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MomWithOCDSon

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  1. MomWithOCDSon

    24yo w/ PANDAS - need help!

    tsh_73 -- Sorry for what you're going through. Unfortunately, yes, I think many of us -- and many of our kids -- were dealing with PANDAs for years before a diagnosis of such, and the impacts are wide-ranging and probably unnecessarily prolonged due to a lack of recognition in the general medical community. It sucks. As for the most proximate and PANDAs-literate doctor to you, I imagine Dr. Latimer (DC area, I believe) is probably it. It will take a while to get an appointment, however, and I don't know what her insurance acceptance situation is currently. Many professionals in the field have gone the route of private pay only, leaving the insurance fight for reimbursement solely in the hands of the patients; they can't afford the manpower or the time required to fight with the insurance companies over treatment protocols, etc., I expect. I commend you for seeking the root and basis of your auto-immune issues, and genetic testing will likely give you some clues. Unfortunately, though, the auto-immune cascade that can lead to PANDAs and other "rare" conditions is still emerging science, and even if you or a medical professional are able to identify some mutations that may underlie your condition, treatment is still likely to be something of a trial and error process. If you can find an integrative physician in your area, that might be your best bet as a PANDAS specialist like Dr. Latimer is unlikely to have sufficient availability to walk with you through all of the trials and tweaks. I know many people have had success with these underlying issues by closely examining and addressing the methylation cycle. Certain gene mutations make the cycle inefficient and/or lopsided, and that, in turn, can impact the way your body processes various substances, balances neurotransmitters, etc. I only know enough about it to be dangerous rather than helpful, but an integrative physician should be enormously helpful in this regard, and you can search this forum with key words like "methylation" and garner a lot of information. In the meantime, may I ask, what is your concern about trying the rituximab and see how your body/brain responds? Afraid of the drug itself, or afraid it may mask the symptoms you're attempting to ferret out the root cause of? I'll just offer that, in our experience, this is something of a long, twisty road, and if you are at a point where you're having trouble functioning in the world, dismissing options that may help you be more functional, if not "fixed," may make your road tougher. It's a very personal decision and I respect your right to make the one that feels right to you. At the same time, I have seen with my own eyes the benefit that some medications gave my DS while we fought the PANDAs and returned his immune system back to a healthy status. Finally, I'll just add that your dialated pupils, sleep disturbances, mood crashes and reflux could be histamine related, histamine being a necessary neurotransmitter, but in a dysfunctional system, over-produced or over-absorbed to a level that can result in some of these symptoms. This is another piece of the methylation cycle that treatment can help correct, though, again, if you're looking for some temporary relief, a histamine receptor (H2) antagonist like Pepcid may help short term. Wishing you all the best!
  2. This popped into my social media feed today, and I thought it was very interesting. http://mentalfloss.com/article/65710/9-nervy-facts-about-vagus-nerve
  3. MomWithOCDSon

    will Normal return?

    Hope -- We didn't experience this particular manifestation of the PANDAS "aftershock" either, but I can see how it might happen this way. I'm betting, like me, you attribute much of his braggadocio and narcissism to some deep-seated insecurities he's dealing with, likely at least in part to his health battle and him having a pretty good idea of how far behind he's fallen both academically and socially as a result. We, too, battled with how best to handle the emergence of a healthy teenager for whom truly age-appropriate behavior had been outside reach for a number of years. But I don't think you should be, in any way, ashamed of yourselves for wanting even more for him and for yourselves; the job isn't fully done until he's ready to face the world and be a part of it, rather than proactively separating himself via boorish behavior so that he can stay "separate," "different" and not be expected to deal with real world consequences and expectations. To me, it almost sounds like a form of OCD. In my experience, for most kids in a similar situation (including ours), this coping mechanism took the form of avoidance, as in more quietly and meekly avoiding anything or any situation that was uncomfortable. Perhaps your DS is practicing a more active, belligerent form of that, pushing everyone and everything away before it can ask anything of him? In addition to monitoring and perhaps considering some changes in his medication, I would consider some therapy -- perhaps aggressive therapy. You didn't mention this among your current protocols, so perhaps you've tried it but felt it wasn't impactful, or perhaps he puts up a stink about participating. But I really think a good therapist could help substantively in this situation, helping you empower your DS while at the same time holding him accountable for the best behavior he's capable of. In particular, I'm thinking of ACT therapy (Acceptance and Commitment Therapy) which, in my experience, can be very effective with bright, even manipulative, adolescents. Also, if you haven't already, you might take a look at "The Explosive Child" by Ross Greene. I realize your DS isn't classically "explosive," but it does sound as though a good bit of his behavior might be his way of trying to control situations in which he still feels somewhat out of control. And that, even though he's a teenager, his behavior isn't entirely age-appropriate, either. There are some problem-solving techniques in that book that we found very helpful in terms of our family dynamics and dealing with our DS as he was coming out of the worst of his PANDAS and wanting more independence and authority over his life. All the best!
  4. MomWithOCDSon

    Does this sound like anxiety?

    Yes, Dr. Murphy has actually written the definitive paper on PANDAS kids and SSRI's, advocating that lower doses are generally appropriate for them, if SSRIs are applied at all. She'll know more about the "why's" behind that, but it's probably good advice for all kids, generally. One of Dr. Murphy's former colleagues, Dr. Eric Storch (I believe he even co-authored that paper, or has co-authored other papers with Dr. Murphy) taught a session at an IOCDF (International Obsessive Compulsive Disorder Foundation) conference several years ago for therapists, psychs and other practitioners working with ASD patients. Like you, I basically consider myself a "practitioner" in my son's care, and given his ASD presentation at the time, I decided to attend that session. Interestingly, ALL of the practitioners in that session -- no exceptions -- reported that low-dose SSRI's were most effective for their ASD patients. Now maybe many of these ASD-presenting folks were undiagnosed PANDAS, or maybe there's something about the brain chemistry that's a common denominator in both diagnoses, but I found that interest. Another finding in the room that day was that Zoloft was an SSRI favored among the group, including Dr. Storch at the time, for kids. Based on that session and some subsequent conversations I had with Dr. Storch, we tried low-dose Zoloft for my DS during that PANDAS episode. Most PANDAS families start their kids at about 1/2 the typically prescribed dosage, so for the case of your young DS, that might be as low as 12.5 mg/day. But because SSRI's take 4 to 6 weeks to become fully effective (inhibiting the uptake of serotonin for an adequate period that the brain registers the higher available levels), it can be a long road, going "low and slow." Just a heads-up. But it can be effective; it was for my DS, though we eventually titrated up to a dose of 75 mg./day for him (but he was older and presumably larger than your DS at the time, so I would think he'd likely metabolize it differently). There are a few other "psych meds" that some of us have found help our kids during their healing, most of them used off-label. We had a psych somewhat versed in both PANDAS and ASD who, given our son's presentation at the time, thought that lamigotrine (Lamictal) might be helpful for him as it is thought to help modulate brain glutamate. Putting this drug in place marked a turning point in his behavior as it helped him calm down and react more rationally in uncomfortable situations, without dulling his personality or energy at all. There have been a few other families on this forum who've implemented this med, as well; you can search for it and find those discussion threads. Please note I'm no doctor; I'm just a parent like you who wanted the highest possible quality of life for my kid, despite this illness. All of these meds can have significant side effects, and there are many -- here and elsewhere -- who would urge you to forego this kind of "Band-Aid" and focus on the medical illness behind it and interventions effective for that. And I recognize the merit of that. But similar to you, I felt like there was an "ideal" and there was real life, and in real life, my kid had, to attend school, I had to work, and I wanted him to have some enjoyment and happiness even while he healed. Also with respect to school, you might consider getting a 504 Plan? This would grant your son some accommodations (like alternate activities that he perhaps would find more engaging?) and supports that might help him stay in the classroom without being disruptive. If he needs more support than that, an IEP is also an option; it comes with more in-place supports. Sorry you're going through this, but hopefully he'll heal some more between now and school, making it easier for him to return.
  5. MomWithOCDSon

    Does this sound like anxiety?

    I can offer some of our experience, which sounds very similar to yours. My DS was diagnosed with "regular OCD" at 6, so, yes, an anxiety disorder; his just happened to manifest in a hand-washing compulsion which he used as a coping behavior, particularly at transitions. I found references to PANDAS at the time and knew my DS had been exposed to strep (though he didn't "catch" it, in the classic sense), but I couldn't get any of his caregivers to take me or PANDAS seriously at the time. We got him some therapy and he more or less "bounced back" within a couple of months. His second serious bout of anxiety and OCD hit at about 7.5, and this time it was accompanied by some other behaviors that looked similar to ADD and some ASD: periods of detachment, trouble focusing, lack of interest in peers' activities. We had him assessed for Sensory Integration Disorder (SID) during this period, and like a lot of other things we've had him tested for over the years, the results came back "borderline." IOW, he had some "tendencies," but he technically didn't qualify for the "label" because, in the end, his score wasn't high enough. Again, all of this "cleared up," this time with therapy and a low-dose SSRI (Lexapro, at the time) within about 4-5 months. Still picky about some sensory things (clothing labels, socks, shoes, etc.), but nothing we couldn't solve. We didn't hit another seriously disruptive set of behaviors -- predominantly anxiety-driven -- for several more years, until my DS was 12. That's when things went seriously off the rails. Until we finally hit upon a PANDAS diagnosis and treatment, various doctors and psychiatrists labeled him with OCD, ADD, generalized anxiety disorder, bi-polar, Aspergers, ASD, PDD-NOS...you name it, someone had dropped the term into his file! Ironically, it was the school psychologist who conducted the testing for his IEP, along with the social worker, who came back to us with those results and said yes, he had several "tendency points," but in mass, not enough of any one disorder marker to definitively indicate any single disorder. All of this testing and labeling took place during his most disastrous PANDAS episode, and I agree that he could appear seriously wacky at times! Fast forward to following successful PANDAS treatment, some time, some coaching and some more therapy, and ALL of those issues evaporated! One doctor officially removed the "ASD" from his file, and another struck through the "PDD-NOS." He continued/continues to "rev a little high," as I call it, i.e., contend with some anxiety, though on a non-clinical and manageable level. But in terms of any attention or social deficits, there are none, and he's a "social rockstar" as compared to a lot of his fellow engineering students in his college program! Long way of saying, yes, I think your DS's behavior at his day camp are likely anxiety related and PANDAS driven; he's having trouble maintaining himself in a group social situation in which he doesn't get to call many, if any, of the shots, and in which he's expected to conform, despite the noise that's going on inside his head. We saw much of the same in our DS when he was in those situations/settings. His seeming emotional detachment, I'm guessing, is his mind's way of "keeping it together," even though, inside, he may be screaming about how uncomfortable he truly feels in these moments. I suspect that all of this will settle out over time as the inflammation in his brain backs down via PANDAS treatment. In the meantime, I suppose you have a couple of options. You could minimize those situations for him, or you could work with him and the camp to try and give him some strategies for managing his distress and the resulting "acting out" until his ability to maintain -- and even enjoy himself -- in those settings returns.
  6. MomWithOCDSon

    Do symptoms change after puberty?

    Beenthere -- How interesting, the change in presentations! In our cases (both mine and my DS's), it's gone in the exact opposite direction! I was totally classically asymptomatic for strep as a kid, as was my DS: no fever, no sore throat, and no positive swab. But behavioral symptoms abounded for both of us, and strep titers for my DS were extremely high when finally tested (mine were never tested since no one had a clue about PANDAs when I was growing up). Now, as an adult, I get classic strep (high fever, horrid swollen throat), and though my DS has yet to "catch" strep in his fresh adult years, he's no longer behaviorally responsive to exposure to strep. I will, however, thanks to your story, keep a careful look-out as maybe his behaviors will be very different, too, should it come his way again. :-( That said, I'm CERTAIN you guys will get this under control again, and please don't beat yourself up about the time that it went unrealized. You can't know what you don't know and no one else knows, but now you're not only correcting course, but you're helping others be aware and potentially do the same. Lots of light coming your way as your DS heals...hopefully for the last time!
  7. MomWithOCDSon

    New here

    I believe Dr. Latimer is in the DC area and is well known for treating PANDAS. Though I also know her practice is quite busy and you may have to wait a while to be seen. Perhaps one of the preceding suggestions will be fruitful for you in the meantime, and you could also try the thread called "Doctors Who've Helped Us" among the Pinned Threads at the top of this PANDAS forum. Should you find you're put in the position of waiting some time for an opening appointment with one of the truly PANDAS-literate doctors, I would try an appeal to his regular pediatrician who's hopefully known him for some time and can therefore maybe see that the kid who's in front of him now isn't the same kid he's typically seen in his practice? In which case, getting a longer (30-day) prescription for an antibiotic which has been successful for combatting his strep in the past may cover the time gap until you can get in front of a truly knowledgeable provider. Good luck!
  8. MomWithOCDSon

    Disrespectful behavior

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

    time between strep and tics onset

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

    Extreme behavior

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

    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!
  12. MomWithOCDSon

    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.
  13. MomWithOCDSon

    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!
  14. MomWithOCDSon

    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?
  15. MomWithOCDSon

    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!
  16. MomWithOCDSon

    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.
  17. MomWithOCDSon

    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?
  18. MomWithOCDSon

    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!
  19. MomWithOCDSon

    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!
  20. MomWithOCDSon

    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.
  21. 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!
  22. MomWithOCDSon

    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!
  23. MomWithOCDSon

    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!
  24. 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.
  25. MomWithOCDSon

    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!
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