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  1. 3 points
    Priscilla

    Possibly PANDAS?

    Funny I just got a notification from this response. I have not been on this forum in a very long time. I am so happy to report that I have a very healthy happy 16-year-old daughter who is no resemblance to the child that was in such turmoil. I will however say it has contributed to the person she is kind, compassionate and confident. I just went for an IEP meeting today which we did not even try Start one until eighth grade where things got worse before they got better but I have to say once over the hump of entering puberty things really started to balance out. She has not used one accommodation from her bare bones IEP she has good grades healthy social relationships and almost no residual OCD. I hope this gives hope to the parents that are going through this. My main advice and one of the hardest lessons I learned and she actually helped me see it was not turning her into something that needed to be fixed with all the desperation of trying to find her help she did feel like that for a time. Funny once I excepted exactly how she was whether it was going to last forever or not is when she started to get better. Sending love and good vibes to all of you and hope for a better day.
  2. 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.
  3. 2 points
    maryangela

    Adult PANDAS doctor in Chicago?

    Donald Raden, MD is an Integrative Psychiatrist in Highwood, IL. His practice is called the Raden Wellness Center. My son (age 13) has been under Dr. Raden’s care for 1 year. He saved my son’s life. He treats many young adults with PANDAS. My son’s case was severe.
  4. 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.
  5. 1 point
    h202

    Does PANDAS always have OCD and tics?

    We have a son who likely didn't have any significant tics or OCD relating to PANDAS. His primary symptoms are rages and increased hyperactivity. He had adhd symptoms from birth, but the rage and extreme hyperactivity came out of the blue when he was 6. He was always a quirky kid, but during the 6 months of his initial onset, many doctors and therapists and teachers suggested autism. After two months of abx and some trials of steroids, most of the problems had completely disappeared subject to periodic flares. Our situation is muddled by his pre-existing adhd diagnosis. He was already on adhd medication for his hyperactivity. It has been very hard to untangle four possible sources of behavior: (1) regular evolving behaviors of a 5-7 year old; (2) adhd; (3) pandas; or (4) adhd medication. Several months before he fell off the pandas cliff, he started having some increased problems in school. We increased his adhd medication. In hindsight he had a bunch of minor symptoms crop up between the time of increasing his adhd medication and his "pandas cliff" moment a few months later. Tics: Throat clearing, swallowing, sniffing, but usually only during concentrating on an activity. A significant increase in a complex stereotypy that he'd had since infancy. He developed a significant fear of spiders, bugs, hurricanes and sinkholes. But not serious enough fears that they interfered in daily life. In hindsight, we have no idea if all of this was pandas. Or caused by the adhd medication. It took almost a full year to tease out what symptoms came from what (and honestly, we are still working on it). The rages and increased hyperactivity went away on abx, so we are sure they are pandas. The fears mostly went away when we changed his adhd medication. The tics and stereotypy lingered. And then we stopped his adhd meds altogether over this xmas break, and both tics and stereotypy 90% disappeared. His pandas specialists never though the tic was from pandas - because he only did it when he worked on certain activities. And she never thought his fears were sufficient to count as pandas OCD, because they were pretty minor. She said that anecdotally she has seen a subset of pandas kids who don't exhibit classic pandas (ocd and anxiety) but instead show as more autism/stereotypy/hyper -- and that these kids are often adhd/autism-light kids to begin with. Which describes my son. Not sure if that helps your question.
  6. 1 point
    jsl25

    Does PANDAS always have OCD and tics?

    Some of the things you listed at the bottom of the post could be considered OCD. For example, my daughter’s OCD is around clothes and how things “feel”.
  7. 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
  8. 1 point
    dave401

    PANS - trying to find similar case (DD17)

    I also got pans when I was 14 and I always got strep infections, what worked great for me was having my tonsils out , I haven’t got strep since then 12 years ago. If she’s constantly catching things I think it would help. Adenoids removed too
  9. 1 point
    mamafour

    Information about Plasma Exchange

    Our daughter was treated with plasmapheresis in 2017. She has pandas/Pans but not Lyme (we think?). She was typically treated adequately with antibiotics but for whatever reason we couldn’t get that one flare under control with abx or prednisone, so we went looking for ivig. .. The immunologist we found had more success in his patients with plasmapheresis than ivig. Our daughter’s symptoms were severe at this point. It is also often easier to get insurance coverage for plasmapheresis than ivig, which is curious to me. For all these reasons, we went with plasmapheresis, and would do it again in a heartbeat. I cannot express how life-changing it was. (Two years out we may be needing it again, and if we do, I will be nothing but optimistic going into it.) We are in VA so I don’t think I can help as far as who can treat near you. However, don’t take the “it’s impossible to get in CA” and just give up.... start making phone calls. Call area hospitals and ask if they do plasmapheresis at ALL, regardless of reason. Ask which immunologists order it. Work backwards from there. You are at an advantage because of your son’s age, as the issue is often finding an apheresis unit with the capability of treating a peds patient. Your son is not a peds patient so you already don’t have that barrier! I do not have experience with Lyme related to plasmapheresis. Also don’t take the “insurance won’t cover” without checking your plan on your own. You can call and ask if the cpt code is covered (I don’t have it in front of me but could find it) and whether it needs preauth. Don’t give up. Hope I helped or at least gave hope. Good luck.
  10. 1 point
    We have not gone through similar, so can't comment too directly, only on your statement "...apparently in true PANDAS cases it [OCD] accelerates anxiety and vice-versa?" Well, I would say that OCD, if it starts more slowly in a PANS/PANDAS child, is somewhat calming at first, when it is not otherwise debilitating or noticed by others too much, because there is some satisfaction derived from "repeating it right" when they finally get there. But when it grows much more significant later (or for any person with severe OCD) the sufferer fairly quickly becomes exasperated with how debilitating it is, and sometimes satisfaction is eluded, and so of course that creates plenty of anxiety. So I think your statement is fully true for those with very quick onset of PANS/PANDAS, and eventually true for all. If you can get and afford the ivig, the potential benefits probably outweigh the risks (in my mind).
  11. 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.
  12. 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 🤞
  13. 1 point
    maryangela

    LD vs HD IVIG

    My DS 13 received 16 weekly LD (1/4 of HD) starting last November. It was extremely frustrating, because he would flare for 3-4 days, then start getting better, but would flare each time he had the treatment. In May of 2018 he had a HD. Huge improvement, which lasted about 6 weeks, then he began to decline. Had another HD two weeks ago. It was like magic. Immediate improvement. He will now receive monthly HD until the end of this year. Apparently, this is AE protocol. Could take 18 months. He is about 80% improved. His symptoms were severe.
  14. 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.
  15. 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.
  16. 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.
  17. 1 point
    MomWithOCDSon

    Disrespectful behavior

    I like "The Explosive Child," also, and while it's not specific to PANDAS, necessarily, one of the authors has worked with Dr. Swedo in her research at NIMH, so he's at least familiar with PANDAS presentations. I'm not sure it matters whether the disrespectful behavior is uncontrollable because of PANDAS, or if it's uncontrollable because your kid is so far out of his self-control that he can't stop himself from blurting out rude words or making rude gestures or whatever. I mean, yes, PANDAS can definitely mess with your executive functioning and make it more difficult to display age-appropriate behaviors. But most behavior of that kind comes from a lack of self-control, irrespective of the genesis of the lack of control. Either his brain is physically impacted so he acts out, or his "mind" is emotionally impacted so he acts out, the results are the same. And maybe the same tactics are applicable for the behaviors, as well. "The Explosive Child" has some great strategies you could try, but as I recall, pretty much all of them suggest that you de-escalate any unpleasant exchanges by dis-engaging, taking a few minutes to calm down and dial everything back, and then re-engaging again in a calm, controlled tone of voice and body language to resolve the dispute. Seems to me that could work whether PANDAS or non-PANDAS. I personally think that pretty much ALL non-age-appropriate behaviors (meltdowns, tantrums, etc.) our kids may display during this illness is at least partially -- if not wholly -- attributable to the illness. But then again most "normal" kids will test their limits during the natural course of growing up, too. So, in your shoes, I might ask myself, "Is this behavior I could expect to see out of a 'normal' XX year old?" If the answer is "yes," then maybe you deal with it as you would with any kid behaving that way. But if the answer is "no," I think you still address it, but maybe with a little extra compassion and patience, adding into the discussion something along the lines of, "I know that you're feeling especially out of sorts right now while we get the inflammation in your brain and the other PANDAS stuff under control, but you have to know that speaking/acting that way is still unacceptable. Let's try and brainstorm some things you could try instead of yelling at me/your dad next time you feel this way." My son hated being told he was not acting his age when he'd meltdown over something pretty minor or lose his patience in 0.2 seconds during his PANDAS. But I've got to be honest; I didn't do it to be cruel, but I felt like it was somewhat important that I hold a mirror up for him because I didn't want him to dig a deeper and deeper hole for himself socially. I wanted him to have some outside perspective as to how his meltdowns looked to his peers in the hopes that it would give him some incentive to work with me on some of the "Explosive Child" strategies for dialing things down so that he could "save himself" in some of those outside world situations. It was tough, and we weren't always successful. But I do think it helped him maintain some perspective, especially when he got out of that intense moment and could look at things a little less emotionally. All the best to you!
  18. 1 point
    maryangela

    Disrespectful behavior

    I recommend the book, “The Explosive Child”. It’s not PANDAS specific, but it definitely can apply.
  19. 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.
  20. 1 point
    pinkoctober88

    Ketogenic Diet for Tics?

    Ive been researching the connection for the keto diet and tic disorders for a couple years now. I have chronic motor tic syndrome that stemmed from prescribed adderall use in college. Now that ive been keto for a couple years, the relationship is undeniable. I also cut out red40 and most other dyes, sugar, any simple carbs, and some dairy. The results are amazing and my tics are at bay for most of the day. If i have a cheat day,y tics start up immediately and can last for a couple days during my carb hangover.
  21. 1 point
    maryangela

    Extreme behavior

    Wombat140– I am new to this forum, but have read a few of your posts. Your suffering reminds me of my son’s suffering. My son is rarely open to talking about his compulsions, but after dealing with his OCD for years, I’ve determined that all of his rages were due to his OCD being “blown”. Telling him to quiet down only makes the situation worse. The consequence does not matter, even if it involves a neighbor calling the police. Part of my son’s OCD was that he would need me or my husband to do something, but his OCD would not allow him to tell us what it was. For example, when triggered, he would need to change his clothes, then leave our apartment building. I would need to hold the door open in a certain way, but he couldn’t tell me how. He would change his clothes and go in and out of the building hundreds of times a day. One night he repeated this compulsion continously from 7 pm until 7am. He would change his clothes and I would walk around the block with him. It didn’t matter that it was in the middle of winter. I truly didn’t think we would live through this. My son will tell me that he is not being manipulative. The way I see it is that his OCD is manipulating him, which sometimes involves needing others to behave a certain way. He is not choosing to have these thoughts. My son is 80-90% better, since IVIG treatments, which started this past November. I hope you find relief soon.
  22. 1 point
    I have found it profoundly enlightening to read about some of the obsessions and what parents thought were associated to them. I know some of these things are pretty personal, but finding patterns and possible solutions can be very helpful. So, my DD is 10. She was diagnosed with Sensory Processing Disorder when she was about 3. My daughter was adopted at birth from my niece. We believe she was exposed to several drugs during pregnancy, and the father was a heavy user. She is "normal" from all first impressions, but she was obsessive about intense events. Like she might get hit by another child and she would not let it go for months. Then it was things like "a child threw up on the rug" and she would never sit on the rug again. But basically, it was very manageable and I that concerned. We had therapists for her for anything we thought she needed. She did seem to get sick easily. And she got strep, and pneumonia, even the H1N1 (we think all did) she started getting a little worst. She also have a couple of stays in the hospital for UTI's and blockages. She was diagnosed with gastro-paresis was one low doses of amoxicillin for motility from a very young age. Eventually that stopped working. So we went to an antihistamine called cyproheptadine. She is still on it. She has been on antibiotics several times, for ear infections, pneumonia, etc. She had blood work a couple of times and developed a phobia of needles. I had major heart surgery she was about 5 and that might have affected her. With the last time we needed blood work, she had a major panic attack, hyperventilating, etc. Mostly, her major obsession was with getting a fever. She needed me to check her forehead at least 2-4 times an hour, all day, every day. Then it was fear that she would throw up. Every 15 minutes she would say she was going to throw up. She got sick at Applebees about 3 years ago and everyday something reminded her that event. She didn't want to go out to eat because it reminded to her of that. Needless to say, we never went back to Applebees. Going from appointment to another would trigger major anxiety, but once there, she was fine. I started her on a powder probiotic, 5 billion, called Culturelle, about 3 weeks ago. She started having better days, but also somethings got worst. She seemed to get more fearful of others and their germs, but less about her forehead. But, she started playing for friends again. I started her on Renewed Life 30 billion, and her anxiety seemed to almost go away. But her ability to process her frustration also disappeared. One night she physically violent with us, the next day she attacked another student (her niece) in school for not getting out a seat she wanted. My Pro-Kids (Pro- 15) got here the next day and I stopped the Renewed Life and gave her the new Pro-Kids. Everything seemed to just settle and calm. She had a wonderful day. She went to her gymnastic lesson without complaint, she played with her niece, (got annoyed but worked through it) and went to the store with us without complaining. She kept saying how good she felt, her stomach didn't hurt. I began to question about things like, "did she feel spoiled" (a common one), did she feel anxious, (very common), was anything reminding her of Applebees, (very common) and she answered "no" to all it. She checked her forehead once today. Even though I'm pretty excited, I know this stuff is never really over. But, the idea that there is hope is strong with me.
  23. 1 point
    Annieo

    Paleo vs. Ketogenic

    I started eating a paleo diet about five years ago. It is a commitment in that you can't rely on easy, processed foods. Last summer I started eating a ketogenic diet. Both are do-able. The benefit for me is that aches and pains I've had my entire life are gone. The sinus headaches I suffered from almost daily are gone. In other words, the inflammation I experienced for years is gone. I have not tried the diet with my PANDAS child, but because of the way I eat, she eats far more healthfully than most of her peers. Her PANDAS symptoms are currently mild, although I honestly have no idea why. It's probably easier to try a paleo diet at first, and then if you want you can move to ketogenic.
  24. 1 point
    lordchallen

    Extreme behavior

    Maryangela I had my daughter on the "Renewed Life" (I think) and I noticed a couple of interesting things. Like her anxiety seemed to almost disappeared (compared her usual) and I was really excited. I was calling it her "rage" but I could tell it was her inability to cope with frustration. Like I told her "put it away" and she got mad. Then her older sister came and lectured her (I had left) and she got even more mad. All of this followed the school nurse grilling and interrogating her in the hallway. She couldn't process the frustration. She has had a "sensory processing disorder" diagnosis since she was 2. We are constantly trying to help her process things. This might be talking, tossing things, squeezing things, pro-prescriptive exercises, reflexology, etc. She is a good kid. She is very loving, kind, thoughtful, blah, blah, blah. But there times when she gets really mean, but then she feels really bad afterwards. But this last week, I totally see where a stomach imbalance can cause inappropriate behavior. MomWithOCDSon, Thank you so much for all of your insight. I have tried a couple of different probiotics. I am using the Pro-Kids (Pro-15) and she seems like a million bucks. They seemed to work almost instantly. She said she loves her probiotics, she hasn't had stomachache in 2 days. She is good. She is a little moody, but after everything that has happened I find it very acceptable. But not crazy. If she gets upsets with a friends, she just walks away and does something else. I am very excited, I just hope things continue in this trend. Thanks for everything and I will be around for more insight.
  25. 1 point
    maryangela

    Extreme behavior

    I found the book, “The Explosive Child” extremely helpful. I would recommend that both you and your wife read it. It discusses collaborative problem solving, but also that sometimes “giving in” to the child is the best option at the moment. It is not worth the child or someone else getting hurt. Unrelated to the book, my son has an OCD issue about being told “no”. He explains that is has nothing to do with getting his way. I think when he asks for something and he’s told “no”, it makes him feel “bad” or “greedy”. I need to be careful how I word my response. For example if he asks for ice cream before bed, instead of saying, “You’ve had enough ice cream today and it’s too close to bedtime”, I would say, “You may have ice cream after lunch tomorrow”. It took me years to figure out that most of his rages were due to someone interfering with a compulsion.
  26. 1 point
    bobh

    Can you help me solve this problem?

    I don't see a link to the page, but highly doubt that there is a valid conclusion that treatment for a year provides assurance of no relapse. Relapses are very common, and there have been trials of abx that document relapses or flares, even after a year of prophylactic doses. I hope this comment doesn't depress you further, but if so there is still hope. Our child improved dramatically with puberty - though not all do. I have found that the job becomes chasing all the triggers (including non-strep), as we don't seem to have a cure for the immune dysfunction, except possibly puberty.
  27. 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.
  28. 1 point
    lnn

    Need Help

    Mountainmom, My son had Lyme/Pandas and a month-long steroid taper helped him immensely twice, and did nothing once, over the 5 years he battled his illness. Our LLMD isn't a huge fan of prednisone but does recognize it has it's place for Pandas kids. Like your son, my daughter was in her darkest days yet had no definitive infections. She did have Marcons - you may want to ask about that. I may never know what exactly she was fighting, but I do know that a combo of bactrim and zith and prednisone saved her. Low dose naltrexone was also helpful. She has struggled immensely from mold issues - mold in her elementary school and now her Jr High. Prednisone isn't recommended for mold situations either, but desperate times called for desperate measures. She recently started Zoloft and although I've tried everything I could to avoid it, she does get relief and is glad she's on it. Inositol, Ashwagandha, Bacopa and looking into how your genetics affects methylation are also options for reducing anxiety. Cognitive behavior therapy wasn't hugely helpful for my daughter, but now that she's a little older, she's having great success with EMDR. So something to keep in mind as your son gets older, if he continues to struggle with anxiety. I know it feels like this will never end - and it is a grueling journey. But my son "grew up with" MomWithOCDSon's son - and he's now the healthy, obnoxious teenager I always hoped for, while her son is enjoying college. My daughter's journey has been harder and more complicated, but she too is making progress. So don't lose hope. Our kids do get better. But first they need to eat
  29. 1 point
    rhyanen

    Delusions

    When my 17yo ds is in a flare, his predominant symptom is psychosis. He will have minor auditory hallucinations as well which seem more sensory related. He will become paranoid and fear that someone is going to break into the home and kill him....whether that be the government, someone he knows or even my husband. He'll also think the killer is sending secret messages to him through media online or see certain symbols. I'll spend nights with him calming him down. It's a nightmare to say the least. I'd take the tics and OCD again like in the past over this. He also has Lyme so it's ard to tell if it's coming from the PANS or the Lyme.
  30. 1 point
    jenann

    Tonight's Chicago Med episode

    A firestorm of comments have gone up on the show's Facebook page. Please join them. https://www.facebook.com/ChicagoMed/ And here is a link to complain directly to NBC. https://www.nbc.com/contact-us
  31. 1 point
    The medical community has a hard time believing Molecular Mimicry. However, when you have a child that is not able to stand, walk, has all over body pain, nonstop headache, scalp pain, hoarse voice, vocal tics and a doctor from MAYO suspects postinfectious encephalitis then it's time to figure out what the illness really is. The Cunningham Panel can determine if the antibodies are present but only needs to be done when a child is in a flare in (my personal opinion). My son was diagnosed with Postural Orthostatic Tachycardia Syndrome (POTS) in October 2011. POTS can be caused by a virus. He had mycoplasma walking pneumonia in January 2011. Two years later testing revealed high Igg levels of mycoplasma, HHV6, Parvovirus, and a 500 strep DNASE level. My son suffered with his symptoms for several years and they did not appear overnight. The testing (Cunningham Panel) is available to prove that the antibodies do attach themselves to neural receptors. Thank goodness we have a few doctors that recognize what this illness is but it needs to be called neural receptors autoimmune encephalitis.
  32. 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!
  33. 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.
  34. 1 point
    MomWithOCDSon

    New member and mystery illness

    Fiddlegrl -- Welcome to the forum, though I'm sorry for all you've been through and the issues you're still fighting. I will say that I've been with this forum for many years now...first during my DS's illness and healing, and then somewhat less frequently for the last few years, checking in to follow up on old friends and any new research, and to chime in when something resonates with my experience. Pretty much ALL of the symptoms you've described, unfortunately, have been discussed here as part of the PANs/PANDAs continuum. It stinks. I don't have any practical experience with respect to Lyme and its co-infections; my DS's syndrome was clearly strep-related, though seasonal allergies exacerbated inflammation and the immune response for a number of years, once the PANDAs had kicked into high gear. Like you, though, we believe his behavioral issues were tied to atypical strep infections potentially as young as 3 years of age, though certainly by the age of 6 when he was officially given an OCD diagnosis. But he never tested positive (via swab and culture) for strep at the time, and no local doctors would give us the time of day regarding PANDAs then, either, so he went without any real treatment until he hit 12. That's when the PANDAs brought him to an absolutely non-functional state, the research coming out of NIMH, Columbia and Dr. Cunningham had progressed, and we were finally able to talk someone into an antibiotic trial. It was a long road, but the rest, as they say, is now thankfully pretty much history. As a result of our experience, though, I do think it likely that PANDAS/PANs sufferers who are at a more advanced age before receiving immune and/or anti-inflammatory therapies may have a harder road with respect to healing and "bouncing back;" not sure if that's because the brain "wiring" has matured more in the interim, or if the chronic inflammatory and auto-immune responses in the body are somehow more entrenched and therefore harder to reverse. In the end, it took my DS about 5 years in total to return to pretty much full functionality, and that was with auto-immune, therapeutic and psychiatric interventions all thrown into the mix. He continues to contend with some OCD and situational anxiety now and again, and I'm not convinced that this will ever disappear completely. But those issues remain at manageable levels (knock on wood), and he's happy and healthy and constructive and functional. Pretty much all we could ask for, after what he went through. I'm not sure how to advise you on any possible next steps, really, except to suggest that perhaps exploring some additional genetic markers and methylation issues might help you for the long term? You mentioned genetic testing for porphyria, but did you get a full work-up? A search here on the forum for "methylation" and "mutations" will lead you to multiple discussions regarding the methylation cycle and how genetic testing has helped point some families to a regimen of supplements and/or medications that proved to be more effective for them in light of various mutations and genetic predispositions. Perhaps that's worth a try? Finding a well-versed LLMD and/or integrative physician who could be your partner in working through these issues would be a bonus. Your post was very well-written, so I'm picturing an intelligent, capable and fairly "together" young woman, so I sincerely hope you're finding moments of joy and contentment in your everyday life, despite this tremendous burden. All the best to you!
  35. 1 point
    Sheila

    will these tics ever go away?

    Hi mlee, and welcome to the forums. I'm sorry that your son has been having some tics. Seeking help from a good naturopathic doctor is a great step to take. I hope you will let us know what foods come up as problematic. That should give you some good direction. You can also ask this person for suggestions on nutrient supplements. Charting is also a terrific step, though I know it can seem overwhelming, as you say. It will get easier with time. Keep it up--but also, only take on as much as you can without stressing yourself too much. If your son has a problem with gluten-- and not everyone with tics does -- it can take some time for improvement to be seen. I would give it a couple of weeks, and even then do not expect a dramatic change immediately as it can be a gradual change, and there may be other issues going on as well. Our organization has a new book out on tracking down triggers for tics. You might find it useful. Also, I think it would encourage you, because you asked if people are able to get the tics under control, and yes, many do and some of their accounts are in this book. But it can take a comprehensive effort, not just one or two things that usually bring about all the change. Have you already had a chance to make other changes in the diet like avoiding artificial colors, flavors and preservatives in food and drink? What we have found is that a three-pronged approach can often help: 1) dietary change, 2) avoiding allergens (is your child or immediate family allergic?) and 3) avoiding toxic products typically used in the home like bleach, scented products, pesticides. In addition to the above, you want to be sure there is not an underlying infection. Please get back to us and let us know a little more and also what the naturopath suggests about the food testing. And you should definitely have hope! You have already taken some very positive steps.
  36. 1 point
    bobh

    Tonsillectomy and Adenoidectomy?

    Ok, here is a spreadsheet attached that includes a brief description of the tonsillectomy experience, and then a link (all but 3 to a thread here at ACN Latitudes) if you want to read more. (The hardest part of this was actually weeding out duplicate responses in different threads). tonsillectomy_results.xls
  37. 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
  38. 1 point
    We also had very severe separation anxiety as the first symptom. Then we got many others (physical as well as behavioral/psychological). During the first 2-3 months, while DS (age 10) was getting worse and worse we did 2x weekly CBT with lots of "homework" (exposures etc). It did absolutely nothing. In fact, I think the CBT had a very negative effect: permanently imprinting truly awful memories of his school in his brain (thankfully he is now back in school but there was no way he was going to go back to the school where this started; to this day, he won't set foot on that campus). I wish I had taken the energy we were putting into CBT (and then going to the psychiatrist for zoloft, also totally ineffective) and put it into medical treatment (abx, naproxen, steriods etc). Our son would never have gotten as sick as he did had we known sooner (like practically every PANDAS kid). It is very hard to know what to do, but if the antibiotics are not sufficient in bringing back your child (and unfortunately, that appears to be the case quite often) , then I would start pushing for a 5 day steriod burst. If there is a glimmer of hope with that burst, then you know it is not separation anxiety, but brain inflammation and you can pursue more medical treatment options more rapidly. As others above have said, CBT is a very useful tool. Just not for someone in a full flare of PANDAS/PANS. I think CBT can be very helpful after a child has started recovery and parents are trying to nudge them along to be able to do more and more. When we got to that stage, I had a thought along the lines of "oh, so this is what we should have been seeing with all that CBT." And unfortunately it seems CBT is a tool many parents continue to have to use when recovering from future additional flares along the way... Best of luck.
  39. 1 point
    lysia

    Do symptoms change after puberty?

    I am an adult female. I was never diagnosed with any mental illness as a child, as my parents addressed any psychological issues as solely behavioral problems to be disciplined. That being said, I suffered from very severe OCD symptoms that (I suspect) **might have been a result of PANDAS. [As this was never diagnosed nor treated, it is purely personal seculation based on the symptomology and relative timeline of exposure to streptococcus- I also share other speculations as to possible causes for the disorder, though mostly suspect the former.] I can say that for myself; the OCD began to dissipate very significantly after puberty and continued to do so over the years. I have no significant nor any life debilitating symptoms remaining of OCD whatsoever. The most debilitating and severe period of OCD that I had was between the ages of about (I think) 7-12. However, the habitual thought patterns that I had developed in my brain during that time (mind you with no counseling/medication or understanding of it as a disorder whatsoever) did take a significant amount of years to fully recover; therein many behaviors still remained. I say this because I do believe that it is highly possible that the neurophysiological OCD had in fact been mostly if not wholly eradicated during the pubescent period in which I would had been experiencing many hormonal and chemical changes in the brain possibly countering or overwhelming some others. (Again- this is much personal speculation.) Nonetheless, because OCD is what it is, I find it impossible to consider these behaviors would disappear at the same time. Gradually they did go away. I imagine then on came bigger problems of being a teenager and every little bit by bit the tics and compulsions and obsessions did dissipate. I was VERY secretive of rituals (tapping/counting/hoarding/maaany others) and did them in a way not to be seen. Because of this and that whatever my parents might had known was never pronounced to me as a "mental disorder", I credit my ignorance to having an actual illness in a way to having had allowed me to recover; as there was no stigma or added obsession (i was highly obsessed with everything) that I was handicapped with a psychological ailment. In a way, the denial around me helped. This is NOT to diminish that as a whole, however I suffered far more severely because of it. But it is worth noting i think that sometimes less attention may help with recovery. Overall of course, a child needs their mother so much, and for one with ocd- they really need their mom. I love my parents who did just as they felt best, but during that time (that to this day I remember SO well as being so truly horrifying for me), I didn't have that. I was so extremely confused, shameful, scared, and exhausted. And so incredibly isolated. I am so grateful pediatric illnessness like these are finally recognized and kids now can have amazing mothers like you who are on their side of the struggle with them rather than at the other end of it. No child should have to feel so shamed, scared, and alone. Illness, treatments, recoveries and even regressions are just as any other experiences and trials of life. They are part of each individuals journey into becoming the person they are meant to be. And children are (be them healthy/disabled/'normal'..whatever) absolutely beautiful and perfect every step of the way. This is what I wish my mother would had said to me. So i could have understood that I'm not my illness, but my strength to battle this is part of what makes me so incredible and builds my character into the fantastic person I am to become. (Of course- this and also 'lets see a psychiatrist and get treatment'), but all the same Sorry about the tangent! I came about writing this commenr ( now... memoir) in searching this subject in Google just now out of random curiosity while reflecting upon my past. When I saw your q, I felt I just had to respond with hope because my google search q was: "my pandas ocd gone after puberty". When I read this, I was so inspired by you and what you are doing for your child. Asking these questions, treating her, and being in the fight along side with her. I joined just so I could write this to you to thank you for what you are doing for her and to send the hope to u both that it absolutely goes away. I can only imagine how exhausting and challenging it could be for a parent. But can also know first hand how horrible it is to have the illness, and to go it alone as a kid is beyond awful. So that's it, really. BLESS you mom for taking care of your girl and it absolutely does get better, as I feel that indeed post pubescence changed everything. So yes- hope is there and she WILL recover. I had a fantastic time by high school being ocd free (mind you tendencies there but I feel this is a bit of personal brain wiring and takes lots of time and work . It was NOT like it was before puberty). Keep being the AMAZING kick mom you are. I'm so SO happy she has you. Just needed to respond. [[**As a side note: in respect to the other comment made by a parent in which i felt some ocd kids might be getting stigmatized by the illness and certain behaviors are being either dismissed or over addressed as psych symptoms when in fact they are either one of 2 things: an unrelated call for help or personal struggle environmentally that isn't to do with ocd, or otherwise just a very healthy response to stresses of puberty. I wanted to throw out the fact that nearly every pubescent child/young adult/teen are often incomprehensibly 'nuts by nature' too! Please consider it's a crazy time for them (thier brains, bodies, self identy, sense of life..) and the healthiest girl during puberty can be a total weirdo obsessive anxious nightmare of a kid too I wouldnt had wanted my parents to say to me it was the 'ocd' every time I acted out (either by way of empathizing/diminishing/ reprimanding or whatever) and I could be horrid at times. I fear it would had kept the obsession for me longer and I would had never believed I would be rid of it. . Maybe i would had even used it as an excuse to get away with bad behavior which would had also drawn self identity to ocd and inhibited recovery . A BIG part of breaking this very strong mental lock is to forget it whenever possible. And it is VERY hard to do, but a beautiful thing when it happens. And each instance builds into healing. Sometimes it is rare and fleeting. Sometimes it is overwhelmed by something else negative (like even some nutty teen drama being created). I would just hate a reminder if it wasn't on my brain already. So i say, if they are being teen brats and it is not 100% textbook symptomatic of OCD, then dont call them out on having a psychological illness, call them out for being brats! (Just my opinion)]]. Good luck to you and your amazing kid. You're really a hero to me. Truly. Much love.
  40. 1 point
    ALSO NEED SO. CAL DOCTOR: We are brand new to the PANS or PANDAS idea and are looking for a PANS or PANDAS dr. in So. Cal. My daughter had acute onset symptoms of anxiety, OCD and ODD (which we didn't immediately identify) two years ago at age 14. She went into screaming rages, insisted on sleeping with us in our room, didn't want to ever be alone, and had extreme behaviors incl. jumping out of a moving car. We thought it was extreme teen rebellious behavior. We started w/ CBT and In the chance that something neurological was going on, and that it was possibly food related, we instituted the Feingold diet which removes all artificial colors, artificial flavors, and artificial preservatives (primarily BHT, TBHQ, and BHA). It also decreases the amount of salicylates taken in from whole foods. We also found that she reacted strongly food high in oxalates. The CBT and dietary changes have helped esp. w/ the ODD but she's still struggling w/ focus and OCD behaviors. We really need to get to the bottom of this if possible. It's crippled her high school path completely. We're looking into Dr. K in Irvine, but I'd like to know if there are any others. PM is fine. Thank you for any suggestions.
  41. 1 point
    lnn

    homeschooling/schoolwork and pandas

    Welcome to the forum and "welcome" to Pandas/Pans. I've unfortunately been at this for many years, first with my now recovered son and now with my daughter. I home schooled my daughter last year because her health was too precarious. Because it was only for one year and we always had the intention of returning to public school when she was able (for social reasons), our approach was probably different from yours. But I'll share what worked in case it helps. I think the biggest thing that was helpful was mindset. Like your daughter, mine went from being very capable to being very handicapped in what she could handle in terms of workload and abilities. There's a medical reason for this - inflammation in the brain creates what's called a cytokine storm. There are many inflammatory cytokines that become elevated, but one - CaM Kinase II - is essential for learning and memory - from Wikipedia: Ca2+ /calmodulin-dependent protein kinase II (CaM kinase II or CaMKII) is a serine/threonine-specific protein kinase that is regulated by the Ca2+ /calmodulin complex. CaMKII is involved in many signaling cascades and is thought to be an important mediator of learning and memory.[1] Misregulation of CaMKII is linked to Alzheimer’s disease, Angelman syndrome, and heart arrhythmia.[6 https://en.wikipedia.org/wiki/Ca2%2B/calmodulin-dependent_protein_kinase_II We had bad days and worse days. Some days, she was able to learn in a fairly typical manner and other days, it was like teaching someone who had suffered a brain injury like a stroke or car accident. So the most important thing I did each day was to feel out where she was at, what she was capable of that day (and I also had to realize that every day might put us at a different starting place, and sometimes she'd have different capabilities throughout the day). Re-setting my expectations on the fly was essential. Otherwise, I'd expect too much, she'd stress over disappointing me and over her own sense of loss. Much like working with someone who's in rehab for a stroke - how frustrating it is to not be able to do things you've easily done for your whole life. So forget about what she used to be able to do. Forget about what her brother can do. These are, for now, false points of reference. Start each lesson by assessing where she is at that moment and work with that. Do not show your frustration or expect more than she can give. That just blames her for something that's not in her control. You wouldn't do that to someone in rehab. You can push the way a cheerleader might - "hey, do you think you can do one more problem? No? Ok, take a break, you did a good job." But don't push with the thought that you can somehow push her back into being her old self (spoken from experience). My daughter (12) reads at a 12th grade level. But there were many times she couldn't focus on the words on the page. But she could listen. So I'd read her social studies book to her while she doodled (drawing helped her stay focused, ironically, because it's something that relaxes her and it distracted her from her anxiety). Then she'd answer questions about what I'd just read to her. Sometimes she could write the answers herself, sometimes I could see from her horrible handwriting that I'd have to scribe what she verbally told me. We just had to be flexible. We did a lot of verbal discussions. We broke lessons up into very small chunks - sometimes as little as 5 minutes. Then we'd re-group 15 minutes later, or an hour later, or a day later. I had to let go of my scheduling, my goals, and just listen to her body and support her. The old her was temporarily gone. I had to teach the person who showed up that day and just help that person do her best for that day. Not easy for a Type A mom. But it's what she needed. She is back in school this year, on a modified school day, with many absences (but for social reasons, she is adamant about being back in public). We often find ourselves having to do do school work at home to make up for missed days, and our approach is to do things in very small chunks. When she's feeling well, she takes pride in doing things independently. When she's in a bad place, I sit with her and coach her every step of the way. It's very much a teaching-as-if-you're-a-rehab-therapist approach. The amazing thing is that once the body heals, the old child comes back. You don't need to worry about her getting lazy or developing bad habits. No one wants to get back to her old self more than she does. When she heals, she will return to the independent, curious child she's been.
  42. 1 point
    If your child has Myamotoi Borrelia it would NOT have come up positive on standard Lyme test. It has different proteins and not testable at this time. Borrelia Spirochetes can be sexually transmitted and also passed from mother to child in-utero. We have 3 children with gestational Lyme et al PANS/PANDAS/Autism. I PM'd you a list of Dr.'s. One is located in Santa Barbara for you plus some really good Dr.'s/NP's in Bay Area. 2 of the NPs listed have children with PANS/PANDAS. Look in upper right hand corner for PM message.
  43. 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!
  44. 1 point
    Hi Everyone. I just had to sign up to this forum to let you all know that Clerodendrum inerme has dramatically helped my sons tics .It is truly a miracle plant! We live in South Africa and I sent my husband to India in 2012 to source the plant which now grows as a bush in our yard. My sons tics began at age 3 (started with eye blinking, shoulder shrugging, got worse and worse...etc.) After years of research and tears,our prayers to Allah were answered when I came across the study on Clerodendrum Inerme for tics. My son is 10 years old now. And a 'normal' little boy in every way.We dehydrate the leaves, grind them fine and put the powder into capsules . We used to liquidize the leaves with water and strain, but he could not handle the bitterness. Right from the first dose there was a major improvement. In the beginning I would give him the juice twice a week, then once a week , then once a month. He can now tolerate all kinds of foods that were once forbidden. He will have 2-3 capsules every 2-3 months or so when I notice he is stressed about something or has gone overboard on junk food. A day later and he is fine again. I promised that if the plant worked I would share this amazing information and I pray for all the children and parents that you derive benefit from it.
  45. 1 point
    This is a tough one. Separation anxiety/general anxiety, in our case, was the worst symptom for our daughter. I remember like it was yesterday not being able to go to the bathroom without her following. Her gran couldn't even get to take her out without mum or dad going. Luckily, it did eventually improve with 6 months of prophylaxis abx but was the last symptom to improve. Even now DD doesn't have the confidence of her peers. They are all having sleepovers etc., but DD isn't anywhere near this. Take small steps and try not to show how frustrated you are (hard as this is). It really does improve with time. You won't be at this crisis point for long. Improvement for us happened very gradually. One day at a birthday party I thought how great it was DD went off to dance on her own without holding my hand! Then she sat at the dinner table with her friends and didn't notice I wasn't stood behind her. Went to the toilet on her own without a second thought..... DD overall is 95% better since major episode 2 years ago She still takes prophylaxis for now and she will have minor relapses with viruses etc. But, despite separation anxiety being the one symptom we see decline first when she gets ill, it is nowhere near as debilitating. She just gets more nervous and on high alert for a week or two. No - she's not like her friends quite yet. But she did stay at a friend's for tea for a whole 2 hours last week without me - and didn't want to go home when I turned up to collect her! She was so proud of herself and because it went well for her (i.e. nothing 'bad' happened and mum did come back), she is now primed to do it again soon. She is actually looking forward to the next time. She will just be much older when she does all the independent things like sleepovers at friends. Word of warning though, I have been seeing a therapist to help me cope with PANDAS PTSD and I have discovered how much of an influence I can actually be on my daughter's anxiety. Without realising, I have been just as nervous as her (or worse?) at the thought of her being independent ('oh my god, she couldn't possibly do that.... worry, worry, worry.....people don't understand, that will set her right back'....etc. etc. etc.......) All those thoughts I have because I too am scarred from years of rollercoaster behaviour and trying to prevent disasters. We, as mums, have a duty to protect. This is our second nature and we do so many things we are not aware of. You are now programmed to condition the environment to your DD's needs. It doesn't matter she is getting so much better, fresh in your mind are those awful reminders of worse times. When will it happen again? Be mindful of the fact that we influence our children so much: I didn't know I was holding DD back until a stranger told me. I hope things improve for your family real soon. Hang on in there............
  46. 1 point
    MomWithOCDSon

    Looking for success stories

    Welcome to the forum, but sorry your family has been forced to deal with PANDAS/PANs. As you do some reading here, you'll find that our stories, including treatment protocols, can vary widely. What does seem to be a thru-line to some extent, however, are commonalities among behaviors that we see in our kids when they're sick. There's some commonality in response to various medications and supplements, too, but not always. Time frames vary dramatically, also; I have my suspicions that this variance has to do with age at diagnosis, length of time the child was suffering due to PANDAS/PANs but went incorrectly diagnosed prior to diagnosis and treatment, and similar temporal differences. My DS was diagnosed with "regular OCD" at age 6 and went through a second "flare" or exacerbation at about 7.5 years. We inquired about PANDAS with ped, therapist, and ultimately a psych as well but were told it wasn't "real," and since our DS was classically asymptomatic for strep, we couldn't demonstrate a link, either. So we treated with therapy and finally an SSRI (Lexapro) until he turned 12. At 12, he completely flipped out. Went from being fully functional, funny, social, academically gifted, to a basket case. Couldn't read, sleep, play, eat. Psych kept switching up psych meds . . . different doses, different formulas. Nothing worked, and he just got worse. "Saving Sammy" and subsequent email conversations with its author, Beth Maloney, turned our attention back to PANDAS/PANS, particularly since Sammy was classically asymptomatic also. Ultimately, we were able to prove some atypical immune response through blood tests, and our ped was, gratefully, willing to give us an abx trial. Based on Sammy's protocol and our DS's similarity to Sammy in terms of age, behavior set, etc., we began with Augmentin XR, 1,000 mg., twice daily. When I found this forum and connected with a number of other families and great minds who were deep into the latest research, helping their own families and others, too, we began to explore other supplements that could assist DS with respect to immune balance and behavior; we also found a PANDAS-literate psych and reduced his SSRI dose and changed the med, as well, to Zoloft. We looked into IVIG but did not pursue it for a number of reasons, not the least of which was DS was so positively responsive to abx, we didn't entirely see the need for another, more expensive intervention. DS was on the XR for nearly 2 years; we slowly weaned him off the last 4 months or so. He also continued on Zoloft and certain supplements we found seemed to help him on an ongoing basis: NAC, B6, zinc, quercitin, omegas and magnesium. We also kept him on probiotics (sach b. and a mixed flora) during the abx and for quite some time afterward. ERP therapy was also his constant companion, twice each week for the first year or so following his PANDAS dx, and then edging off slowly as we saw him gaining more traction over the OCD, and as we became more and more literate as parents in terms of helping him beat back the OCD at home, rather than accommodating it. He's now 17 and I consider him a success story. He can now maintain his health -- mental and physical -- even when exposed to strep. He's been off abx for nearly 3 years, though he continues on a low-dose SSRI. I've found a compounding vitamin supplier and have been able to order a custom blend multivitamin for him that contains the things we know help, and leaves out the components we've seen can have negative impacts for him. He is back to his functional self -- funny, fun, bright, in AP and honors classes in his senior year in high school, has friends, etc. He still contends with some OCD; whether or not that's because he was dealing with that for 6 years before we were successful in getting PANDAS intervention I can't say for sure, but that's what I suspect. His brain was being wired those 6 years, so undoing that will likely continue to take some time. I wish you all the best, and from our experience I will offer two key perspectives: 1) time is an important component in the healing process; and 2) don't ever give up!
  47. 1 point
    A new scale for parents to rate the severity of obsessive compulsive symptoms and 11 associated neuropsychiatric symptoms (i.e., anxiety, moodiness, sleep disturbance) is in the development phase and available for use. The current scale is based on the clinical experience of doctors Susan Swedo, Miroslav Kovacevic, Beth Latimer, and James Leckman, with the help of parents Diana Pohlman, Keith Moore, and others. Instructions to complete and score the scale are included throughout the document. ACN appreciates that Dr. James Leckman, Professor of Child Psychiatry, Psychiatry, Psychology and Pediatrics at Yale, has given us permission to share the scale here. We hope it will be helpful to parents. Click here to view and print the scale.
  48. 1 point
    dut

    vision zooming in/out

    Hi - my dd had something that may be similar... during an episode about a couple of years ago, when she went to bed she said that it looked as though I (lying on the bed with her) was miles away and she would look round the room and everything felt as though it was too far away. It would correct itself for a bit and then I and other things would be too far away again. It only happened at bedtime (which is a low point for her when things crop up that might not be evident at other times of the day). It went away after a couple of months. Both I and my sister get something which I believe to be similar but maybe not.... we get kinda proprioceptive changes of a sort. When we're tired sometimes, normally laying in bed at night, we feel as though one of our digits or sometimes a leg has grown to super enormous size. Not a bad but strange feeling, as though a thumb, say, has suddenly ballooned to 20 times it usual size. My dd's sight thingy felt as though it was along the same lines, a perception type issue rather than actual shifting in vision.... dunno... hope you work it out, good luck...
  49. 1 point
    amyjoy

    Holistic Treatments for PANDAS

    Well that's an interesting link. I sent this homeopathy practitioner an email to find out more about this particular case, maybe she's open to sharing more info. In terms of my son, we have tried almost every holistic avenue to cure his PANDAS, before and after we knew it was PANDAS. I work in an integrative practice, so my inclination is natural means but am willing to include the medical because to me, that is "holistic" - the inclusion of all of it. We have done herbs and supplements, enzymes, all kinds of gland and organ supports, acupuncture, chinese herbs, a number of kinds of body work and body-based therapies, ayurveda, detox, anti-inflammatories, prayer, shaman healers, chiropractic, psyche meds including natural ones, gut and liver supports of all kinds, energy healers, reflexology, cranial sacral, psychotherapy, emdr, nlp, biofeedback, juicing, a zillion different versions of diets and allergy elimination, rotation, wheat free, gluten free, chemical free, dairy free, whatever free. Gosh, we have gone broke doing all these things while having Kaiser insurance that covered zero, plus they did zero of the testing he ultimately needed except they were willing to do an ASO titer (which when it came back as 600 they just shook their heads and suggested 5 days of zithro). Nothing in and of itself eliminated the situation. At different times, different things did help. There are a couple of main things. THE FIRST was, a specific form of cranial work that DS has had, helped him tremendously from day 1 before we ever knew it was PANDAS. We had spent 1 1/2 years thinking this was a psych issue. Then our third therapist had the brilliance, after 2 appts, to say hey, this is an organic tic disorder not a psych issue, and she referred us to a chiro who specializes in neuro and cranial stuff, a lifesaver, literally. All we knew is that it transformed our child from an 11year old becoming less and less functional and barking and shaking and ticcing and up all night into a sleeping much more, no more verbal tics and definite coordination improvement almost immediately. Really it just took the edge off and helped us see more of DS's baseline without the added cranial structural stuff he had for whatever reason putting extra pressure on already inflamed brain tissue and cranial nerves. It was a Godsend and continues to help tremendously, although he's in such a different place now. It also was the first clue that what we were dealing with was inflammatory, as that is not a typical tourette's scenario. SECONDLY - testing. Thorough and complete and accurate testing. Doing a full GI workup and the right blood testing gave the kind of information that was targeted and showed us how to tackle it head on. We would never have known about the celiac if we hadn't gone out of Kaiser's system (their one TTG test showed negative but that's not a great test) or about the clostridia in his gut. Or the methylation problems. Or certainly about the PANDAS. But getting off of Gluten changed his entire existence from a puffy achy bloaty pastey waterlogged child to a pain-free (almost) unbloated less waterlogged almost normal looking child with a tad of color in his cheeks. and the stomach aches went away completely and stinky awful poops. It took alot of supplements to clean up his gut and then help rebuild his damaged intestine and intestinal lining, months, before we felt we could even start him on antibiotics (we found out about the PANDAS at the same time we found out about the celiac). THIRDLY - natural anti-inflammatories esp Avipaxin, which reduces inflammatory cytokines in brain, also some very cooling chinese herbs, and methylation/liver support and magnesium magnesium magnesium, and oils. AND FINALLY - IVIG. 2 months post IVIG, oh my gosh. The other night after a basketball game one mom came up to me and said that parents were remarking in the stands at my son's extraordinary progress and coordination improvement on the court in the past 2 months. They did not know what he has been dealing with. Life is better so so much better in my house. OH, one last thing we are now working on. A few weeks ago, my DS had this wierd stomach feeling and then it made it that he felt he couldn't take a deep breath or something, and it created a few weeks of anxiety as we ran our circuit of healers and no one could make this go away. It occurred to me that perhaps, if you or I had originally felt this symptom or set of symptoms, we probably would have noticed it and then not really stressed over it and more than likely it would have eventually gone away. But because my dear boy has grown up mostly ill his whole life, when he gets a symptom his entire little being focuses on it and worries over it, and maybe, makes it bigger, i don't know. So i decided that maybe a part of him had to remember his healthy self inside him, and help him to maybe re-wire some thing in there. I had this picture of like, a tuning fork inside him resonating out, hello, this is who you are despite all of your years of suffering and illness, and maybe remembering this would help him. So i brought him to a somatic therapist, who also does clinical hypnotherapy and calls himself a "psycho biologist" or maybe a bio psychologist? Anyway, after 2 sessions, all of this breathing stuff is gone and DS is learning some wonderful skills about dropping down into some healing space and bringing his power back together as a whole being. All of this said, he's still on antibiotics and a host of supplements and will be for however long it takes. And i'm still broke. But i think of the term "holistic" as being very inclusive, so that everything is open territory and that we can pull from all realms of healing, and that each child's path is unique. Anyway, sorry for the long post, but maybe something in here might help someone.
  50. 1 point
    Hi Claire, although we did food sensitivity testing when my son was young (4yo) and again after his TS diagnosis(10yo) and also specific food elimination when we were detoxing from candida(yeast), my son does NOT have any food allergies or sensitivities, other than to artificial ingredients. He showed only a slight reactivity to peanuts, but now seems to tolerate them just fine. He does however react big time to artificial sweeteners, colors, flavors, high fructose corn syrup, preservatives and MSG and so we totally avoid these.


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