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  1. Today
  2. 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.
  3. Paleo vs. Ketogenic

    Thanks, Annieo. Although, I’m interested for my PANDAS son, I’m hoping when we make the commitment, it will be as a family.
  4. 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.
  5. 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.
  6. Yesterday
  7. Extreme behavior

    Also, I believe my son has PTSD from all the years when his compulsions were treated as defiant behavior (even in therapeutic school and psychiatric units). I think that’s where he can’t handle being told “no”. As far as not being able to turn off the computer, if they have a so-called voice in their head telling them they need to do x,y & z before logging off, they may not be capable of doing it on command. I know it sounds like making excuses for the child, and it took me years to figure out. A good example would be my son playing on my phone in the waiting room of the behavioral therapist. The therapist would come to get him when she was ready. She would ask him to stop playing the game. His OCD was so severe at the time. He would have to go through many rituals before turning off the phone, which involved closing all the apps multiple times. The therapist would begin counting to five, which totally broke his concentration, so he couldn’t turn off the phone. Then he would be physically forced to the therapy room where he would be physically restrained. He would be out of his mind because he didn’t comply with his compulsions. I have so much guilt about bringing him there, and allowing them to do this to him. The good news is that he’s 80-90% better. Mostly from antibiotics and IVIG treatments. ....back to the book, “The Explosive Child”, the author says something along the lines of “Kids do well, if they can”. In other words, if they aren’t doing their homework or listening to you, they probably aren’t capable at that moment.
  8. Extreme behavior

    Maryangela, I've noticed some thing like this in my daughter. She saw a video on YouTube where a girl was actually acting extremely spoiled. She constantly tells that she feels like that. And so when things get rough she feels extremely guilty, even suicidal. That was my biggest fear last Thursday, she kept trying hurt herself. There is no reason for her to feel that way.
  9. time between strep and tics onset

    Thank you for the explanation.
  10. 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.
  11. I recently watched a Joe Rogan podcast where Chris Kresser spoke at length about the Paleo diet, and even described an adolescent patient that had what seemed like PANDAS symptoms, and how he was cured by following this diet. I also recently watched a new documentary called “The Magic Pill”, which claims the Ketogenic diet is a cure to many diseases. Has anyone tried either or both for their PANDAS/PANS child? I’m wondering which is most effective, and which is most practical to follow. My son has an aversion to what he perceives as junk food, so eliminating gluten is not a problem. He won’t eat pizza, bread, breaded foods, chips, pretzels, etc. He will eat ice cream and yogurt, so I’d have to find a replacement. I know both these diets are a huge commitment, but I am extremely interested.
  12. time between strep and tics onset

    Supermom -- What I mean is that, anecdotally anyway, it generally seems that the younger the kid when the reaction to strep (PANDAS) is caught and treated, the more responsive they tend to be to treatment, and therefore the better chance that, treated quickly and thoroughly, it won't become a "chronic case." And by chronic, I mean a case where the behaviors (tics, OCD, separation anxiety) get to a point where they won't relent, let alone dissipate entirely, and the kid can become reactive not just to that primary trigger (strep) but also to other microbes and/or allergens. Again, pretty much anecdotal evidence only at this juncture, but kids like mine for whom the condition isn't properly diagnosed or treated until they're older, and they've been through several rounds with it earlier in life that were either misdiagnosed or undiagnosed altogether because the illness presentations were not "classic" (i.e., no positive swab test), seem to have a harder time bouncing back, both medically and psychologically. My son was 12 before we got a PANDAS diagnosis and treatment, but he had been behaviorally symptomatic (OCD) since the age of 6, and, we suspect, likely dealing with strep issues well before that due to chronic ear infections since before he was 3. So, by the time he got real treatment, he'd dealt with OCD and separation anxiety and an inflamed immune system for years, and he had a hard slug out of it all. On the other hand, there have been families with kids here on the forum who were diagnosed and treated at 3, 4, 5 and 6 who seemingly have "recovered" fully and do not seem to deal with much, if any, residual affects. So my take-away from those comparisons is that catching it early and treating it early can only be a good thing!
  13. Extreme behavior

    Sachromyces boulardi (or "sach b," sold in pharmacies, though usually behind the counter, under the brand name "Florastor") is a "beneficial yeast" that is supposed to help crowd out and kill problematic, prolific yeasts, like candida. You can also get it in a less-expensive brand (Jarrow) at most Whole Foods or Vitamin Shoppe locations (or Vitamin Shoppe on line). There are also prescriptions for yeast overgrowth (rather common in women, anyway) like Nystatin or Diflucan, that you can get from your doctor. I know they can test for it, but I'm not sure what that testing consists of? For some reason, saliva comes to mind, but I'm not sure that's right. Anyway, if you search the forum here with a key word like "probiotics," you'll find lots of threads on the topic, including some posts about some flora working well for some, potentially contributing to some problematic behaviors in others. Just another component of this tricky, very personalized, condition and path to wellness. Follow your gut in terms of what you've changed in her interventions or diet and what you might attribute her shifts in behavior to, but I'd also suggest being open and flexible to the idea that there may not be any real "cause and effect," either, necessarily. With hormones and neurotransmitters and immune system all firing and changing as our kids grow, it could be some "perfect storm" of things that has no relationship to any change in supplements or other interventions you've instituted. It may all quiet down as quickly as it flared up, whether you change something or not. I know it's incredibly frustrating. Just listen to your instincts, pay attention, maybe keep a journal (if you aren't already) making brief notes about what her regimen is and what you see behaviorally, etc. A journal is great for the Big Picture, because sometimes we can get so mired down in the here and now, we can lose sight of how far our kids really have come from their Worst Day, or miss some over-arching trend that maybe started days or weeks ago when we decided to try adding XXX to the supplements, etc.
  14. Last week
  15. Extreme behavior

    What do you do for yeast? There was an incident at school today? Her anxiety seems to be less, but her rage is of the chat and quick to flare? I'm going to cut back the probiotics except for the pro-15 kids. Something is shifting, some good, some not good. She takes Advil three times a day. It helps, but not enough.
  16. time between strep and tics onset

    My DS 13 has been most impacted by OCD, but suffered from 6 tics from 2012-2016. Five of the 6 tics went away after 30 days on a high dose of Augmentin, and never returned. The 6th one went away in 2017 after a high dose IVIG, and never returned. He also did experience one additional tic temporarily in 2016 after the 30 days Augmentin. This was a facial grimace. This went away after treating him for a yeast infection. I’m recently discovering the huge impact of a yeast imbalance. I think PANDAS /PANS kids tend to have issues with yeast even before they are on antibiotics. I give my son Saccharomyces Boulardii, in addition to his regular probiotic. He also takes Candicid Forte.
  17. time between strep and tics onset

    Thank you for the response. What did you mean by, “ your son's young age is likely a good sign that his condition is not chronic.” sorry so new to all of this.
  18. time between strep and tics onset

    Because you've already had instances in which the tics were temporally associated with a strep infection, I would be alert because sometimes the behaviors can be "the canary in the coal mine." You may see them before, or even instead of, classic strep symptoms. There are anecdotal reports of kids who find themselves in a carrier state, without active infection but reactive behaviorally, as well as kids who react to being exposed to strep, even though they don't "catch" it. The temporal relationship between date of infection and behavior onset can also change with repeated episodes; also, if your son has developed PANDAS, it is possible that he's still strep-reactive, even though the swabs are not coming back positive. My DS never had a positive swab, but when we had his strep titers (antibodies) tested via blood test, his numbers were way out of range (high); that can be an indication that a true auto-immune dysfunction has been set off whereby the body continues to produce antibodies even when the invader has been "conquered," or the invader could have found its way into some "safe harbor" (the gut, the sinuses) and thus still be signaling the body to make the antibodies, even though the infection isn't classically "active" at the time. Sorry to say, but based on families' experiences reported here, it seems rare that a single, 10-day course of antibiotics is sufficient for kids who are predisposed to either strep or PANDAs, though your son's young age is likely a good sign that his condition is not chronic. If possible, I would see if I could get a couple of blood tests for strep titers run (ASO and anti-d-nase-b) to rule out any possibility that something classically asymptomatic isn't still lurking. All the best!
  19. It has been 2 months since my 5 year old son started having facial tics along with throat clearing. His facial tics started March 25th at 7pm. I was with him all day and then at 7pm he was watching his ipad and boom it started. the facial tics included: facial grimacing, eye blinking, eye widening, nose scrunching, a bunch in his face. A throat clearing tic surfaced a few days later. Those tics happened 95% of time when watching tv and or ipad. the other 5 % was when he seemed relaxed, in the car and reading a book. The facial tics lasted about 3.5 weeks after a bad stomach virus and he threw up 10 times, the facial tics for the most part went away. ( i occasionally see a eye dart or a eye brow widening, but very rare) He still has the throat clearing tic that happens mostly when playing or running around. Sometimes when he gets upset or excited he does a teeth grinding thing. I feel the teeth grinding thing he does purposefully only cause when i ask him why he is doing the teeth grinding thing he can stop it. Or he tells me his teeth are itchy. he tested positive for strep throat culture back in November, 4.5 months before the tics started. we think he got strep Nov 4th but didn't know until Nov 7th/8th when he threw up and had separation anxiety going to school. We took him to the doctor and he tested positive for strep. I feel horrible that he went 4 days we think with strep before we knew. the strep was cleared with a 10 day dose of Amoxicillin, then December 1st he developed a night time only cough for about 6 weeks, was put back on antibiotics this time Augmentin for 10 days even though he tested negative for strep but they think he might of had a ear infection because his ear looked a little infected the antibiotics did not work for the cough so back to the doctor and he was then put on Flonase and the cough stopped. we had to stop the Flonase as it made his nose bleed but once we started the zytrec the cough stopped completely. He is still on zytrec because his seasonal allergies are just horrible but he still throat clears when playing. My question is can you develop strep related tics 4 months after the strep test was positive. He has been swapped 2 extra times for strep and they came back negative. My pediatrician and neurologist both said if it was strep related tics and or pandas he would be acting different and that those tics usually start soon after the infection and not 4.5 months later. So for now he is diagnosed with transient. he is a very happy outgoing kid but sometimes gets angry if something doesn't go his way ( for example his brother taking his toys etc). he seems irritable in the morning as well ( not sure if that is due to zytrec) but i know that could be 5 year old behavior.
  20. For the adults with PANDAS /PANS....

    I would also add that my on was tested for lyme 3 times by different doctors, infectious disease, rheumatologist, internal med (but none PANDAS-literate because those people refused to help him) in SF and Boston and all came back negative for Western Blot. There was never further testing - we felt relieved as it was something we did not have to be concerned with. But when we found the Pandas specialist here after my son totally crashed, she ordered a plethora of tests through Igenix. That is when we learned about the bartonella and babesia. Don't waste your time with LabCorp and Quest. They really don't have the expertise. Igenix is cash pay and expensive - but you will get legitimate test results.
  21. For the adults with PANDAS /PANS....

    My son had to have emergency tonsillectomy during finals week of fall semester (regret immensely not following our instincts way Back in 2001 and insisting they be removed) and pulled out of his senior spring - missed commencement week and graduation this week. He sees his parallel life going on without him. We are seeing someone now, a PANDAS specialist. DS is being treated for lyme-related co-infections although he has been asymptomatic for traditional lyme symptoms. No one was talking about all the co-infections back in 2006. Now it seems liike most kids have something related to lyme in the mix. "Rowingmom" on this forum expressed the interesting alternative narrative that maybe it's the lyme that gets in and creates the perfect storm for PANDAS to take hold. That is how we interpreted her experience. Now everything is so inter-related we really don't know what is causing what - is it PANDAS, or lyme or die-off, the many (31) pills a day my strapping 22 year old is chained to, general depression and anxiety over his situation - who wouldn't be depressed and worried? The specialist who finally accepted our family and is 100% interested and invested in this, does not know. We are in the situation of hoping the drugs to kill bugs work and we get to IVIG and it works, before my son gives up on his life. You all know it's a struggle. When your kid is an adult and reads everything and analyzes it, the struggle to keep moving forward, keep positive, is really intensified. We were advised to stop his prophylactic abx in 2007. We could not get more abx. Today I would insist and keep my kids on abx until at least 25 - maybe all their life.
  22. Extreme behavior

    I'm so sorry, Lordchallen. That all sounds awful. But, unfortunately, these sorts of "rages" appear to be part and parcel of some kids' PANDAS behavior set. Usually brought on by severe and unrelenting frustration, knowing that their behavior isn't what it once was, isn't what it should be with respect to age-appropriateness, but to a large extent out of their control because their brains are so disordered currently, their executive functioning so challenged. As for why those behaviors seem to get worse or more extreme in the evening as compared to the morning? I had a psychologist give me a metaphor once that painted a pretty good picture. Your kid gets up in the morning and it's a new day; everything yesterday is behind her, and she has a chance to "do it right" today. So the morning is about as full of optimism as the day is going to get. And then she goes to school or goes about her day, and because she's around peers or non-parent adults, she's doing her best to keep it all together. So she sucks up her anxiety and distress for much of the day, trying to "be normal." And like a glass that's slowing filling up with all of that angst and frustration, she's got those reserves, under the surface. But by the end of the day, that glass is full, and at the next incident that's frustrating or anxiety-producing, it's overflowing because there's just nowhere to stuff it any longer. And she's in a "safe" space at home and with her family, so she's not forced to suck it up any longer like she is at school or around her friends or their families. And she probably couldn't by that time of day anyway, even if she tried, because the glass/her reservoir is full, tapped out. It's really hard because you don't want to excuse these rages as acceptable, but at the same time, you know there's an extent to which she can't control them. And she clearly doesn't want to have them, either. I would maybe try a few things. 1) Is there any chance she might have some excessive yeast growth going on due to antibiotic use? I know you're using probiotics, but sometimes that doesn't do the trick for all kids. Excessive yeast can make some kids more combative/ragey. 2) Maybe during a weekend morning or mid-day, you could have a "family meeting" and talk through some strategies with her, while she's calmer and she's in better command of her behavior and her emotions. Let her know you know she doesn't like those rages and is as distressed by them as you are, so let's figure out ways to de-escalate the situation, rather than fuel it. Maybe she can go into her room for a bit and listen to music or just sit by herself or with you quietly for a few minutes until she feels calmer? Maybe find a few things or activities that she finds pleasant and calming that could be brought in when she's overwhelmed or "topped out," if only for a few minutes at a time. 3) Have you tried using an anti-inflammatory in the evenings, like an Ibuprofen? We found that using this as a medicinal therapy after dinner seemed to help my DS to muscle through evening activities (homework) without getting quite so worked up or frustrated. I think it helped tamp down the inflammation enough so that he could think a little more clearly and not have quite such a quick trigger for frustration. WIshing you the best.
  23. Can you help me solve this problem?

    Thanks for this insight. I am guilty of wanting it to be over soon. My wife and I were broken hearted tonight watching our beautiful daughter turn into some sort of possessed demon. Only to have her later break into tears and sob about how she could not control how she felt and how she acted. Scared the bejesus out of us, that is for sure. I thought she was getting better for the last few days, but in the evenings the anxiety and anger is intense. The School counselor says the have been some of her best days. But she was physically trying to kill herself tonight. Then she is so distressed that she thinks we are disappointed in her in some way. One minutes you trying to keep her hurting herself or me and the next trying to comfort her.
  24. Extreme behavior

    I wanted to ask about extreme Behavior. I have been giving my daughter probiotics for the last few weeks. And I started giving her another one a few days ago. Her obsession with illness and sickness decreased a lot in the morning and noon time. But in the evening she would get very anxious. A couple of things happened today at school and she felt as if she had been humiliated by the school nurse. She came home and wanted someone to feel sorry for her. And we did empathize with her. But it didn't seem enough and she became irritable. There were a couple of other things that should have been minor that also seem to bother her. When I told her that I wanted her to put the computer away at 8:30 she became belligerent. Demanding to know why she should do that and why not 8:45was pretty clear that it would just simply be at 8:30, and I may have raised my voice a little bit. I walked away and let her finish her playtime. But she quit early and came in and became belligerent with my wife. She had apparently forgotten to tell us that she had more homework to do and so my wife told her to get started. I didn't over hear everything but my daughter threw the pencil at my wife's face. This upsets my wife and there were cross words said. Things became physical and my daughter slapped my wife's face. I held her so that she could not do it anymore and she pulled away and ran to her room. I could hear a lot of noise through the door we are beginning to hear metal clanking. She still would not open the door and I became concerned for her welfare. So I actually forced the door open. So my ten-year-old daughter had pulled out the fire escape ladder and was trying to put it out the window. I carried her back to the living room set her on the couch so she fought me for almost an hour. She kept kicking and hitting us and trying to run out the front door. Without getting into all the details, my wife got hurt and was actually bleeding. That is when I raise my voice into more of a loud angry tone. This seemed to settle her down a little bit and I was able to sit back and she sat and glared at us hatefully from the couch. After sitting on the couch, glaring at us, her eye actually rolling up into her head she seem to grow tired and covered up with a blanket. Then she got up and got a piece of paper. And then at some point she started crying. She was sobbing that she was sorry and that she couldn't help it. She said that she was fully aware of what she was a doing but could not control the things that she said or how she felt. And she sobbed controllably that she couldn't fix it and that we would never trust her again. And she cried hugging us and telling us how much she loved us and that she really never wanted to go away from us. Anyway, it was a pretty stressful night. I know the people go through these sort of things with pandas. I want to think that she is getting better, as during the day she is much much better. But at night her anxiety and anger seems more extreme. I almost feel as if something is wearing off, and her ability to process emotions is inhibited. It would be nice if anyone had experience with this sort of thing, if they could share it with me. Thank you.
  25. Can you help me solve this problem?

    I have to agree with bobh, though I'm sure that's not what you want to hear. I don't think that PANDAS has been recognized long enough or consistently enough, or treated properly long enough or consistently enough, to have any true, longitudinal statistics with respect to "100% cure" or relapse probability. On top of which, there isn't even a well-defined or implemented treatment protocol that works for all cases, all of the time. There are practitioners who will tell you that antibiotics do not work long-term; that IVIG is the only way to "cure" the condition; then there are those who believe that antibiotics do work, without IVIG, and those who believe you try antibiotics first, and if that doesn't eradicate the condition and resulting behaviors, THEN you move on to IVIG. Or a tonsillectomy. Or steroids. Or various combinations of all of these. In our case, we had the first episode at age 6. The second at age 7.5. Then not another one until age 12; that was the "big one" that turned everything on it's head and took a long time (more than 2 years, full-bore, plus another 2 in "partial" interventions) to successfully address. On the positive side, I can add that now (age 21), my DS is no longer "strep-reactive" and seems to have a fully functional immune system that operates as it should. How much of that is due to physical maturity, how much is due to previous treatment, I don't think anyone can tell you. (And even if they did, they'd be guessing.) I just wouldn't want to set you up for a fall by feeding false hopes. Rather, in your shoes, I would proceed with "cautious optimism." I have heard, anecdotally, of kids who were treated very quickly, responded very well, and appear to have gotten past PANDAS altogether. But as I've been participating on this forum for many years now, I can tell you that for every "quick" success story, there are at least 5 or 6 attesting to a protracted battle. It's not always intense or awful, but it does frequently drag out, or dissipate, only to return. Hope for the best, prepare for the worst would be my motto in this regard. All the best to you!
  26. 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. I am curious I have been researching chances of relapse and this page seems to indicate that if given treatment for a year (did I read that right?) or is it the stats were taken a year after treatment...that there is a very small chance these children will have relapses if the original strep or whatever bug is taken care of..I believe she said 25% had a very minor pickup in symptoms with only 2% of the 200 have a complete relapse...so how accurate is this? does anyone have facts and percentages of what the chance of a relapse is? I am doing everything I can for my boy and just am looking at the future....hoping. He has come back around to pretty much 100% normal, we have completed one month of Augmentin with at least 3 more to go...This has worn me down and made me depressed...I pray for all your childern and hope we can put an end to this and let these kids get back to their lives without ocd and tics.
  28. PANS/PANDAS Dr. in SoCal?

    Hi Mare44, I’m in Washington now, but we found a very good primary care doctor Dr. Hau Bai in Chino Hills. She’s a pediatrician as well s microbiology scientist. She Is smart enough to know we would have had lots of problems processing insurance and other services with a diagnosis of “pandas” What she diagnosed was “unknown autoimmune illness” with a referral from DD’s psychiatry doctor to UCLA, they did an assessment report. This got us everything covered under insurance. It also got us a case manager with regional social services. We tried three different pandas aware doctors but none took insurance. That was in 2012. So it appears not much has changed. We were going to head up to the Stanford clinic, but relocated to Washington state And found help at children’s hospital. I think another good place to start would be in children’s hospital Irvine. They have some good interrogative doctors that can rule out Lyme and the like which can cause many of the pandas like symptoms. so I’m a little confused by your post. You have a diagnosis of “pandas” I assume this is a clinical diagnosis? Did they not suggest getting a Cunningham panel to confirm the diagnosis? Wouldn’t the doctor who made the diagnosis be the one to refer you to a specialist? They shouldn’t have just left you hanging with the diagnosis and have no idea how to treat the illness? Some suggestions: paper trails are prudent. Keep copies of all prescriptions, X-rays, scan and the like in chronological order. I made a detailed write up with DD’s complete case history kept electronic records of enerything. This helps with getting new doctors up to speed quickly. My wife made a daily journal. Tracking all medications, supplements, symptoms and behaviors. It is important to note, if possible, the pathological behavior symptoms and manipulative behaviors. This helps with the Physiatrists and social workers. If your daughters symptoms continue, you may end up going through a lot of doctors. hth
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