MomWithOCDSon

Has anyone had any experience with GI distress (bloating, mild pain as in inflammation) when taking either ubiquinol or selenium? I'm asking on behalf of myself (not my DS, for once) as I began taking these supplements a couple of months ago and, about 3 weeks in, began to experience these symptoms. They're not on the lists of potential side effects for either that I can find. But since I ceased taking them, these symptoms have subsided for me. Just wondering if I'm imagining a connection, or if something else may be up, or if anyone else has had a similar experience? I actually have a GI specialist appointment today, which I scheduled during the heat of my symptoms and decided to keep even once they subsided. Any thoughts/ideas appreciated. Thanks!

A positive response to steroids usually points to some inflammation which yes, could point to PANDAS/PANS.

Not to hijack the thread, but anyone know what "inspired" CHOP's oh-so-vocal stance against supplements? Was there an incident . . . or more than one . . . that can be related? I mean, really, when was the last time anyone heard of a verified supplement toxicity incident? I realize that many of us have had our kids respond less-well to certain supplements, but, to my knowledge anyway, none of us has managed to actually poison anyone!! This just sounds so unnecessary and fanatical!

We have never undergone any specific testing, but I would think a test for histamine levels wouldn't be an out-of-the-box request. We came to feel similarly about histamine's role in our DS via this information (similar to your link, but somewhat more succinctly laid out): http://www.nutritional-healing.com.au/content/articles-content.php?heading=Major%20Mental%20Illness%20Biochemical%20Subtypes We have found Pepcid to be a terrific addition to his meds, particularly during periods of high stress. We also use quercitin regularly. Good luck!

Qannie -- So sorry to hear what you and your son had to go through. Unfortunately, this was what I was afraid of with this particular institution. They tend to engage in sort of a "bait and switch" methodology whereby they lead you to believe they are PANDAS/PANS friendly/knowledgeable, only so they can get you in the door, dismiss that as a viable diagnosis, and point you toward the psych ward. They ought to be ashamed of themselves, but clearly they're not, since they engage in this over and over and over again. You know your son best of all, and you know what you know about what is and what is not "normal" for him. At least now, thanks to Children's testing, you know you don't have any other notable neurological issues or bizarre blood-reflected concerns. So now you can move forward. I, too, like 911RN's methodology and have found it to be beneficial in our experience with PPDED. There's something liberating in finally finding out, more or less definitively, that the prominent traditional medical institution in your area is full of bunk when it comes to something as complex and varied as PANDAS/PANS.

The Saving Sammy website has a state-by-state list of doctors who recognize and treat PANDAS/PANS, so that might be the most immediately helpful to you. Still, if possible, you might need to travel a little bit, though some (like Dr. T.) will also do telephone consults. http://www.savingsammy.net/providers.php Yes, I think generally decreasing the inflammation helps; however, keeping the inflammation down consistently requires addressing the cause of the inflammation . . . otherwise, you can't stay ahead of it sufficiently. Just also, short term memory issues are also a common component in PANDAS/PANS. It may be another result of inflammation, and/or it may be a reflection of the imbalance of glutamate in the brain, too. Have you done any reading on that? Since they're finding that extra-cellular glutamate may play a role in a variety of psych disorders including schizophrenia and Alzheimer's, addressing glutamate modulation may help you in a number of facets of what you're facing. Have any of your doctors ever suggested any of the glutamate-modulating drugs such as memantine or lamictal?

Our son had some attention issues, as well, particularly during the height of our PANDAS journey. However, as his primary behavior set was anxiety-related and OCD, his psychologist felt that any stimulant was a bad idea . . . that it would rev up the anxiety and OCD and make those issues much more difficult to control. We tried a non-stimulant ADD/ADHD med for a bit: Intuniv. Intuniv and Straterra -- both non-stimulants -- have been used by a number of PANDAS/PANS families. We thought it helped initially, but then the benefits seems to wane over time, so we ceased the medication. In the end, it seemed his ADD-type behaviors were more related to his anxiety than they were actual "freestanding" attention issues, and so when the anxiety was under better control, so was his ability to remain focused and pay attention. At present, we supplement with zinc, which seems to help in that regard without any side effects. I think if you search the PANDAS forum, you'll find some threads that discuss vyvnase.

Yes, I know it can be hard to find a doctor who takes PANDAS/PANS seriously, let alone knows how to treat it. Bactrim is one of those antibiotics that some families have had good responses to; our antibiotic of choice was Augmentin XR (extended release). I know you've posted on the PANDAS/PANS forum as well, and if you look on the pinned threads there at the top of that particular forum, you'll find a list of doctors who've helped many of us, all over the country. I believe you're going to try Dent, and you already know of Dr. T. For my son, the antibiotics finally "bumped" him out of the deepest, darkest place he'd fallen into over about a 4-month period, following another strep episode. We wound up keeping him on antibiotics for 2 full years, over which he continued to improve . . . sometimes more noticeably, and sometimes at a snail's pace . . . but still improving nonetheless. In trying to answer your question as honestly as I can, I would say that in our case, the antibiotics took away the worst of his psychological demons . . . they corrected his descent into total dysfunctionality. He'd become homebound, weepy, unable to sleep, unable to do anything without feeling distressed, including all the things he'd once enjoyed doing. He couldn't go to school, play, or even enjoy a passive activity like watching TV. Everything made him anxious, everything set him off. Within 48 hours of beginning antibiotics, he was able to rejoin some basic, small, everyday activities, like eating dinner with the family. Within a month of taking them, we were able to integrate him back into school. After about a year, he more or less had most of his "life" back, with friends, a returned sense of humor, etc. After two years, he was very close to being the same kid he'd been before the "great fall." However, in addition to the medical treatment, we never stopped the therapy, and he still needs and uses ERP and ACT (acceptance commitment therapy -- akin to the mindfulness you mentioned) almost daily to contend with certain situations and/or triggers for anxiety. So, my main theme in response to your question here on the OCD forum was that while effective PANDAS/PANS treatment will likely help you considerably in your fight against OCD, our experience has been that with a case which has gone untreated longer, and with an older person for whom some OCD-oriented behaviors have become more entrenched or perhaps even habitual, medical treatment alone is unlikely to completely reverse all the behavioral manifestations. And in our case, ongoing therapy has been an important tool in confronting the remaining OCD, including the intrusive thoughts. Given your history, I'm certain you're on the right track, going after a medical (auto-immune) basis underlying your psychological issues. And I'm also certain that effective medical treatment will greatly assist you in cornering these issues. I just also wanted to share what we have seen to be the continued value of therapy and therapeutic tools in daily life, supporting the brain's return to "normalcy" even after the medical treatment has been successfully undertaken. All the best!

Yes, intrusive thoughts and those around religious elements (scrupulosity) are a fairly common manifestation of OCD. Treating PANDAS/PANS has quelled/put into remission the underlying medical cause of the OCD by taming the auto-immune response and related inflammation in the blood brain barrier and the basal ganglia itself. Addressing that underlying medical condition goes a long way toward putting an end to the "merry-go-round" of OCD, including intrusive thoughts, so that your rational brain has a louder voice, a better chance for breaking through and taking command. That being said, I've read your post on the PANDAS forum, as well, and it seems that you, like my son, have been dealing with this for quite some time without entirely proper/effective diagnosis and/or treatment. My son was diagnosed with "regular OCD" for 6 years before we found the PANDAS piece and began to treat that medical disorder. As a result, he had developed a variety of coping behaviors and responses to the OCD that have, in some ways, become almost instinctual. So, as compared to a younger kid who's PANDAS diagnosis and treatment comes quickly, he doesn't "snap back" quite as quickly or completely without really working hard to "retrain his brain" away from the old OCD habits. Still today, his natural, habitual response to stress/anxiety is usually some form of OCD behavior, though he's getting better at recognizing that and facing it head on as he grows older and matures emotionally and mentally. Key to my son's work in beating back the OCD both through PANDAS treatment and afterward has been exposure response prevention (ERP) therapy. Do you work with a therapist in this regard? And is your family/loved ones fairly well versed in it, as well? Having the right kind of constructive support around you is invaluable.

All the best! When you're out the woods and get a chance, can you PM me that neurologist's name? As I mentioned earlier, we got nothing but the psych run-around from Children's a few years ago, so I'm pleased that they are seemingly getting onboard. Would love to know who there is a viable "go-to" person. Hugs to you and your kiddo!

Also wanted to add that loss of short-term memory is fairly frequently seen among PANDAS kids in flare. My son once likened himself to his grandpa (who had Alzheimers) because he couldn't remember what he'd eaten for a meal just an hour earlier. He would also lose track of steps in typical, multi-step tasks, such as showering (did I wash my hair already? I can't remember if I washed my hair! What about my arms? Did I wash them yet?). It seems to be an executive functioning thing, and might be part of the "glutamate storm" that accompanies some of the inflammation and an open blood brain barrier. It does abate eventually, but I think it contributes to them feeling "out of control" and can feed the anxiety, as well. Have you tried taurine as a supplement? It will likely not be instantaneous, but within a few days of taking it, our DS seemed to be able to hang on to thoughts and memories a bit longer . . . he could make it through a multi-step task like dressing or showering without losing track. Might be worth a try.

Qannie -- I would be wary of Children's; their head of infectious disease (to whom we were initially referred in our PANDAS journey) is a very vocal PANDAS/PANS naysayer, and you will likely be quite quickly shuffled off to the psychiatric wing. I'll admit that it has been 4 years, and perhaps other departments there (neurology or immunology) are more "with it" now; however, the same doctor remains head of the infectious disease department, so you definitely want to steer clear of that. Perhaps some other locals can weigh in here with more recent experiences than ours, or with referrals for specific doctors at Children's who will treat you and your child with respect.

There was some research provided here some time ago about how stress can contribute to the permeability of the blood brain barrier (BBB). And since it's a permeable BBB that can let things into the brain that don't belong there (like proteins and antibodies), it makes sense to me that stress could contribute to a flaring of behaviors. http://link.springer.com/chapter/10.1007%2F978-90-481-8553-5_9

So maybe we could get some of that "good," "skinny" gut bacteria we were talking about in another thread via this same delivery system?!?! Then I could slim down without the "old school" methodology of introducing said bacteria! :-) Much less urgent call to arms than for c-diff, of course, but has its own appeal, nonetheless!

You may have heard this before, but for the school's purposes, you might be best off giving them items/articles that address how to help your DS through whatever behavior sets may impact him in the academic environment, rather than attempting to school them on the medical side of the PANDAS experience. While the medical information tends to make their eyes glaze over, we've been most successful offering them practical information pertaining to DS's primary behavior set (in our case, OCD) and how that can be met in the classroom. There are lots of sources for that sort of info, and happy to point you in that direction if you can use them. Good luck!

Congrats! Way to go, both you and your DS!

I don't think clay has any probiotic qualities, but it can help "sweep out" the gut and get rid of detritus, etc. there. We've used both the liquid and the capsules. Liquid is a little thick and "grainy," but if you stir well and have him drink it down immediately therefore, you can hide a couple of tablespoons pretty well in a glass of juice. Without knowing what he's responded badly to in terms of probiotics, or what the response was, it's hard to suggest anything in particular. Have you tried some of the higher grade, more expensive ones like Klaire Labs or Florastor?

You go, Nicklemamma! "It only takes a spark to get a fire going . . . "

Quercitin has been very helpful to us. Have you ever tried/considered Pepcid? It helps block histamine in the gut, and it has been very, very helpful with our DS, particularly during allergy season. Good luck!

I'm with S&S. The worry about C-diff and similar issues is valid, but if your DS has shown no signs of that thus far, then I would think the chances of his developing it now are not especially strong either? I mean, what does the literature and/or your doctor say about why/when c-diff can develop . . . if it hasn't shown its face after 3 years of abx, how likely is it that it'll creep into the picture for the last 18 months of abx treatment? Even if you can't do "high-dose" probiotics, it sounds as though the Florastor (sach and yogurt organisms are doing the trick, and there's some evidence that "high-dose" probiotics aren't necessarily any more effective than the RIGHT probiotics in the RIGHT doses. We, in fact, found a "sweet spot" with our DS, and probiotic doses over and above that actually just resulted in additional gas, bloating and discomfort, so they didn't seem to be of benefit. My DS took Augmentin XR, 2,000 mg. daily, for about 2 years, at which point we began a slow wean. So I am all about the benefits of Augmentin and the benefits of a slow wean (fast never worked for us, either). Yes, it may be "playing with fire" in one respect, but most of what we do for our PANDAS/PANs kids could be considered pyromaniacal in one way or another, couldn't it? In the end, it becomes a question of quality of life, and you seem to have pretty much hit the nail on the head there; he's doing better, he's successful in school, he wants to remain so. So, I'd take a deep breath, check in with your gut, and follow it! You're a great mom and you've come quite a distance . . . maybe it's time to trust yourself! :-)

I'd be okay with that! I agree that over the years in which I've participated on the forum, there have been, as you've rightly noted, some glowing, almost hero-worship-ish posts about some providers. And perhaps those have inadvertently misled some folks. In the end, it's sort of caveat emptor, isn't it? I mean, we have to use our own powers of perception, of discretion, of discernment, of reading between the lines, of judging whether our sensibilities line up reasonably well with a particular providers', etc. And its unlikely that either the glowing testimonials or the bashing posts are going to line up entirely with our own experiences; it's much more likely to fall somewhere in the middle. It also probably depends largely upon the level of our child's/family's distress at that point in time and how successfully a particular provider is able to demonstrate an efficacious protocol that quells the resulting desperation. In the end, from the years of posts, presentations, PMs, etc., I've come to believe that each of the noted docs has his/her gifts, and each has his/her issues that may or may not turn out to be a "deal-breaker" for you, again, depending upon your needs and sensibilities. So if someone has and takes the time to comb through the post history here and then pose remaining questions via PM, they're likely to get a fairly balanced perspective overall. But these single threads can loom large, I think, especially for newer folks tuning in. Hence my concern. Thanks, Airial . . . I always enjoy your posts.

Ophelia, Qannie and others -- I can only speak for myself; I was never offended. I do truly empathize with everyone here who's had trouble getting treatment, who's had trouble feeling as though ANY doctor "gets it" or cares or has the time and resources to care "enough." This PANDAS/PANS thing stinks, and the scarcity of caregivers only exacerbates the problem. And I don't condone doctors who are unresponsive, unreachable, hopelessly disorganized, employ unprofessional staff, etc., either. But I guess I vote with my feet, as it were, and I'm usually pretty vocal (if you can imagine ;-) ) with the actual office, as well. I feel as though that's a better "bang for my buck" in the end. I don't want to "silence" anyone, and I'm not suggesting that providers with deficits should not be identified, either. But if we do it one-on-one, via PM and the like, there's less opportunity for "information" to morph into the realm of "gossip" or "venting," and personal experiences and impressions of a handful of unhappy people to "outshout" the other handful -- or potentially more -- whose experiences were far more positive. Again, despite the issues, this doctor and others who've faced their own share of criticisms have, in fact, helped many, many people, but those families are not necessarily active on the forum any longer. So we wind up with what I think is a somewhat "unbalanced" representation in the end. So I like tpotter's post/PM methodology. :-)

I get the frustration with a doctor who appears unresponsive, especially when you need him most. However . . . I feel the need to express an opinion. Can I encourage everyone to take their "gripes" about any particular doctor to PM, rather than in public? New folks who come on board and want some "inside scoop" on any doctor they're considering could do the same, so the necessary and appropriate information and support can still get where it needs to go . . . just more quietly. Dr. T. is one among a few doctors, Achilles heel and all, who has stuck his neck out repeatedly to try and help move the diagnosis and treatment of PANDAS forward. However imperfect his methods and communication, he has nonetheless helped many. But not unlike any number of practitioners in any number of fields, he is not the right fit for every body. But I'm guessing that many of us know that upon a first meeting with a doctor or a dentist or whatever . . . you walk into the office and the receptionist isn't friendly, or the environment feels "tired" or dated, or they've misplaced the lab work you faxed over in advance, or your dental x-rays have gone missing, or the doctor is running an hour behind schedule, or whatever. And something is a "red flag" for you, right off the bat. These things rarely occur in a vacuum; you can usually see some of it coming. But maybe, when it comes to docs who may help us in caring for our PANDAS kids, we're willing to overlook more of the things we'd typically expect from a professional environment/provider in exchange for hopefully finding someone who will help us set aside our "desperation." Because, as well all know, these guys are rare. In the end, though, it doesn't seem entirely fair to lambaste one of these providers after the fact, and in the public square. So I'd like to suggest that you express your dismay/disappointment directly to him and/or his office. PM another forum member with a similar experience so they know they're not alone. And, ultimately, if you feel that the cons outweigh the pros, and you cannot tolerate the "trade-off" regarding the shortcomings versus the support you get from any provider, it is probably time to move on and find someone who fits/serves your needs better. I know in the PANDAS world, that can be much easier said than done. But "bad-mouthing" a provider here doesn't, in the end, fix any problem or solve anyone's need; and it potentially drives a needed provider, however flawed, out of the fold. He'd be better for hearing directly from you how he or his office has let you down, so that he has a chance to make changes, if he's willing and able. And if he's not, well then, you have your answer there, as well. Sorry . . . don't mean to come off as the "school marm." I just think we need to be as constructive as possible, whenever possible. Everybody hang in there!

For gut cleaning, maybe bentonite clay? Worked well for us.<br /><br />What kind of issues has Danny had in the past, and which kind of probiotic?

Yes, it sounds like PANDAS. When there are SO many things running around in a comorbid mish-mash (OCD, defiance, ADHD, brain fog, impulsivity, etc.), PANDAS/PANS is certainly something to pursue, and pursue heavily. Despite what many psychs will tell you about how OCD, ADHD, etc. are frequently comorbid, they're missing the bigger picture, IMHO . . . that the comorbidity is due to an underlying medical condition, and not because it's "natural" or to be expected in some way. Prior to a fairly long course of treatment, my DS, too, suffered from fuzzy thinking, brain fog, forgetfulness, etc. He actually, at one point, compared himself to his grandpa (who had Alzheimer's), saying that he felt like grandpa because he couldn't remember anything, especially short-term. And yes, it made this one stellar student into a bit of a mess academically for a while. And also, yes, the anafranil could definitely be causing some issues; it actually drove my DS nuts, though he was given a prescription for this before we discovered PANDAS. I would get in touch with the prescribing doc and start weaning him down from his current dosage; it may be that this drug will not work for him at all, or it may be that a lower dose will continue to help the OCD a bit without causing the hyperactivity you're currently seeing. I can tell you that, at age 12, my DS sounds a lot like yours. So I truly do think you're on the right path with PANDAS/PANS.