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MomWithOCDSon

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MomWithOCDSon last won the day on April 30

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About MomWithOCDSon

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  • Birthday January 31

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    Female
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    Midwest
  • Interests
    All things PANDAS, OCD, travel, pets, education

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  1. 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!
  2. 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.
  3. 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!
  4. 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?
  5. 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!
  6. 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.
  7. 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?
  8. 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!
  9. 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!
  10. 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.
  11. 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!
  12. 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!
  13. Hi MomWithOCDSon, I tried to send you a PM but it said you could not receive messages. Is there anyway else I can reach you? I’m a teen with a story very similar to your son’s and was wondering if I could get your advice on something.

    1. MomWithOCDSon

      MomWithOCDSon

      Hmmm.  Don't know why I can't receive messages; so far as I know, my box here on the forum is not full!

      Feel free to email me directly, if that would be easier.  My email address is:  nmyers@arcadiastreet.com

      All the best!

      Nancy

  14. 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!
  15. 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.
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