. I prayed daily God would take it from him & give it to me. I didn’t want to talk to anyone about it either & I was extra protective of him. I was so thankful I found the post regarding oils. It gave us our son back emotionally. He struggled so much at school. I also had a talk with all the parents we knew from school. I explained to them what he was dealing with and asked them to talk to their kids(his close friends) & explain to them he can’t control it & how hard it was on him for everyone to constantly ask what was wrong with him. They stopped asking & they actually started watching out for him if someone was ugly too. The oils helped so much with his emotions & also helped him relax more at night. I recommend the lavender & peace and calming at night. The valor promotes courage & strength & along with stress away helps to relax him at school without making him sleepy. The vetiver helps to relax their brain/mind, again without making them tired. I also wanted to mention that we also tried the magnesium supplements, but stopped after his bloodwork showed he was not deficient on any vitamins/minerals. I know what you’re feeling & you’re not alone. I now tell our story on Facebook & have had people reach out to me also. I once felt like I shouldn’t talk about it & that no one would understand, but it helps so much to reach out like you have. We need to educate each other & share our stories & show others that there are more natural approaches. As my husband mentioned earlier, I also recommend you meet with a neurologist just to get clarification. We had bloodwork to make sure he was not missing key vitamins & minerals. The Guanfacine tablet does make a difference. Our son is proof that it is possible to have tics & still have a happy, normal life. I am here if you need anything, or have any questions.
  15. 1 point
    Cmac

    Need to vent

    Maybe a PANS/PANDAS specialist could do a Skype/phone consult and at least give you a script for all the blood work? Also this thread has info on doctors people here have seen and I think various states are mentioned.
  16. 1 point
    MaryAngela

    Need to vent

    I know that “inexpensive” supplements can add up, but we also used 5-HTP for our DS. It was recommended by an otherwise unhelpful psychiatrist. This was when DS was at crisis level. Need to use on empty stomach. I was able to get DS to and from bloodwork appointment on public transportation because of the 5-HTP. I don’t recall why we stopped using it. This was in 2016. I believed we stopped a couple months later when we finally found a doctor to prescribe high dose of Augmentin. What form is your Oil of Oregano? Again, we saw improvement, but used a high dose. 15 drops of undiluted 5x a day (mixed with orange juice). Something else we use as antibacterial and anti inflammatory is tea made from ginger root. I grate a hunk of ginger root and steep it in boiling water, then strain. It’s pretty spicy, but we like it. We’ve been chilling it and using as an alternative to unsweetened iced tea. At the risk of bombarding you with information, those were a few things I thought of.
  17. 1 point
    Robinhubb

    Need to vent

    Yes we just used a doctor thst didnt use my insurance...he just ran strep teiter thats it. Called my kid crazy and left. Im not totally against phych drugs but thats what drs immediately put her on because they dont know whats wrong. Frustrating!!!!! Ty so much. I know we will get thru but being in the storm is always rough
  18. 1 point
    MaryAngela

    Need to vent

    My heart breaks for you and your family. Since your DD’s onset is recent, there should be so much hope...if only the doctor’s weren’t working against you. What bloodwork did they run? Did they check for Mycoplasma Pneumonia? We spent years trying to find someone to evaluate our DS for PANDAS/PANS. Ultimately we used doctors that don’t accept our coverage or any coverage.
  19. 1 point
    prestopony

    Supplements

    I'm sorry you're having trouble getting a doc to help, it's so frustrating. This board was so helpful to me. Like many kids, my 15 year old daughter was diagnosed with PANS after many years of suffering. She is on a lot of supplements, so it's hard to know which ones are really successful! We use: Enhansa for inflammation - follow the guidelines for slow introduction, we noticed a big herx as is said might happen. For anxiety, we use CDB oil and Lithium oratate. Her 23 and me showed folate issues, so she takes Methyl Assist. Magnesium Citrate along with Buffered Vitamin C for constipation (as needed, which used to be all the time at the beginning of treatment!) - I can't stress enough the brain/gut connection to think about during treatment. She takes Thera-lac probiotic too And Super Lysine Plus for immunity support. To balance out the stress of so many years of anxiety and poor sleep we use Cortisol Manger, and Seriphos - I think these are at the bottom of the list of what I think has really been helpful though And, she is on the low-FODMAP diet Upon initial diagnoses, her PANS doc put her on Augmentin which was amazing. Came off of it, flared, tried Zithromicin, didn't work, went back on another month of Augementin, came off of it, and stayed well. During flares, unless her bloodwork shows something, we use a month of Naproxen (regular over-the-counter Aleve) - and it works beautifully. So, treating the inflammation seems to be key during flares. I would think also that a too-short supply of antibiotics is not going to help. Now, my son, who does not have PANS that I know of, but is suddenly dealing with extreme intrusive thoughts and OCD (my daughter's was just EXTREME separation anxiety and EXTREME generalized anxiety) I'm taking what I know about inflammation and scouring this board for help - and trying some things with him: NAC - an amino acid that has had some documented success helping OCD in larger doses L-Theanine - another amino acid that promotes relaxation and calms the brain and elevates GABA and serotonin I just started him on Enhansa last week. Reason being we just found out that he's allergic to EVERYTHING - grass, trees, weeds, mold, dust, cats, chickens (we have eight), dogs (we have three) guinea pigs (we have two). So he has started allergy shots, but in the meantime I can only think that there is inflammation in him from all of these undetected allergies. His probiotic is called Mood-Super strains - with strains that are geared specifically towards anxiety and depression I just learned about this product yesterday from my sister-in-law. My son's cousin, who has OCD, takes 5-htp (another amino acid) and he says it helps a great deal. She uses the Natrol brand. He does not take any pharma for his OCD/anxiety, and said when he stopped taking the 5-htp he noticed he felt a lot worse, so he now takes it again. As far as pharma for my daughter for her anxiety, we held out as long as we could, but she became unsafe and jumped out of a moving car. So we eventually we put her on an SSRI - it worked a bit, but never really well, so we switched to another, it also worked a bit but never really well, so we added in another, which, as expected, worked a bit, but never really well. Fast forward to a year after PANS diagnoses, and this truckload of supplement she takes!, she is off of all pharma, she took a class at the local high-school (and I didn't have to sit in the class with her, lol!), she now sleeps over at friends houses, and is enrolled in the Community College for the fall. So while the psych meds helped a bit, they were not the final answer for us. Sending you good thoughts for your daughter - and lots of good thoughts for you too! Hang in there mom!
  20. 1 point
    MaryAngela

    Follow up blood work

    After suffering with OCD and intrusive thoughts for over 3 1/2 years, we finally were able to get a rheumatologist to prescribe a high dose of Augmentin for 30 days for our DS in 2016. During the 3 1/2 years we tried unsuccessfully to treat his symptoms with pharmaceutical meds. The doctor let us start the abx before his bloodwork came back, which ultimately showed normal Strep titers. She said we may continue the abx for the 30 days if we chose to. He had no response for the first ten days, but on day 11 or so his symptoms began to rapidly improve. Again, his bloodwork had come back normal. I think if the infection was too far in the past it doesn’t show up on the bloodwork, although the misfired antibodies continue to attack the brain. The Cunningham Panel is what got the PANS diagnosis for my DS. With PANS, there are 3 things to address: the infection, the inflammation and the immune response.
  21. 1 point
    Sheila

    Help form China

    Hi Jasmina, Your English is very good and we were happy to hear from you! It is good to learn that you have found a way to get help for your son. You have made some good starts. I'm sorry not to be able to give you suggestions on amounts of supplements for detox but can say that the amount you are giving of B6 is quite low, nothing to be concerned about; (you can check with your doctor about using more). Some people need to take it with food to avoid stomach upset. In addition to the approaches you are using I wanted to mention that it is important to avoid potential triggers that may be affecting him. Triggers include diet and also things in the environment. We have a book, Stop Your Tics by Learning What Trigger Them -- and it was just translated into Chinese. The concept is that if there is something aggravating his system, it is best if it can be avoided and this will also help other approaches be more beneficial. The publisher gave me these two links for the book in case you are interested. I don't know how it works with you being in China and trying to order from Taiwan, but I hope this could be of some help to you (please let us know if you decide to do it): FROM THE PUBLISHER: You could find the complex Chinese edition on our official website:https://www.wunan.com.tw/bookdetail?NO=14327 Or on Books.com.tw:https://www.books.com.tw/products/0010820544 (Books.com.tw is the biggest online bookstore in Taiwan) We are looking forward to hearing back from you, Jasmina and hope you can find all the answers your son needs, Sheila
  22. 1 point
    When I was young, I used to take apart old computers, turn them on, and then watch what happened as I took my ground probe and touched different circuits. I could get all sorts of colorful patterns on the screen, but oddly, never the same pattern twice. I think PANDAS is a little like that. The immune system goes crazy and generally in a predictable way. But it's also different with everyone and even within the same person, it changes. I know my daughter has pandas, but right now, I wouldn't say that she is really OCD. She has been really bad in the past, but right now, it doesn't hamper us too much. To me, most mental issues come down to identity. If something in my daughter's day implies that she is stupid or fat, she gets super distressed, even suicidal, filled with rage, and then depression. This is tricky because kids aren't dumb. If you do too much for them, they think they are stupid and that can trigger a downward spiral. But, if you don't do enough, or imply that they need to do more, it can trigger that they are not loved, and BOOM. I think, because of the increased sensitivity because of the over-active brains stuff, destructive mental loops can be very harsh on these kids. I try to set rules that are "necessary" and be pretty lax on other stuff. My daughter likes to change clothes 10x a day, then complain there isn't anything to wear. Convincing she that wearing something twice, if worn for a short time is OK, has been tough, but laundry is once a week. She has to work within that. She doesn't like it, but she doesn't freak out anymore. I don't lie to my kid, but I think of things to say that can build her self esteem back up. Getting her to realize that she WILL get her feelings hurt and need to continue on has been tough. Just today, some off handed put down from her cyber school teacher had her in a tizzy for 15 minutes. But, it was only 15 minutes and not 6 hours (or even days) like it has been in the past. Suicidal feelings are actually confused survival instincts. When the consciousness feels like it has changed too much from what it was, or has been rejected by those it loves, it wants to hit the reset button, (assuming its self immortal (which is another discussion.)) So, the suicidal expressions can really require some quick reassurances that you still love them and even if this stuff is really crazy, you will always love them. It can seem like you are carrying a lot of their personal responsibility for self preservation, but having gone through this, that is something that you can teach later.
  23. 1 point
    Note: This has been approved for posting by Forum administration. For any that contributed to this genetic study that we posted here (and elsewhere) - thank you so much! The cutoff was last night, and we had a great result - 71 sets of data. I will post some tidbits of "aggregate" results here (and in the other groups this was put in). I am wary of posting full results on facebook, because then facebook could claim some ownership. Instead, full analysis results (data in aggregate form only) will eventually be posted here: https://osf.io/pf7q2/?view_only=ba9efeabb38e4a22adced3b5ba4dc5a5 That link above is live to the public now, and you can see (in the last revision of a registration plan), what are the 78 SNPs that we have looked at. We are going to look at many more SNPs, though, and do lots more analysis than what is listed there. The plan was just to lay out in advance what we could declare as significant in this pilot study.
  24. 1 point
    Hi My son with TS/Crohn's had abx sensitivity and we found Olive Leaf Extract, Monolaurin (Lauric Acid), Oil Of Oregano (capsules) and other natural antimicrobials very helpful, including dietary garlic, honey etc. I don't have experience with these and PANDAS
  25. 1 point
    evemac

    Tics or tourettes

    I know it's hard not to despair, but my son who is now 14 was diagnosed when you was 5. We did so much for him: diet/vitamin protocol, Occupational therapy, chiropractic work, meds, CBIT, and I would say to some extent, all of these interventions helped. He feels pretty comfortable talking about having Tourettes and while he did have some difficulty with peers on occasion and I had to actually request a 504 by 8th grade to deal with the dysgraphia, I also give his teachers a well written article on disinhibition and what that could look like in class. I think advocacy and self-advocacy is important to our children with TS. Unfortunately, people still don't really understand it but the best news is is my son has gone through this and is a strong academic and athlete and what's even more important than that is that he likes who he is! Keep up the good fight. I remember crying at night with him when he was ticcing so hard he couldn't sleep. I have been there! You are not alone! Eve
  26. 1 point
    Gpookie

    will Normal return?

    I wish I had words of encouragement. What you described is exactly my husband. For 20 years since I met him, he exhibited odd behavior, zero executive function, cognitive deficits and arrogance and ODD through the roof. After I nearly had a nervous breakdown five years ago, he had some psych testing: extreme ADHD and NPD. However, with his 4 PANDAS kids ( 2 from a previous marriage), I had him tested for Lyme. Lit up like a xmas tree. Also PANDAS. His whole life is one drama to the next, yet he sees it all as something being done to HIM, while anyone he comes into contact with suffers. He is being treated for everything, but unfortunately with treatment for Lyme, Pandas, etc., those symtpoms have gotten better, and he regularly goes to therapy, but the NPD (arrogance, self focus, lack of empathy, etc.) Is increasing in leaps and bounds.
  27. 1 point
    MaryAngela

    IVIG at 25

    My son’s case was severe. We were in a very dark place multiple times, sometimes lasting over a year at a time. Looking back, I don’t know how we survived. What kept us going were those times of reprieve, like you experienced after your tonsillectomy...showing that there is an answer out there...but just needing to figure out how to sustain it. My son responded well to tonsillectomy, antibiotics, NAC, IVIG, but nothing with complete and lasting results. He is now receiving monthly HD IVIG at least until the end of the year. His tics have been gone for the most part for over a year. His OCD improved somewhat after 1st IVIG, but it wasn’t lasting (that is why I recommended testing for Mycoplasma Pneumonia first). His OCD is about 85-90% improved, but he still has major sensitivity to sound and odors, still has anxiety and focus issues. He just started an herbal antiviral and an herbal antibacterial. We plan on trying either the Paleo or Ketogenic diet soon. Watch the documentary “The Magic Pill” (currently on Netflix). It is amazing the impact diet has on physical and mental health. Also, Joe Rogan has a regular guest on his podcast, Chris Kresser. He promotes the Paleo diet and once used a specific example of a child with PANDAS symptoms (although he didn’t call it PANDAS) that was cured using the Paleo diet.
  28. 1 point
    Hitman3161

    IVIG at 25

    Thanks guys for your response. This is an unnerving time for me. Although, after the operation I was able to achieve complete symptomatic remission for 3-4 months and enjoyed a good period of health. I have responded positively to every treatment intervention so far. Positive response to abx, tonsillectomy etc. I understand that it may not work at my age, I have had a lot of social stress to deal with as well which has probably exacerbated the symptoms - I’ve dealt with social isolation for many years. I am going to trust my gut and go ahead with the treatment, I’ll keep you posted and updated for the benefit of others - as I’ll probably be one of the oldest to receive treatment and success would be highly reassuring for the rest of us adults. Thanks so much for your support. fingers crossed 🤞
  29. 1 point
    edsonr

    My Sons tics, sharing our story

    Hello I just wanted to share my story, and maybe it will help others. I'll try keep this focused and straight to the point. My son started his "noticeable" tics on Christmas eve 2017. Pediatrician said it's command and would go away, just not sure when. I started to get more and more concerned as frequency increased, at times it would be several times a minute. He had motor tics with his arms, then later shoulder shrugs, then neck turning, and facial tic (that we thought were just too much screen time). No vocal tics noticed. He had a bad diet being a bit picky, and would eat lots of candy, he would also get lots of tablet time. I had my share of sleepless nights thinking and worrying about him. I tipped off about the book "Natural Treatments for Tics and Tourettes..."..and that book, lifted my spirits, inspired me, gave me hope, and energized me to help my son. Here's what I implemented at home: (mind you, the night before I started making changes, he was sick with a fever and tic'ing restlessly) Bought magnesium gummies to give him Bought fish oil Cut the high fructose out of the diet started removing artificial flavors and colors cut down on screen time When he was sick for about a 8 day stretch, I started the plan above. He already hadn't been eating much since being sick, but we I started giving him magnesium supplement. He probably had magnesium supplement for about 6 days then he got better. We noticed immediate turnaround, for a good few days I didn't see 1 motor tic, which was going from several times a minute to maybe 1 all day. Just seeing it stop for 1 full day, confirmed to me that there is something we can do despite what the dr's say. We started to be more conciseness about what we feed our kids, and tried to get more nutrients in them. I had to explain to the both kids, that we all need to eat healthier, so we need to stop eating stuff that's bad for us. My son was all in, he always asks now if a certain food is healthy. About 2 months into being more healthy his motor tics were probably 90% gone, but he still had some facial tics. The crazy thing is even though he made great progress, just seeing a tic here and there could still sink my spirits. Thinking about his bad diet and him not being regular with his stool, got me thinking he may have leaky gut and that maybe he's not absorbing nutrients well. I know the battle may not be over yet, but I'm happy to report that he hasn't had a motor tic that i've seen in about 2 weeks, and the last week have not noticed many facial tics. This week he's also been more regular, going #2 every other day (previously it was 1-2 per week). What we're are currently doing: Supplements: Smarty Pants Multi (whch has omega 3) Smart Calm Magnesium gummies (they loooove, the taste of this one) Fiber gummy probiotic gummy Eating / Food: No High Fructose No Artificial Flavors No Artificial Colors Fruit / Veg smoothies Buy Organic when we can Cut down on fast food - there was a happy meal or 2 in the last 2 months Candy is not an everyday thing, special occasions and rewards Other: Cut down screen More board games Playing outside I still allow them to have candy here and there, but nothing like before. I just still want them to enjoy being a kid, so even at birthday parties, I'll let them splurge. I hope someone can takeaway something from my post, I know reading posts from others often lifted my spirits while I was going through some hard times with my childs tics. Feel free to ask me questions.....
  30. 1 point
    My son does not have Lyme, and the Ozone helped somewhat. The Cunningham Panel has become the standard lab used to show there is an autoimmune component to OCD and tic symptoms. Based on the results of the Cunningham Panel, my son’s doctor is treating him for autoimmune encephalitis. Do a Google search on Cunningham Panel or Cunningham Panel PANDAS. You can probably search within this forum also.
  31. 1 point
    Our son also had brief "absence seizures" at the beginning. We eventually tested for lyme, bart, babesia and others, but only ever found ehrlichiosis (another tick-borne infection).
  32. 1 point
    Others have provided some responses, but I would like to offer some input on the freeze while playing piano. Freezing while doing something can be classified as absence seizures. While usually pediatric in nature and outgrown, there is a similar symptom from Bartonella. So if your son is diagnosed with bartonella, this might be something triggered by that.
  33. 1 point
    I am so sorry you are going through a crisis period. Here’s what I can tell you from my experience...Two years ago, we finally found an MD willing to prescribe abx for my DS (now 13). His case was severe. 10 days into the 30-day high dose of Augmentin, be began to rapidly improve. It was nothing short of a miracle. Unfortunately, there was a 10-day gap between the 30-day high dose and the prophylactic dose, and he regressed, and were never able to recapture the success of the first abx. That summer my DS developed a yeast infection, and his symptoms escalated. He was out of his mind...hallucinations, new tics, aggression. For the past two years we have treated him for yeast. We use Gutpro, Saccharomyces Boulardii, and Candicid Forte. We have also tried rx yeast treatments (Nystatin). Had a scary experience with Diflucan, though. Currently my DS is not on abx. When he takes them, it’s always a matter of time before it impacts his liver function, and has to go off. He’s using an herbal antiviral, and he has had many IVIG treatments the past 15 months.
  34. 1 point
    I'm a little late but have to respond because our symptoms change meant that we - who were experienced with PANDAS - completely missed the "after puberty relapse" for 2 years. Our son was diagnosed in 2010 or 11 at age 11. We, the parents found this and worked to show and educate his pediatrician about PANDAS. The symptoms at 11 years old were obvious - vocal and facial tics, tapping and counting, repetitive phrases and eventually only those phrases. But he was a happy ticcer. CBT did nothing as they said he was not anxious or depressed, but he had to do things his brain told him to do. We had this thing "licked" after a year of high dose abx. Flash forward to Spring and summer 2016 - my kid after sophomore year of college - top 5 school, national athlete - suddenly is so anxious he can't interact with high school students at a summer camp. He feels everyone is "putting him down" or "out to get him". Every interaction is stressful and eventually he would not leave the house. His personality changed 100%. He alternated between despair and optimism but often felt completely apathetic. He begged for help, kept saying "something is wrong - this is not normal" but to us the signs were invisible - no tics, no repetitions, nothing you could see. He talked to a counselor (no value). We never, ever thought PANDAS. There was no similarity to his previous diagnosis. However, his mental anguish was horrible and waxed and waned over the next two years until finally last June, after a case of strep that went untreated because he did not have a fever and was refused a swap test, he completely fell apart with intrusive thoughts and irrational behavior. Suddenly his dad said "this is completely irrational - it must be PANDAS" The ASo titers came back at 932, Cunningham Panel (now existed) was 3/5 positive. I'm telling you we had not forgotten about PANDAS but the second time looked so completely different we, who were looking, completely missed it. We're on it now but feel like he has suffered two extra years and we hope we are not too late.
  35. 1 point
    stateless

    Possibly PANDAS?

    Many years after posting, I'm checking through old accounts and thought this deserved a reply to give others hope. I notice that I had deleted my messages, but I just want to say that the very typical and rather full-on symptoms typically associate with PANDAS (OCD, inability to speak, eventual inability to walk) eventually went away, but it took a couple of years. He is absolutely fine now and I see this as fitting into how PANDAs can impact some children at a very specific time in their lives. The parents didn't ever get much help. 'Social services' for a while thought that he may have been mistreated (something I knew wasn't the case).. then the doctors switched to a diagnosis of Chronic Fatigue and never shifted from that. It really did appear to match PANDAS though and now he's fine and thriving and it all seems like a nightmare or a dream of old. It's in the past. I hope that others here, feeling desperate due to the condition and lack of help, reach the same place. Thanks.
  36. 1 point
    bobh

    Allergies? Mast Cell Issue?

    I am not knowledgeable on mast or methylation, but I see that there are 105 hits on "mast" if you type it in the search dialogue at the top right, once you are in this group. I am sure methylation will also have lots of discussion, too.
  37. 1 point
    JenniferG

    LD vs HD IVIG

    Unfortunately, my provider will only prescribe to the a certain infusion company. (He owns it). Not my preferred scenario, but kids are healing.
  38. 1 point
    To a great extent, the medical science is beyond me. But as a recall, the actual magnitude of the titer count (whether anti-dnase-b or ASO) matters as some "highs" are, in the end, essentially statistically insignificant while others are truly indicative of something amiss. My recollection is that the anti-dnase-b titer test measures a strep infection exposure that was at least 4 to 6 weeks in the past; if your son's exposure was 3+ months ago, then the fact that his titer level is still "high" by his doctor's standards would suggest that, potentially, some molecular mimicry has taken place in which the strep has exchanged some molecular material with body tissue, tricking the immune system to continue to produce antibodies to attack the "invader" which is actually "self." This is my simplistic understanding of what can happen in this autoimmune condition. For the "devil's advocate" view and some decidedly more scientific responses on these topics, I would drop "anti-dnase-b" and/or "molecular mimicry" into the forum search box and then thumb through the resulting topic threads. These topics have been discussed in some detail during previous years here, but it's been a while. And it's fairly complex, at least for someone like me. But there is a wealth of information here, if you have the time and inclination to dig through it! Good luck!
  39. 1 point
    bobh

    GF diet helped, but then stopped. Input?

    That low-grade fever and red throat seems like a clue that what he could be fighting caused the flare - if the timing makes sense. A couple of days (and possibly longer) before those fever/throat symptoms could still explain a flare then.
  40. 1 point
    I wonder whether one of the docs could consult Dr. Najjar to rule that set of concerns out. When he spoke at the beginning of the month at the Common Threads conference it was clear that ultimately, like pans, pandas some cases of encephalitis are ultimately clinical diagnoses like PANS/PANDAS. He explained that in a not insignificant number of cases, antibodies don't get elevated and one must take the entire clinical picture into account. I am wishing you all the best.
  41. 1 point
    bobh

    New member and mystery illness

    You did mention your moldy house. You can also search here for mold and find a lot of discussion - it is a recognized environmental trigger at pandasnetwork.org, which is a rich source of info in case you are not aware of it. Do you have any option even just to try a different location for a week or two, to see if there is a difference (including when you come back)? I would tend to believe that, with a lot of patience, you could find something that would help your symptoms, possibly only somewhat like Xifaxan has, but perhaps much better. It would take work and energy that you may not have. So, lean on us here, ask questions. This forum is not as fast-paced as most facebook groups, but there is to be a wealth of experience here.
  42. 1 point
    There are a few things to consider in this situation. First, how much GABA is he getting and when do you give it to him? Is he also on Theanine (it helps produce GABA)? Too much GABA can actually be converted back to glutamate, increasing that fight or flight response. You would see a jumpier, more anxious and fearful child in that case. You can try giving him GABA just once after dinner (and not in the morning). Second, are you doing anything to help him detox and excrete what the antibiotics are killing? If not, he likely needs kidney and liver support to start and perhaps something to help detox the brain. We use a homeopathic called Drainage Tone for brain detox. It really helps. We get it from our chiropractor or our doctor. Finally, when you start killing bacteria with the antibiotics, often yeast is released too (it hides in the cells with the bacteria and viruses). So, look for signs of a yeast flare. Perhaps treat with an anti-fungal like Nystatin or Lauricidin. Makes sure he drinks lots of water, give him epsom salt baths to help with detox, and, if you have access, a dry sauna. Hope some of these suggestions help.
  43. 1 point
    Joyle

    Where to find Clerodendrum Inerme extract?

    Hi everyone, Yes, the plant Clerodendrum inerme does work to reduce tics and other comorbids very effectively. We have discovered it doesn't work for everyone but it has helped many. The Facebook group is called Natural Care for Tics and Tourettes. There are lengthy discussions there about this plant which we have nicknamed cleo. It can be taken as a green juice or in capsules after dehydrating and powdering the leaves or as a tincture or as a homeopathic remedy. The only restriction is you will need to source the plant and grow it in a pot or your own backyard. The safety profile of the plant is exemplary. Please also do your own research to satisfy yourselves .... there is a wealth of information about Clerodendrum inerme on the Internet. Kind regards, Joy
  44. 1 point
    My 10 yr old son was diagnosed with PANS by an integrative medicine doctor by the name of Mae Kinaly in Irivine, CA. We live in Manhattan Beach in LA county. She did a ton of blood work, in depth history and immediately started him on azithromycin and supplements. She is a little kooky but I feel is a very in depth doctor with my son's best interests at heart. She does offer IVIG. We also went to Dr. Miroslav Kovacevic in Chiago for a second opinion and ultimately IVIG. Hope that helps.
  45. 1 point
    Hi bobh, Thanks for the reply. After reading Shiela's book on Natural treatment for TS, I started to dig into the blood test that the hospital did for my son. I found out that the strep Titer level was only at 200, which means negative for strep infection for my son. So thinking back, it was possible that the abx (penicillin) might have aggregated the tics. Anyway, since my last post, my DS' tics has improved great deal, from every second to not noticeable. In fact, my DS is telling us that he rarely has tics on a daily basis. What we have done is to give Fish Oil, multi-vitamin supplement to my son in addition to Chinese Herbal medicine drinks. We also give some probiotics to my son. Very fortunate to have found this site. People are very kind and always want to help and share information.
  46. 1 point
    I know this is an older topic, but the easiest way to get IVIG approved is to read your policy and to go with what your policy says. PANDAS/PANS is almost always excluded. Immunodeficiency is almost always included in some way, shape or form. Whether your son meets the guidelines and what dosage he will qualify for depends on what your policy says and what your doctor orders. It may well be if he qualifies under an immunodeficiency section of the policy that your doctor can get them to approve HD IVIG on the basis that he also has an underlying autoimmune condition that would contraindicate low dose IVIG. Most IVIG policy provisions are updated yearly and there should be a date on the written IVIG coverage provisions to ensure you are dealing with the latest one.
  47. 1 point
    I'm not sure how to ask "what would be approved?", and get any info beyond what is listed in their IG clinical guideline document. That doesn't even list anti-NDMAR encephalitis -- so it's so out of date. But you're right; if it were a change in rationale, it wouldn't sound forthright. If I were to pursue the deficiency angle, I think I'd want to expand the argument and state what is the truth, i.e., that we're dealing with two problems. However ....The low dose and high dose seem to have opposite effects -- the low dose is immune-stimulatory, and the high dose immune-regulatory. So I'd be wary of making things worse by giving DS the immune-stimulatory dose. But... what if insurance were to approve say 500mg/kg IVIG product for the IgG deficiency, and my doctor prescribed 1.5 g/kg, would insurance pay for the administration and 1/3 of the Ig product, or nothing? I think I've read of someone on this site whose kid had had LD 2x, which didn't help, then the third time the MD prescribed HD and it did help a lot. So i hope the answer is the former.
  48. 1 point
    Full immune panel (IgG, IgA, etc.), ASO (strep), anti dnase B (longer-term strep titer). I think methylation issues are a VERY worthwhile trail of exploration for someone your age dealing with these issues, and it appears from your signature line that you done that. So none of the interventions you're trying for the mutations has been effective? Wombat, I don't want to discourage you from exploring every available avenue, but as the mom of a now 18-year-old who was first diagnosed with OCD at age 6, didn't get a PANDAS diagnosis until age 12, responded very well to abx (brought him back from a totally dysfunctional brink), but continues to deal with some ongoing OCD and anxiety issues (though manageable) . . . I just want to encourage you to perhaps not get hung up on the testing and interventions tied to traditional PANDAS/PANs (rapid onset, pre-pubescent expression, abx, IVIG, etc.) and perhaps lean toward more "lifestyle" type interventions that will hopefully help make life more functional, more fun, and help you push away more of the OCD that interferes with your everyday life. If you do yet have underlying infection, be it lyme or strep, etc., then abx, IVIG, etc. will likely help you to an extent. (How long were the course of abx you've tried in the past? Can you get a longer-term prescription for them and journal your behavior patterns for a period of months? We found that, after the initial "burst" of palpable benefits, abx tended to yield more subtle improvements over time . . . perhaps unnoticeable to a majority of people, but by reading back through our journaling of things our DS used to do but didn't need to do anymore, or things he'd given up to the King OCD but had begun to resume as he improved). But just from our experience, having contended with OCD for as many years as you have, I would not want to lead you to believe that abx or IVIG will be a panacea -- a cure-all. And if either of them is to be effective, IMHO, given your age and the term of your dealing with this condition, I'd wager that that you would need a longer and/or more repetitive course of these medical interventions than might be the case for a younger, more recently diagnosed case (our DS took abx for about 2 years). Additionally, I would suggest dietary, supplements, ERP/CBT and perhaps even some prescription medications to help you gain more leverage over the OCD, even if only as temporary measures. In the end, the PANDAs tests and interventions turned our DS's life around, but even so, he continues to need supports. Whether that's because he was older and the anxiety/OCD was more entrenched by the time we determined the immune condition, or if it's because it's genetically part of who he is and the PANDAS just made it worse, I can't tell you. But I've made my peace with throwing everything at this monster that's at our disposal, and that methodology, in the end, has given my DS his life back. Keep fighting, keep searching and never say never! All the best to you!
  49. 1 point
    Our son is a couple months from 11 now. He started the famous eye blinking at 8 and did the body jerks (arms, legs and some head) a couple months later. They waxed and waned for about 4 months then stopped. He still has some facial tics, mostly some eye blinking, then nose twitching and eye brow furrowing but the jerks never came back. Even now his tics are so minor no one but me seems to notice. He goes for months with nothing, the last week he has had some eye brow furrowing, but he has been playing games on his Game Boy and this seems to be a problem. This has been a long journey for (mostly me) us. Since this started, we have now have him gluten free, clean foods, Kids Calm and Bonnies TS Control vitamins. This program seems to work and he is about %95 tic free. Even when he does get a tic, it is only one and they typically last for a week to 10 days then stop. They will start back if he has anything with wheat or food with either artificial stuff and or chocolate. I have found Natural Remedies Tic Tamer to really settle the tics down a lot when he does get them. I believe he is growing out of the tics, he seems to have the less often and less severe the his original ones. I absolutely hate these tics, and even today with his eye furrowing, made me feel very depressed and mad. I have come to realize this is my problem. He gets upset if he sees me upset about his tics, but I don't think they bother him that much. He would rather play his games and eat candy (sometimes) and knows they will give him tics. I want him to be a kid, so I don't want him to have bad memories of these precious years. I am so glad he is getting a little older so he knows what will give him tics now. A little background: No family history of tics or TS He is very bright, no other commorbid issues. Never had any vocal tics yet They bug me way more then him His tics have made me love him more then I ever thought I was capable of, and I pray that one day he is over them. Until then, I have learned to take one day at a time. I use to have those butterflies in my stomach just waiting for him to get off the school bus hoping they would be hardly noticeable. I travel a lot and still ask my wife every night "how are his tics?" Not sure why I decided to write this, just felt compelled and hoped I could offer some help. I feel like I went through the darkest days of my life since my father passed away 11 years ago and will leave you with this: He will get better and so will you. Lenny
  50. 0 points
    Hi, I've posted before about my son, 7 who has had PANS since 4 (Lyme, Bartonella, etc.,) but was only diagnosed this August. I'm hoping if I share someone will have some insight. This board is so full of knowledgeable, kind people. My son has always flared in the winter months, usually Jan-May. In the past his symptoms were ADHD, mild tics, movement issues, mild OCD, difficulty remember things, what looked like absence seizures, severe anxiety, panic attacks, hoarding, depression, intrusive thoughts, separation anxiety and severe sleep issues. However, this summer, though he did improve in some ways (his anxiety improved), he never got back to his baseline. In August, he tested positive for Lyme & co and was diagnosed with PANS and we began treatment with antibiotics and supplements. We also took him off gluten at the urging of our Llmd after genetic test revealed he had a good chance of being Celiac. We saw immediate improvement. For the first time in years, my boy was back. It was amazing, but, short-lived. In November things were a bit bumpy and then December 1st he had a big flare that continued through most of February. However, symptoms were different then they'd been in the past. He had a lot more OCD which mostly looked like tapping his body and walls, etc. He was fairly anxious, though not as severe as in the past (no panic attacks). Our doctor took him off all medication for two weeks to see if it would help in January. It didn't help. Things got worse and so he was put on new antibiotics (Amoxcicillyn and Bactrim). They seemed to help. He had two great weeks in February and things seemed to be better. He was happy again, playing with friends, etc. Then about a week ago, panic attacks began again and now, suddenly, he won't drink anything unless I take a sip first. If I cook, he wants to watch me cook to make sure it will be "safe" for him to eat. He won't eat if he accidentally touches his food with his fingers because they might have touched his hair or the floor. He's never had any issues with contamination/eating issues before. This has all happened so quickly, and I'm so scared it is going to get worse. Two and a half weeks before this most recent flare began, he had the flu. Could that be the cause of this- or is it too long in the past to be the cause? Why would this flare be so different from past flares (he still seems mostly calm and happy)? Why is he still flaring? Shouldn't he be getting better with a diagnosis and prophylactic antibiotics? Please tell me if there is something I missing. Feeling desperate and overwhelmed. Thank you.


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