Jump to content
ACN Latitudes Forums
  • Announcements

    • Administrator

      Forum Community Guidelines

      Forum Community Guidelines

      Our forums provide support for people dealing with neurological and related issues. Everyone joining this community should find it a safe haven where they are treated with respect, civility, and understanding.

      Your agreement as a user: You agree that you will not use this forum to post or send messages that are knowingly false, inaccurate, abusive, vulgar, obscene, profane, or sexually oriented. Text should not be defamatory, harsh, accusatory, intimidating, slanderous, an invasive of a person's privacy, or violate any law. Doing so may lead to you being banned (and your service provider may be informed). The IP address of all posts is recorded to aid in enforcing these conditions. You agree that the webmaster, administrator, and moderators of this forum have the right to remove, edit, move, or close any topic at any time should they see fit. You agree not to post any copyrighted material unless the copyright is owned by you or by this forum/website. Advertisements, solicitations for services or business, most research requests, as well as any type of research on the content of these forums by third-parties, are prohibited. Unauthorized use or reproduction of posts on these forums is not allowed. Any user who feels that a posted message is objectionable is encouraged to contact an administrator.

      Announcements, media requests, and research requests

      These need administrative approval. Please send to an administrator before posting.

      Inappropriate content

      Members are here for support and education. Check the list below for types of posts that are not allowed: Advertisements Flames or messages meant to intimidate, criticize, or harass others Threatening or obscene messages Messages discussing a private message (PM) from others Copyrighted materials that you do not own the rights to, except educational or research articles Messages containing or condoning illegal acts; also messages of suicidal intent Direct discussion of politics (please avoid) Specific or strong religious views Requests for donations for other organizations unless approved by administrator Solicitation of members for research, media projects or other projects, without prior administrative approval About links for other websites:

      You may have links in your profile as long as they do not violate our guidelines (above). Links within a post to online resources and articles are generally OK. Do not post links to other forum communities with the aim of soliciting other members to that community, thereby taking them away from this community.

      When a guideline is violated

      If you violate a guideline, you will be contacted by PM or email. We will try to resolve things amicably. We don’t like to ban members and rarely do, but this is an option.

      Updated March 19, 2010
    • Administrator

      Disclaimer and Privacy Policy


      The ACN Online Discussion Boards are intended to provide helpful information and allow sharing of ideas. Postings should not be considered as medical advice. All users should consult with their healthcare professional for questions or medical decisions.

      Users must accept full responsibility for using the information on this site and agree that ACN, Latitudes.org, advisory staff or others associated with the site are not responsible or liable for any claim, loss, or damage resulting from its use. Please remember that we do not actively monitor all posted messages and cannot be responsible for the content within. We can also not guarantee that access to the site will be error-free or virus-free.

      Reproducing any document in whole or in part is prohibited unless prior written consent is obtained. Web pages may be shared when passed on with the URL.

      Information posted on the Forum is done so voluntarily and will be accessible to the public. The material posted may be used by ACN (without the identity of the user) for publications or educational purposes. No compensation will be provided for the use of this material.

      Note: ACN is providing this service with the expectation that users will abide by the guidelines provided. We reserve the right to monitor postings and remove or refuse inappropriate and questionable material, as well as remove dated postings at our discretion, for any reason.

      Privacy Policy

      When you register with the Forum, you need only give your email address, which is available only to the Adminstrators and will not be shared on the Forum site or with others in any format. Forum users will see only the user name you choose to provide.

      Our web server collects and saves default information logged by World Wide Web server software. Our logs contain the date and time, originating IP address and domain name (the unique address assigned to your internet service provider's computer that connects to the internet), object requested, and completion status of the request. We use these logs to help improve our service by evaluating the "traffic" to our site in terms of number of unique visitors, level of demand, most popular page requests, and types of errors.

      You have the option of enabling to save your username and password data when you are accessing interactive parts of our websites, to allow your web browser to "remember" who you are and assist you by "logging on" without you having to type your username and password repeatedly. This is known as a cookie and it can be enabled or disabled in your control panel. Cookies are small files stored on your computer's hard drive that are used to track personal information.

      Except for authorized legal investigations, we will not share any information we receive with any outside parties.

      Updated March 19, 2010


  • Content count

  • Joined

  • Last visited

  • Days Won


Everything posted by MomWithOCDSon

  1. Is she taking a regular probiotic, and if so, which one(s)? I would suggest trying sachromycces boulardi ("sach b"), sold in most drug stores under the brand name Florastor, as well as under its organism name via other brands such as Jarrow (you can get it at Whole Foods or Vitamin Shoppe). Sach b is a "beneficial yeast" that supposedly helps crowd out and kill off troublesome yeast organisms like candida. Another intervention we used about once a week when DS was taking abx and probiotics was some bentonite clay. This can be purchased in powder form at Whole Foods. We would stir about a tablespoon into a glass of juice and he would take it before bed; it made the juice a little grainy, but there was no negative impact on flavor. Supposedly, the clay helps "sweep" the intestinal tract of detritus, die-off, etc. and promote a better environment for the beneficial flora to populate. I don't know if that supposition holds up under research, but I will say that it seemed to benefit our DS. He was taking abx and probiotics regularly for nearly two years, and we did not have any yeast or c-diff issues. Good luck!
  2. 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!
  3. Ela -- Sorry to say, it isn't just Wisconsin, nor is it limited to more rural areas. We're in the Chicago suburbs, and it took us 6 years for anyone to take us seriously regarding PANDAs. The issue here is that the area's leading pediatric immunologist and infectious disease expert is a virulent PANDAS/PANs naysayer, and he's heading up our teaching hospital programs, as well. So every pediatrician who comes through this prominent program tends to come with the same attitude: that PANDAS/PANs is a condition "made up" by the internet and parents who simply refuse to accept that their children have, overnight, become mental disaster zones. We finally got help and some relief when, at 12, our DS fell off the cliff with respect to his mental and emotional state. "Saving Sammy" had just come out in the bookstores, and after I read it and realized my DS was practically a carbon-copy of Sammy, I took a copy of the book to DS's regular pediatrician and begged her to help us. She'd known DS for many years, and I think she realized that who he appeared to be at that point bore little resemblance to the sweet, calm, inquisitive boy he'd been before. She remained skeptical about PANDAS/PANs but agreed to provide us with a 30-day antibiotic trial based on Sammy's protocol and her oath to "do no harm," which she felt trying antibiotics might do nothing, but it wouldn't harm our son. When our son began to improve almost instantaneously (within 48 hours), I started keeping her abreast of his improvements via "snail-mail" notes (she didn't have email, and she wasn't insistent that we bring him in regularly). And because he continued to improve with abx and seemed to initially regress when we ceased them, she continued to renew our prescription for quite some time. Now, the rest is history. Our DS had also been under the care of a psychiatrist since the age of 7 when the OCD he'd first displayed at 6 stopped responding to CBT alone, we couldn't get anyone to take PANDAs seriously, and he never showed classic signs of a strep infection. So we continued with therapy and psychiatric supports while he was on abx therapy for the medical issues, and he continued to improve. We switched to a psychiatrist who, while not willing to "treat" PANDAS specifically as she felt that it was a medical condition which should be addressed by a pediatrician or other medical specialist, accepts PANDAS as a viable diagnosis and thus is mindful as to other interventions she recommends alongside PANDAs treatments. Healing was not instantaneous and the mental/emotional challenges continued for some time, also, perhaps because he went so long without adequate treatment for the underlying autoimmune issues. That's one reason we stuck with the psych and therapy, along with the medical interventions; we wanted him to have as much support as possible so that, hopefully, he could climb out of the hole quicker and with less overall stress. But he improved steadily and returned to being not just functional, but happy.. Hang in there, and keep dialing for dollars. There are other folks here who have or still do live in Wisconsin. The International Obsessive Compulsive Foundation web site has a "Find Help" page where you can search for geographically proximate professionals to help you. I found our psych on this site; I called every one of them and interviewed them about their knowledge and acceptance of PANDAS/PANs before I even considered making an appointment. And consider enlisting a current caregiver/doctor for help; someone who's known your son for many years, one would think, could see that he has fallen victim to something atypical, and they might be willing to step outside their comfort zone like our pediatrician did and give some help, even if only temporarily while you search for other options. All the best to you!
  4. Sensory Processing or PANDAs?

    Kelly -- I suspect it is a combination of both...an unfortunate marriage of a genetic susceptibility and the PANDAS-related inflammatory response. And it may not be a "flare" so much as a continuation of the original PANDAs/PANS immune onslaught; many of us find that a "typical" or shorter course of antibiotics is insufficient for fully addressing our kids' conditions, so a two-week course may not have fully addressed the "animal" that is PANDAS/PANs. Our DS, too, had some mild sensory issues prior to a the full-blown PANDAs episode that sent us into a tailspin. Once the PANDAs hit full force, we had him professionally evaluated and as with most of his behavior set, the results came back "borderline." During PANDAs, he was alternately identified as "borderline" a number of things: OCD, Asperger's, PDD-NOS, Sensory Processing Disorder. You name it, the poor kid, at one point in time or another, wore a label for it. What I can tell you is that, with the conclusion of effective PANDAs treatment, the sensory and social issues resolved 100%. One doctor even took steps to revise his file to remove the former ASD notation he'd made there. I would say, however, that I don't think you are wasting any effort in giving her access to OT; I think it will only help her as she heals and enforce positive behaviors and coping strategies that will stand her in good stead going forward. All the best!
  5. C Diff or Stomach Virus

    The only person I've ever personally known with c-diff presented not only with diarrhea and malaise, but he was sick, sick, SICK! High fever, total lack of appetite, etc. I would try adding another good quality probiotic, maybe a multi-strain one (Culturelle is a single organism) and see if that helps balance out his gut a bit more. I'd also try adding Florastor (or another brand of sachrommyces boulardi -- Jarrow makes a good one) as it is very effective against diarrhea and is also identified as a beneficial yeast which can be good for "crowding out" the troublesome invaders (like c-diff and candida) that tend to take over when antibiotics kill off much of the beneficial bacterium and yeast. All that said, you know your kid, so I would trust my gut, too. If you really think its possible he's developed c-diff, I'd get him tested. That's not something to mess around with. Good luck!
  6. Antibiotics during flare question

    There are studies that speak to other properties of various antibiotics. For instance, beta-lactam antibiotics are thought to have glutamate-modulating properties, and another class (cephalasporins, maybe? my memory isn't what it used to be) are anti-inflammatory. And if your kid is taking Augmentin, for instance, that clavulanic acid component (Augmentin being amoxicillin plus clauvanate) is thought to have some neuro-protective characteristics of its own. There are multiple, older threads here about various antibiotic characteristics, and a Google search will give you some answers, too.
  7. I'm guessing that "Just Ranting" section got deleted because it wasn't being used much. Or perhaps someone took to ranting about a specific doctor or caregiver, and it wasn't viewed as constructive or appropriate? Whatever the case, though I'm not a moderator, I'd say rant away, if feeding off some of that negative energy will help you feel better! We all need to blow off some steam now and again!
  8. New to PANDAS, extremely high DNAse B

    How old is your son? Does he have an ASD or Asperger's diagnosis? My son had certain ASD characteristics beginning about first grade, also, but nobody actually thought they were pervasive enough to "qualify" for ASD. He also developed OCD at about age 6, but we couldn't get anyone to take us seriously with respect to PANDAS. Fast-forward to age 12 when we finally succeed in getting him tested, and not unlike you, his titers were off the charts in terms of the "normal" lab range: 770, in our case. Glad you've got some ready response! If you can spare a few minutes each day, you might try keeping a journal about your son's behaviors as it could be interesting what you might find he leaves behind and what new skills he may demonstrate as the abx go to work! Good luck!
  9. Desperate for Sleep

    Mountainmom -- That's interesting about the antibiotics. From what to what (the switch, I mean), if I may ask? Did your doctor offer an explanation? Was it that the first antibiotic was thought to be ineffective over all and that was contributing to the sleeping problem, or is it that the new antibiotic(s) have properties that are better targeted toward sleep/rest? Glad you found a solution!
  10. Duration of antibiotics?

    My DS was older than your DD when we started PANDAS treatment but, yes, I think you'll find many, many anecdotes of longer courses of antibiotics being necessary for PANDAs; the reasoning is not entirely scientifically addressed as of yet, but there are a lot of theories out there: strep or other bacteria still present in the body and thus prolonging the autoimmune response, molecular mimicry tricking the immune system into a continued response even though the bacteria has been eradicated (immune dysfunction), other properties of antibiotics that support our children's healing besides eradicating bacteria (anti-inflammatory, glutamate modulating, etc.). In the end, most of us use a 30-day course, at a minimum; some of us, ultimately, have kept our kids on antibiotics for prolonged terms; mine took 1,000 mg. of Augmentin XR twice daily for almost 2 years before we were able to successfully wean him off without his PANDAS behaviors returning. In conference forums and exchanges with the experts in the field, while they prefer shorter courses of antibiotics over longer ones, there is some evolution of the thinking along these lines. A few years ago, Dr. Swedo (the NIMH researcher who "discovered" PANDAS) allowed that she could support a longer course of antibiotics if necessary. All told, the primary concern was not antibiotic resistance but c-difficile, a detrimental gut flora that can take over when antibiotics kill off all the beneficial bacteria and is extremely hard to eradicate once it takes up residence. So keeping your kid's gut populated with good flora, replacing the die-off caused by the antibiotics, is key, during antibiotic treatment. Good luck!
  11. Desperate for Sleep

    Only two thoughts outside what you've been trying: 1) time-release melatonin (maybe it would help him stay asleep for longer stints; and 2) valerian root? Valerian stinks like dirty sweat socks, but it really helped us at points.
  12. PANDAS and Sinus Surgery

    MarcyJ -- You might try reaching out to a forum member who goes by the name Kimballot. Here's a more recent thread posted by Kim with a summation of the family story: Kim's kid underwent sinus surgery and, as I recall, it kicked off a road to pretty much full recovery. Probably have a lot of information and experience to share along these lines. All the best!
  13. Here we go again...

    Bttrfly1 -- I'm neither a doctor nor a scientist, but I would venture that the tendency for multiple kids in a family to be susceptible to PANDAs/PANs is part and parcel of one or both of the following inheritable conditions: 1) the constitution of one's immune system; and/or 2) one's methylation cycle and any mutations that potentially impact one's inherent ability to properly process nutrients, maintain neurotransmitter balance and control the body's inflammatory responses. The methylation cycle and all of the genetic code and mutations stuff is way over my head, but you can find multiple threads with some good information here on the forum. I'm sure the prospect of a second kid with PANDAs/PANs challenges is a daunting one, but it might help to remember that susceptibility, and even genetic mutations, don't necessarily result in gene expression or manifestation. And forewarned can be forearmed, so there are likely some steps you could take during your pregnancy and your new child's early months/years that might curtail or even potentially prevent any future expression of PANDAs/PANs issues. I'm not sure what part of the country you're in, but Dr. Kenneth Bock in New York State runs a medical practice which is aimed at promoting the healthiest possible in-utero environment and nutritional and health practices for infants and children that result in strong, healthy, "neurotypical" immune systems. If his practice is an option for you, it might be something to consider. I've heard him speak and read his book (Curing the New Childhood Epidemics: Allergies, Asthma, ADHD and Autism), and he's quite impressive. All the best to you!
  14. When will antibiotics start working?

    In my experience, the fact that you're seeing palpable improvements, even though they might not be the larger ones you'd hoped for, speaks to the efficacy of the antibiotics. We saw some improvements within a few days ourselves. But it may take longer for the impulse control and meltdown issues to die down, especially given her age and developmental stage; I mean, most "normal" 4-year-olds will meltdown and/or participate in impulsive acts at inappropriate times, so to be contending with that still, especially following an atypical outing (neurology appointment) that was likely stressful for her, isn't surprising to me. We found that our DS (though he was older than your DD -- 12 at the time PANDAS came on full bore) struggled with meltdowns and age-inappropriate behaviors most when he was stressed by an activity or outing that stood out from the daily routine, asked something of him (talking to a stranger, talking to a doctor) that was hard for him, etc. And, unfortunately, that behavior carried over for a bit, gradually dissipating as he got healthier and healthier. I found it helpful to keep a journal during his treatment so that I could keep track of improvements, set-backs, positive things that he'd been able to do before that he'd not done since the PANDAS, but then we saw return bit by bit over time, challenges that he had after diagnosis that he was able to shed over time, etc. It helped me be a little more objective about his progress. Plus, PANDAS healing has something of a notorious "saw-tooth" pattern for many kids (2 steps forward, 1 step back), so tracking things can help you identify patterns, if there are any. All the best!
  15. Probiotics recommendation

    Hmmm. Perhaps the improved results (in terms of OCD) on Renew Life had less to do with the brand and more to do with the strains of bacteria in the supplement? I know there is literature out there that reports on at least one study with respect to different strains being more and/or less beneficial for various issues, but I can't seem to lay my hands on it right now. I know Klaire Labs is highly respected, so I wonder if you could "match" your former Renew Life formula with one of their products? We also like Jarrow Sachromycces Boulardi (same strain as is in Florastor but less expensive than the Florastor brand name) and, believe it or not, Culturelle, which is readily accessible and affordable via most drug stores. It's purely lactobacillus GG, which is supposed to be good for combatting anxiety and depression (and hence tends to be pretty good for addressing OCD, also). Good luck!
  16. School

    What you say is very true. But some other "conditions" like "standard OCD" also have periods during which the behaviors or more or less pervasive than others, so a PANDAs or PANs presentation may not be all that atypical to at least someone in your school (most likely the psychologist, if there is one). And I know all schools are different, but we found that, for the most part, they were willing to "roll" with our DS's capabilities at different points in time -- asking more when he was clearly capable of more, but easing up when he would have a tough day or even a tough week. I know we were blessed with our school and the advocates our DS was fortunate to have within, as I've heard some much more difficult stories from other families. But I guess I'd encourage you to shoot for a positive outcome and maybe hone in on one or two teachers or administrators in your son's school that seem to "get him" maybe just a little more than others, and see if they can help you advocate for the right accommodations and approach for him. All the best!
  17. tonsillecomy - oxy or tylenol

    No experience or words of advice to offer, Smarty...just wanted to say "Hi!" and glad to hear (knock on wood) that things appear to be going well! You've earned it! Happy holidays!
  18. School

    My DS was older than yours by the time his PANDAS was such that it really made school an issue, but I can certainly relate to what you're currently experiencing as my DS first got a "regular OCD" diagnosis at the age of 6, just a few months into his first grade year. Do you have a therapist involved in your DS's overall treatment plan at this point? Obviously, we had one because we couldn't get anyone to sign on to PANDAS at the time, let alone treat it, but he was a good resource for in-school and at-home strategies for addressing our DS's OCD (mostly perfectionism, which led to either over-erasing or avoiding writing down anything at all, for fear he would get it "wrong" somehow) and attentiveness issues. Mostly, at the time, we made appointments with DS's teacher(s) and the school psychologist (maybe social worker, too, if there is one), gave them some material about his behaviors and what they might see (you could add "during a flare"), and any suggestions we might have for accommodating him reasonably in the standard classroom but not at the expense or disruption of the other students. It appears your teacher is doing that with her timer tactic, though you may be right that it might increase his anxiety and, ultimately, he may still fail to "cooperate" because that OCD fear of doing something wrong will typically outweigh the fear of displeasing the teacher, in our experience, anyway. It would probably be helpful to get the school psychologist and/or social worker involved, if possible, because they can help the teacher with appropriate strategies in the classroom, too; yours is likely not the first kid who needs some accommodations that they've come across, with or without a PANDAS diagnosis. They might wind up suggesting a 504 Plan which would be something to consider. I would also suggest the book "Students with OCD: A Handbook for School Personnel," by Gail B. Adams, ED.D. I bought copies for myself and for my DS's administrator and psychologist when it first came out. In remembering that the school is not equipped to "treat" PANDAS or OCD, but that their goal is to give your kid the best education possible, before, during and after illness or a flare, giving them tools to meet the primary behavior set in the school setting, IMHO, is really all that we can ask of these folks. The ideas and suggested accommodations in this book are really, really helpful, in our experience. And because they come from a "third party," we didn't get a lot of pushback as though we were advocating for something that was inappropriately lenient or anything. In the end, it might be that your DS needs to have auditory assessments, rather than written ones, during a flare so that he's not required to write things down on paper for a period. He might need some alternative assignments, depending on what's at hand; for instance, my DS HATED "coloring" as his small motor skills were never up to par when he was sick and that messed with his perfectionism (staying within lines), plus, he quite honestly thought that the very act of "coloring" was a waste of his time; some kids love it, he hated it. So the teacher came up with some other options for him that were more "spatial" and less triggering for him. We were also able to get them to eliminate some of the "busy work" -- tasks and/or assignments of nominal value that were more "crowd control" and "quiet time" undertakings than they were teaching of basic concepts. So, in other words, if he could demonstrate his mastery of the math by doing 5 problems instead of 10 (many of which were repetitious), then he was awarded grading in accordance with the reduced quantity of problems he was assigned. Good luck to you!
  19. Caught in a Loop

    Wow, that's a tough one. That sort of "thought OCD" is really hard to address, particularly as our kids get older and better at concealing some of the stuff that goes on in their heads. Chances are, if you adopted a no-tolerance policy and "bumped" him out of that train of thought whenever you caught him doing it, he'd just find ways to conceal it better, leaving you thinking maybe he'd managed to shake it, but instead he's still indulging in it. If anyone else has ERP suggestions for this, I'd be interested in hearing them. I will tell you that we were never especially successful with ERP for this sort of pervasive thought OCD, given as the typical ERP tactic would be to somehow expose them to the fear itself. But how do you expose him to these symptoms that he's so dreading and desensitize him to them when 1) they can be very real, in fact, 2) in the long run, it's probably a good thing that he's sensitive to how he's feeling because it can help him take appropriate steps in the future, and 3) "giving" him, or asking that he pretend that he has, in fact, developed these full-blown symptoms that he fears, I'm not sure will desensitize him to them. I wonder if maybe some sort of PTSD treatment might not be more applicable here, since it seems that's really a good bit of what's going on? The perseverating over it is OCD, but the fear itself is very PTSD like, don't you think? As for him seeking reassurance, my experience with ERP would be that you would be encouraged to withhold that, rather than feeding that monster. Really tough to do. FWIW, when my son became a teenager and we felt we'd pretty much exhausted our ERP techniques and strategies, finding them lacking for, especially, pervasive thought OCD, we moved on to ACT, Acceptance and Commitment Therapy. It basically approaches these intelligent, analytical thinkers with a response that says, that's what you think, but that's just a thought and nothing more than a thought. And it has no more power than a thought such as "There's an apple on the table" unless you GIVE it more power. Accept that you have thoughts, both positive and negative, and commit yourself to prioritizing and acting upon those thoughts that are beneficial to the life you want, and accepting those thoughts you have that are generally less constructive, but giving them no additional power. More nuanced than that, of course, but that's more or less what I carry with me from our ACT experience. And, in the end, it did help my DS. Sorry not more help, but hope you find some relief soon!
  20. Cause of uptick in symptoms?

    Unfortunately, I think that with our kids, particularly once the autoimmune reaction is set off to the extent that we discover PANDAS/PANs to begin with, any number of things can trigger an "uptick" or a flare: allergies, stresses, lack of sleep, viruses, bacterial infections, etc. From our experience and reading through some of the research, my understanding (and theory) goes something like this: autoimmune response is, at least in part, inflammation. Inflammation, particularly of the blood brain barrier (BBB), can give birth to all sorts of physical and mental responses as an inflamed BBB does not function as it is intended; an inflamed BBB becomes more porous, letting antibodies and other materials in that belong out, and possibly allowing some substances (neurotransmitters like serotonin) out when they should stay in. In our experience, it can take a while to get off that merry-go-round -- to calm things down sufficiently to the extent that the BBB returns to full health and proper function, and the brain is once again insulated against continued antibody onslaught and/or loss of helpful neurotransmitters, etc. So, all that's to say that I would do whatever I could to calm that inflammatory response: ibuprofen, curcumin, Omega's, exercise, regular and proper-length sleep, etc. Between that, the abx and good old-fashioned time, hopefully, things will settle out and get less volatile. Best to you and yours!
  21. what is next best anti-inflammatory?

    DS takes two capsules in the morning, and one in the evening. I, on the other hand, just take one each morning. My histamine isn't as perpetually high as his tends to run, however.
  22. Recovery Time

    I'll offer that the younger the child and the quicker the proper diagnosis and treatment, the quicker the recovery. At least, that's my long-term impression from participating here and other support groups/forums over the last several years. Conversely, in kids who go longer without the "catch" and/or are older by the time PANDAs treatment is made available, the harder it is for them to "snap back." Kind of like a rubber band; newer, tighter ones tend to snap back to their original shape, even if they get stretched out a few times. But older ones lose some of their elasticity over time and can even become brittle so, like bobh said, they might only come back to 90% of their original size/shape or, in the most unfortunate/complex cases, they might even become brittle enough to break. But even with what may appear to be a full or nearly full recovery, I do think you will want to remain mindful and vigilant for subsequent flares. More often than not, they're part of the package for a kid who's immune system is predisposed to dysfunction. Employing prophylactic measures should prevent those from becoming full-on "episodes," but they don't always fully offset the new immune injury. Good luck!
  23. This is what I struggle with....

    I will second bobh as a mom of a kid who first presented with OCD at 6, first "retreated to normal" for about 1.5 years, then had another blip which once again retreated (with therapy and medication) for more than 5 years before it came roaring back at age 12 and was much more intractable and much harder/longer to treat. We could not get any support for PANDAs treatment or diagnosis at 6 or even at 7.5, and had to fight for it tooth and nail at age 12, but at least by that time there was more literature, more support and more medical professionals joining the fray.. I would err on the side of treating a possible case of PANDAs. As our pediatrician at 12 finally reluctantly agreed to give us a longer trial of abx, despite her professional opinion that PANDAs remained an unproven diagnosis, she "took an oath to do no harm, and I don't believe an abx trial will harm him." That was the beginning of my DS's recovery. Sometimes you have to trust your instincts! Moms (and dads) tend to have pretty great ones when it comes to their kids!
  24. what is next best anti-inflammatory?

    We never tried dao histamine blocker, but I can speak in the affirmative with regard to quercitin; really seems to help with really no side effects at all. In fact, DS and I both had been taking it for years (DS is a junior in college now), and when I ran out a few months ago and DS was away at school, I decided to just let it go and stop taking it. After my mold allergy started ramping up, however, and I couldn't get relief from Zyrtec or any other typical OTC measure, I went back to taking quercitin, and within about a week, I had significant relief. Great stuff! We like the "QBC Complex" from SolaRay as it also has Vitamin C and bromelaine, along with the quercitin.
  25. Personally, it sounds to me potentially like another instance of labeling a set of behaviors, rather than digging down into the genesis of the behavior. School refusal and flat out avoidance of stressful (or to be more precise, potentially stressful) activities have been, in our experience, a classic presentation of high anxiety. And if that high anxiety is the result of an autoimmune disorder, then you can slap any label you want on it, but that doesn't change what it is at its root. If UK professionals are treating this "syndrome" to address the behaviors but aren't extending beyond that surface to address the underlying cause, the response is likely to be incomplete and without staying power, IMHO.