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MomWithOCDSon

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Everything posted by MomWithOCDSon

  1. Chicago area support groups

    Hi Maryangela -- We're in the Chicago area and I'm unaware of any local face-to-face support groups, though, admittedly, I'm not active in the Facebook group. I'm guessing that between work, family and the additional demands PANDAS puts on all of us, finding the opportunity to meet up on a regular basis is a tough one. That's why I check in here at least a couple of times each week...I can do it when I can steal a moment from all the other stuff! ;-) We did once have a day-long "retreat" at a motel outside Indy that a bunch of us Midwestern families were able to attend; there were folks there from Illinois, Indiana, Michigan and Wisconsin, as I recall. Maybe another "summit" like that would be something to see if we can manage?
  2. Probiotics recommendation

    I think that probiotic supplementation can be almost as individual as antibiotic treatment. Some people don't respond well to some strains, others respond especially well to others. And as for how much? I think that's individual, too. When my DS was on antibiotics, we gradually brought him up to a probiotic regimen that was right around 200 billion per day. Any more and he got gassy or bloated and uncomfortable, but at about 200 billion of a variety of strains (we did Culturelle which is lactobacillus gg, sach b and a high-potency mixed strain via Renew Life), his gut seemed to do well and tolerate the antibiotics reasonably well, too. As with almost everything in this PANDAS journey, I would probably start low and maybe with a mixed strain that has a good chance of surviving the antibiotics and repopulating the gut with healthy microbes. Then build up and/or switch out as you see how your child responds. Good luck!
  3. Probiotics recommendation

    Lordchallen -- I think the rotation that's being referred to here is with respect to probiotics, rather than antibiotics. Meanwhile, giving different versions/strains in the interest of keeping the gut flora varied and strong. As for rotating antibiotics, I'm not sure if there are some protocols that actually call for rotation as opposed to "pulsing," but I believe these specialized antibiotic protocols are most common to Lyme treatment, rather than PANDAS in a general sense. You might search the forum for "Lyme antibiotics," and that may render some responses along those lines.
  4. Psychosis

    Allergies definitely constitute an "immune event," so the immune reaction and its accompanying inflammation could definitely contribute to a PANs flare. I would look into other triggers as well, however, as I don't recall having heard of a "full blown psychosis" reaction to only seasonal allergies. Perhaps she's been exposed to other bacterial or viral invaders, as well?
  5. Adult PANDAS doctor in Chicago?

    The only real "PANDAS doc" in the Chicago area is Dr. Kovacevic (Dr. K.); I believe he has some experience with adult patients, though he is also, technically, a pediatrician. Unfortunately, there is really no one else up here that I've been able to find who takes the diagnosis seriously or is willing to treat it specifically. Maybe someone else will chime in with some more recent luck in this regard. My DS is 21 now and is no longer "strep-reactive," so his official PANDAS treatment is over. He has located, however, a psych who's familiar with PANDAS whom he checks in with periodically as he continues to take Zoloft himself, as there's still an underlying level of anxiety and sometimes OCD, depending on situational stress levels, etc. The other suggestion I might make is that there are several newer integrative/holistic medical practices in the Chicago area that might be more receptive to both diagnosis and treatment of the "whole" person -- body and mind. It seems to me the majority of your DD's symptoms point to immune dysfunction so, yes, it would make sense that her anxiety and OCD are at least in part, if not in whole, products of that auto-immune condition and the inflammation it inspires. The vaginal pain makes me think there might be something impacting/inflaming the vagus nerve, which would also account for some of the other anxiety-related symptoms. Sorry I'm not of more help. It's just been my experience that despite Chicago's "cosmopolitan" and "progressive" reputation, the medical community here can be exceedingly conservative and risk-averse. Perhaps reach out to Dr. K. and see if he is available to help? That might be a first step!
  6. Need Help

    Mountainmom -- is your kid still on an antibiotic regimen? Do you use other methods (supplements, OTC meds, etc.) for helping combat the inflammation from the flare? Yes, kids DO get better! Mine did. But, unfortunately, even though the symptoms and behaviors may crop up virtually overnight, the healing is rarely, if ever, that fast. It is a matter of time as well as a matter of treatment. If your son is not currently taking antibiotics, get him some. If he's taking them but you see no support or improvement via them, talk to the doctor(s) about switching them up. Unfortunately, the flu being a virus, the antibiotics are not going to be of much help there. Did you try anti-virals? In the end, I would go after every anti-inflammatory intervention available to you as the immune response to the flu has probably inspired a lot of fresh inflammation that's behind the flaring behaviors. Maybe talk to the docs about a short course of steroids, though I seem to recall those are frequently not recommended when lyme and co-infections are behind the PANs. Otherwise, ibuprofen, omegas, etc. And if you haven't considered it before, perhaps consider some therapy for your son, too, to help him combat the worries and anxiety that can creep in during and even following flares. Unfortunately, these OCD behaviors/obsessions can dig in and become more pervasive over time if they're acquiesced to and given room to grow. Medical treatment should help him be more effective at using the therapeutic techniques and strategies, but he'll need them in his arsenal to begin with. Don't give up! Relief will come and you're very fortunate to have these doctors on your team as some folks have trouble finding even one doctor who'll help!
  7. Adult with untreated PANDAS?

    Every SSRI works differently to some degree, and that's why some work for some people but not for others. Via Wikipedia, you can pretty easily find the pharmacology of most drugs; here's the page for Luvox (Fluvoxamine) https://en.wikipedia.org/wiki/Fluvoxamine If you pay attention to those "binding receptor sites" ("Binding Profile"), you'll see the brain receptor sites for which any given SSRI is designed to impact. My guess would be that your alcohol intake also impacts those receptor sites, potentially over-burdening or "frying" them when paired with the Luvox intake as well, and it takes some time for them to repair and work properly again. It's also possible that with repeated "injury" via intake of both the SSRI and alcohol combined, receptor sites burn out permanently and the drug loses efficacy for you. Possibly one of the reasons ALL SSRI instructions tell you to avoid alcohol when taking them. I know it probably lacks realism, but given as alcohol is a depressant, with or without SSRIs, drinking is probably not your best move. But I get that having a quality of life is important, too, so you just have to be aware of the possible results. You might talk to your doctor about transitioning to a different SSRI -- one that relies upon a different combination of receptor sites, and therefore might be more efficacious for you now. As for getting the testing, yes, I would imagine that, particularly with respect to the MRI or spinal tap/lumbar puncture, that testing would require some significant physician input/recommendations before you could have those done. The blood testing, though, I think is pretty standard for the most part and shouldn't be all that big a deal -- at least, here in the states, it wouldn't be. Can the distant doctor connect with your local physician and make the recommendation, maybe explain his reasoning a bit, doctor to doctor, so that your local guy feels as though there's another professional voice in the mix? You can try seeing an immunologist, but again, even here in the states, many of them are either entirely unfamiliar with PANDAS/PANs, or they dismiss it as some hoax being perpetrated upon vulnerable families. Again, I would suggest getting your hands on some of the peer-reviewed research on the topic (via those online resources I suggested earlier), downloading them, and taking them to a local doctor who can help get you the testing you need. With some formal documentation of this sort of autoimmune condition being recognized by peers, a doctor who cares and is invested in staying "current" will at least give them a look.
  8. 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!
  9. Adult with untreated PANDAS?

    Good luck, Sascha! Yes, it sounds to me as though this doctor is looking for an underlying infection or, at a minimum, looking to rule out underlying infections out. I think this is a good place to start; it's where many of us started, as well. But you're also right in that sometimes these blood tests do not result in any definitive finding that might explain your symptoms or clearly point toward PANDAS/PANs. At that point, the MRI and/or the spinal tap might become necessary as they can reveal issues that the blood tests may not. I think the doctor is inquiring as to whether medications work for you as there are some schools of thought that say if psychiatric medications (such as SSRIs) alleviate your symptoms, then what you have is NOT PANDAs but a truly psychiatric-only illness. I would be careful in my responses to that question, especially until you have a better sense as to where this doctor is coming from. While many of us have experienced some relief of the symptomology through use of these psychiatric medications, the reality is that it took the medical interventions (like antibiotics, IVIG, etc.) to get to the underlying genesis of the illness, rather than merely treating the symptomology. So if this is a doctor who would dismiss the possibility of an underlying medical illness were you to acknowledge that taking an SSRI made you feel, say, 40% better, then you might want to keep that information to yourself for a bit and focus his/her attention, instead, on your physical symptoms and treatment. Some doctors accept a finding of high strep titers, even if absent any other strep symptoms, as indicative of possible PANDAS; this would go for other titers, as well. Abnormally low titers, meanwhile, might point to an inefficient immune system or lack of adequate immune response, which could also account for some of your symptoms as your body may be left as inadequately defended against problematic microbes like strep. Immune deficiencies are, frankly, more readily understood and viewed as treatable, in my experience, than is hyper-immunity (high titer counts). Either way, information is good armor for facing what the future holds for you in terms of treatment options. WIshing you well with the testing and looking forward to hearing about what you find!
  10. Trileptal & Lamictal for Lyme

    I think Trileptal is an anti-seizure med, also. If you want to hear more experiences with Lamictal, you might use it as a search term on the forum. There were several families, including ours, that used it for a period with success back "in the old days." I'm thinking of Nicklemama and RNMom, for a couple, though I don't think they're active here any longer. Hang in there!
  11. Where are you? What hospital is your daughter currently in? Any more new with respect to test results? Did these symptoms come on suddenly? Is your daughter otherwise neurotypical, or has she previously presented with autism or another neural disorder or "difference"? Yes, these symptoms are ones that can show up in severe episodes of auto-immune disorders, but not every medical professional is going to recognize the signs for what they are. When you had blood tests, what tests were included? You mention having an "immunity test." Via blood panels? What testing is included there? Make sure you're testing for ASO and anti-d-nase b (strep antibodies). Catatonia (even narcolepsy) has been associated with untreated strep infections, and many people are classically asymptomatic for strep -- no fever or sore throat, but raging antibody levels nonetheless. If you're spending time in the hospital, waiting, you might try getting a copy (it's available in digital format as well as paper) of a memoir by Susannah Cahalan called "Brain on Fire." Susannah suddenly developed all sorts of bizarre neuro symptoms, some of which your daughter is also displaying. She was studied and poked and prodded and tested, and they couldn't find the culprit; a set of doctors decided that she had a multitude of illnesses, both physical (seizure disorder) and mental (psychosis), but then one out-of-the-box thinking doctor noticed a few atypical behaviors and kept studying her and ultimately determined that she had developed some auto-immune reaction to some unknown microbe. It's been a while since I read the book, but I don't think they ever found out definitively what it was. I believe Susannah was treated with multiple interventions, but infusions were definitely in the mix, and she recovered. She was in New York, and the doctor who essentially saved her was Dr. Souhel Najjar.
  12. Trileptal & Lamictal for Lyme

    My DS took Lamictal and starting that quite literally kicked his healing and return to the world into high gear; we would give it two thumbs up. Lamictal is supposed to be a glutamate modulator, so when it comes to all the extra "noise" in the brain -- irritability, extra-sensitivity, meltdowns, over-reactions -- it did a wonderful job of giving our DS back his reasoning power. Instead of becoming emotionally overwhelmed in those moments, he was able to be more objective and apply some reasoning to the situation, instead of losing it. And it didn't change his personality; it actually helped him to allow his wit and humor to shine through again. We did not experience any side effects, though I know you have to be careful with the dosing and make sure there's no bad reaction, especially when first administering it. Our two cents! Good luck!
  13. I found this new research interesting: http://www.iflscience.com/brain/adhdrelated-brain-abnormalities-found-in-children-as-young-as-four/
  14. Help....when to be admitted?

    Oh my, I'm so sorry! Your son's description of how he's feeling reminds me vividly of Susannah Cahalan's description of her own auto-immune illness in "Brain on Fire." She, too, experienced paranoia and some other symptoms that many traditional doctors would all too readily dismiss as solely psychiatric manifestations, dispensing with the underlying physical issues. If your son is a danger to himself or to others, you will need to get him immediate help; if that means the hospital, then it's the hospital. Unfortunately, I think it likely that you should expect to be met with some psychiatric interventions -- tranquilizers, at a minimum -- if he presents as agitated or full-on delusional at admissions. You may have reached a crossroads where the abx are insufficient for meeting his illness adequately. Can you get a PANDAS/PANS specialist on board? I know a number of families here have allowed short-term and periodic use of anti-psychotics or tranquilizers (Valium, Seroquel, etc.), just to get there kids calm enough to travel for help, and/or to give the kid and the whole family a break and some sleep. I'm not advocating that, necessarily, but you have to do what works in order to give your kid their best chance at a route which leads to the best healing. Hang in there. Hopefully, someone else will chime in with more direct experience that may resonate with your situation.
  15. Discipline question

    This is tough. Even without PANDAs behavior, per se...say your kid is displaying big-time OCD rituals or compulsions that most therapists will counsel you not to accommodate...it can be hard to discipline with the necessary compassion. I failed frequently when my DS was growing up, a fact he rubs in my face from time to time even now (he just turned 21). I have a couple of suggestions that were helpful for us, if not always 100% successful. Try to do what you can to separate the kid from the PANDAs or OCD behavior, and articulate that if you can. Something along the lines of, "John, I know you know that it's not okay to hit your brother. I'm sorry he messed up your row of Matchbox cars, and I know your OCD doesn't like that. But we don't obey your OCD in this house; we obey the family rules, and that means no hitting for any reason." In terms of the rages that come from trying to enact discipline, I think that's pretty common for many kids, and maybe PANDAs/PANs kids tend to overreact somewhat. I might suggest a book called "The Explosive Child" by Ross Greene. It has some great strategies and tools for working with these kids to bring them into the household rules process, help them feel invested in and rewarded by participating in the family and the boundaries set within your house without the bargaining, raised voices, pleading, maybe even bribery that we sometimes resort to in order to keep some peace in the house. Many of us "old-timers" here on the forum have used this book to varying levels of success, but I've yet to hear anyone indicate that it failed on every level. Good luck to you!
  16. Adult with untreated PANDAS?

    Sascha -- Most of us have gotten a standard immune panel (IgG, IgA, etc.) as out-of-range results here may point to chronic infection driving inflammation. With respect to strep, you should ask for ASO (anti-streptolysin) and anti-d-nase B titer tests. You might check a topic thread on the Pinned Threads at the top of this forum called "Doctors Who've Helped Us." There are a few international families here (Europe, Australia, etc.), so there's a slim chance there may be a German doctor identified there. Also in that Pinned Threads section are topics with symptom charts, diagnostic tools, etc. that might be helpful. There are also threads with links to academic papers and other research. If you have any trouble finding this stuff, message me and I'll help if I can. You could also message me with an email address and I can send you some of the research I've collected over the years; I find doctors here in the states tend to be more respectful of peer-reviewed research than they do internet forum-sourced information. In particular, I'm thinking of a research paper out of Turkey regarding adults with PANDAS, and the Columbia University paper with the antibody research in a mouse model. There are also a number of other forums (PANDAS Network, for instance) that maintain research archives and the like. I think your individual challenge may be supporting the "adult PANDAS" thing as much of the research addresses only children. This blog in a U.S. popular (non-academic) magazine ("Psychology Today") addresses adult PANDAS; Dr. Goodman is a California-based psychiatrist who's fairly well known here for his pro-PANDAs position. In some earlier articles, he advocates strongly for tonsillectomy/adenoidectomy for treating PANDAs (you can probably find those pretty easily on line). https://www.psychologytoday.com/blog/attention-please/201501/adult-pandas-seek-and-ye-shall-find Here's a link to a recent academic paper on adult PANDAS: https://www.researchgate.net/publication/223716976_The_question_of_PANDAS_in_adults The International Obsessive Compulsive Disorder Foundation (IOCDF) is a highly respected institution, and they've begun to incorporate PANDAS programming, research and assistance into their programs and mission. Here's a link to their page regarding PANDAS: https://kids.iocdf.org/?s=PANDAS In the end, all of these, plus some additional research you can find would probably be good information to take to a doctor's appointment with you; still, if PANDAS is entirely unknown where you are, you're likely to need a fairly open-minded doctor, one with a true sense of intellectual curiosity. Failing that, there are at least a couple of doctors here in the States who will do telephone and/or Skype consults, though I'm not sure how helpful that would be if they can't actually prescribe treatment for you over there. You might reach out via their web sites or email, however, and see if there's anything to be had there. I'm thinking of Dr. Trifiletti and Dr. Kovacevich; I believe Dr. K has actually treated a case or two of adult PANDAs here in the States, but he is European, and I believe he still practices to some extent in Europe, as well. Both of these doctors appear in the "Doctors Who've Helped Us" thread I mentioned earlier, but here are links to their web sites: http://pandasinstitute.org/ http://webpediatrics.com/practice.html Good luck to you on your hunt!
  17. A little question about Lyme 504

    Perhaps someone with more direct Lyme-related 504 experience will chime in but you sound anxious about it, so I thought I'd offer what I can. My son suffered from PANDAS rather than Lyme/PANs, but when it comes to schools and accommodations, I'm not sure that there would be a significant difference. In our experience, though, due to the "controversy" that swirls around both PANDAS and Lyme diagnoses, it was easier to secure accommodations that addressed the behavior set (in our case OCD) rather than the underlying illness, specifically. OCD, anxiety, tics are generally easier for a school administration to understand, it seems, and perhaps easier for them to document adequately when it comes to granting accommodations? We decided that, in the end, it didn't matter to us if the school called it PANDAs or OCD, so long as he got the accommodations he needed. My son had a 504 for a few years and then ultimately an IEP heading into high school. What kinds of situations/behaviors at school are you needing to address? Are you anxious? Do you need extra time on tests or to complete homework assignments? Do you need extra absences because of doctors' appointments or not feeling well? A little more information about what would help you might help us formulate some specific suggestions. Hang in there!
  18. Adult with untreated PANDAS?

    Sascha, welcome to the forum. My son, here in the states, was given a "regular OCD" diagnosis at the age of 6. This followed a psychological diagnosis of being a "highly sensitive child" from the age of 3. When the OCD became clinical (mostly contamination), I tried to get his pediatrician and therapist to help me look into PANDAS/PANs, but they were unwilling. Plus, at the time, we couldn't establish a clear connection between strep or any other infection and the "bloom" or waxing of his symptoms, so all of our professionals told us to let it go. When he was 7.5, the OCD came on again with a ferocity that drove us to allow him to be prescribed an SSRI (Lexapro). He functioned well for another 5+ years until he started to really crumble. The OCD exploded, and he couldn't function at all; couldn't attend school, couldn't enjoy his games or television or reading. Everything triggered his anxiety and rituals. Finally, I found Beth Maloney's book "Saving Sammy" which was an account of her son and his journey through PANDAs; it was eye-opening because his presentation was so much like my son's. Also, this was the first time I'd seen an account of a person who was asymptomatic for strep but still had PANDAs. Like my son, Sammy never had a typical strep infection with sore throat or fever, and throat swabs came back negative. But when they drew blood to test for strep antibodies, both Sammy's and my son's were above thei high end of the "normal" range by a factor of 7! That isn't always the case, but for us, it was enough ammunition for us to convince his pediatrician to start taking this PANDAs thing more seriously and try treating it. In the end, my DS was on antibiotics for nearly 2 years, and he was on a hefty supplement regimen, too, for things that were supposed to help beat back inflammation and modulate neuro-transmitters, too, such as glutamate and histamine, which he appeared to have an excess of. We also kept him on an SSRI, though we would up switching to Zoloft. Today, he continues with Zoloft and some supplements, but his OCD has been relatively non-existent for about 2.5 years now; he can still get fixated on things from time to time and will revert back to some mini-rituals in times of high stress, but overall, you wouldn't know him from any other college junior. I think it's entirely possible that your OCD was borne of an infection and an auto-immune response to it, and PANDAS/PANs treatment may help you with it still today. I would add, also, however, that based on our experience where my son went for about 6 years being treated with SSRIs and therapy alone for "regular OCD" and no medical or immune interventions whatsoever, your road in that regard may wind up being longer and more twisty than it can be for kids who are treated young and early. Maybe it's because the brain and its wiring gets more entrenched the older you get, or maybe it's because the metabolism and chemistry your body is developing as you grow finds an equilibrium that's difficult to alter, even if that equilibrium is a less healthy one that yields a chronic condition like OCD. All that said, if you can find a doctor who will help you sort through your medical/mental history and try some medical interventions, I would give it a try. I, myself, am fairly convinced that there's no such thing as "regular" or "common" OCD -- that most, if not all, mental disorders have a medical genesis of some sort. And I think researchers are increasingly finding those links, too. Perhaps medical treatment is all you need to help push that 60%-70% functionality over the line, if not to 100%, at least to a point where you feel truly well. All the best to you!
  19. I'm so sorry you're going through this and, unfortunately, I'm not sure there's any solid answer to be offered. Yes, a new infection (whether viral or bacterial) could set your son back; all infections cause inflammation that may be at the heart of this immune dysfunction, so anything that further tips that scale -- even allergies -- can send our kids into a flare or exacerbate the existing flare or condition. There are a number of theories behind this, but inflammation and therefore increased porosity of the blood brain barrier (BBB) is one that resonates with me as this increases the likelihood that infections and antibodies that would normally be kept out of the brain space manage to get through. There's also the possibility that the inflammation in both the brain and the gut cause dysfunction in the neuro-transmitters and/or receptor sites, impacting balance of substances like glutamate, serotonin and dopamine which are components of OCD, executive functioning, etc. To some extent, it may just be a matter of time, unfortunately, while he stays with the antibiotics. You might try adding ibuprofen and other anti-inflammatory supplements and foods to see if that helps. But if you don't see things die down gradually as the days go on, it might be that he needs a different kind of medical intervention: a different antibiotic, steroids, etc. Also, I might suggest that you seek out a therapist to assist him and your whole family with the increased OCD behaviors. It's an unfortunate symptomology of OCD that it tends to increase and expand its "territory" the longer it has a toe-hold, and when it is accommodated and given room to breathe, that can be even more the case. By developing tools and strategies for pushing back at those obsessions and compulsions, your DS and your whole family can help keep the OCD in check during those flares, hopefully preventing it from becoming a more pervasive and impactful behavior set. In short, I would advocate for a multi-pronged approach to contending with the PANDAS/PANS. All the best!
  20. Pyschiatrist Who Use Ceftriaxone For OCD

    I have a couple of suggestions for you. First, the PANDAS/PANS forum here is much more active than the OCD forum, so posting questions and concerns there might yield you more input. Also, via the Pinned Threads at the top of the PANDAS/PANS forum, there is a topic there called "Doctors who've helped us," with lists and posts from folks all over the country (and beyond); you may find a doctor in your area there who has the necessary expertise and will help with antibiotics and/or other medical interventions for the infection and auto-immune condition that's generally part of the PANDAS/PANs disorder. In our experience, while you may be able to find a psychiatrist who is PANDAS/PANs-savvy to some extent, they tend to see this disorder as a medical one which should be treated by a medical doctor (immunologist, infectious disease, neurologist or even internist); they are not typically predisposed to issuing antibiotic prescriptions. For a PANDAS/PANs-savvy psych, you might try the "Find Help" page on the International Obsessive Compulsive Disorder Foundation web site; once you have a short list of geographically-desirable individuals, I would just start calling and interviewing them to see how knowledgeable (and accepting) they are. We found our last psych via this methodology, whom we used in conjunction with our pediatrician, for treating our DS. In the end -- again, I can only offer our experience and what I've learned via this forum over the years -- you're likely to need to bifurcate and coordinate your DD's care via more than one practitioner. But getting a PANDAS/PANs expert in the mix, sooner rather than later, will likely jumpstart your progress. Good luck!
  21. Child AND parent displaying similar symptoms?

    You might get more specific answers to the "myco p" testing question if you drop it into the search box on the forum; I'm quite certain it's been discussed before. I think a standard immune panel (IgG and IgA) has some indicators, but as strep was our culprit, I'm not wholly familiar with the other culprits. As for the strep swab coming back negative, I would warn you that, in asymptomatic cases at least, they nearly always do. But going back to the immune panel (blood testing), you'll want to request testing for strep titers (antibodies) also via an ASO and anti-d-nase-b tests; one tests more recent strep exposure, and the other tests for exposure further back in time. As for finding a PANDAS/PANS-savvy doctor in your area, I saw your other post to that effect; hopefully, you'll get some responses. You might also check the Pinned Threads at the top of this forum for the topic "Doctors Who've Helped Us." Members have posted doctors' names from all over there during their journeys. There are also a couple of PANDAS/PANs doctors here in the States who will do telephone and/or Skype consults, though I don't believe these are covered under any insurance plans: Dr. Triffiletti and Dr. Kovacevich. OTC inflammatories such as ibuprofen (Advil) have been helpful to a lot of families. Others use anti-inflammatory supplements such as Omega 3's, curcumin and turmeric, and/or try anti-inflammatory diets (usually light on wheat, gluten, dairy and sugar). All that said, though, at this stage of your process, while these might assist in tamping down some of the emotional/mental imbalances you're experiencing, they'll be most effective in conjunction with some medical intervention, whether that turns out to be antibiotics or steroids or IVIG or whatever, ultimately, your care provider and you determine is the best way forward. I believe you're in Canada, correct? I'm not sure how your medical systems and ERs respond to PANDAS/PANs, but here in the states, I would be very wary of taking my kid to an ER seeking testing or treatment for this condition as it is not yet listed in the diagnostic manuals and many doctors and hospitals therefore decide that it is a fabrication of hysterical parents who don't want to accept that their kid has some mental illness. There's frequently a quick leap to psychiatric medications and sometimes even questioning as to the fitness of a parent who's seeking medical, rather than psychiatric, interventions. It's horrid. Unfortunately, some neurologists respond similarly, so I would do what I could to network with other families in your area in order to find the caregivers that are more likely, rather than less, to hear you out without pre-judgment on this topic. Another suggestion I have is that you might purchase a copy (or two) of "Saving Sammy" by Beth Maloney; it has a wealth of information in it for parents, and I was successful in convincing our skeptical pediatrician to give my DS an antibiotic trial on the basis of her history with my DS combined with Sammy's story. If you have a good relationship with your ped, it's worth a try, I believe.
  22. Child AND parent displaying similar symptoms?

    My thought is that it's entirely possible that you and your DD are experiencing similar symptoms via an auto-immune dysfunction; you're related, you have similar immune systems, and you have likely been exposed to similar microbes that may have inspired the reactions. Yes, strep can bring on mental/emotional effects, even in those cases in which the strep infection doesn't inspire a classic physical response (sore throat, fever, etc.). Many people (my DS included, and myself, when I was a kid) are classically asymptomatic for strep, with behavioral symptoms frequently serving as the only clue as to strep exposure and a heavy immune response going on. Your persistent/nagging coughs make me think of mycoplasma pneumonia (myco p or "walking pneumonia), a fairly common bug that is a known antagonist for PANDAS/PANS response. You might try some OTC anti-inflammatories and see if those yield some positive results for either/both of you, and if you have access to a PANDAS/PANs-savvy doctor, I would move forward with getting a professional involved, as well. Especially with kids, the sooner it is addressed, generally speaking, the more effective the interventions. All the best to you!
  23. This just popped up in my feed via MentalFloss. New researching finding a genetic link between these three, "rare" but increasingly prevalent auto-immune conditions. Science marches on. http://mentalfloss.com/article/87506/one-gene-mutation-links-three-mysterious-debilitating-diseases
  24. 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!
  25. 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!
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