MomWithOCDSon

I'm so sorry you're going through this, but when you ask the question, "Should I fight for this relationship?" honestly, all I can think, is that HE needs to decide to fight for it, and you can support him and care for him. But he needs to decide, maybe once and for all, that SOMETHING -- this relationship -- is more important than his OCD. Does he get any therapy or counseling for his OCD? Does he take any medications? If he's not currently in therapy, I would encourage him to seek some out, and perhaps the two of you could attend at least some sessions together, if he would allow that. The thing about OCD is that it can be so distressing, that loved ones tend to accommodate it, knowingly and unknowingly, and that just encourages it to stay present and gradually consume more and more of a person's everyday life. By attending some therapy sessions together, he will get some tools and techniques for pushing back at or "shrinking" the impact of the OCD in his life, and you will also get some tools and techniques for supporting him while not also inadvertently enabling the OCD. The insidious thing about OCD is that it will consume every molecule of air you give it, and then ask for more. And it will take more and more until the sufferer puts a firm stop to it, prioritizing "real life" over the constant nagging anxiety and perseverative thinking that OCD commands of its host. Therefore, one helpful technique can be to clearly separate the OCD from the person; support and love the person, while expressing a "no tolerance" policy for the OCD. Maybe you can try telling him that you care for him, that you want to support him, and that if he wants a chance at a meaningful, rich relationship, you're there for him, and that part of that relationship will need to be getting help for the OCD and not just trying to "gut it out" on his own because, clearly, that's not working. It's likely to be tough sledding, given his age and the fact that he's likely repeating a pattern that he's been living for quite some time. But I've seen it happen with many people...finally something is big enough, important enough, that they have the incentive and are able to do the work to reclaim their lives from OCD/anxiety. All the best to you.

MDMom -- My DS (now 19, but 20 within a couple of weeks) is in his 2nd year living on campus; he's attending a "regular" private institution about an hour from our home. He could have been a commuting student, but we really wanted him to have the on-campus experience, and we also felt that adding more stressful time and activities to his academic day, commuting back and forth, wasn't likely to enhance his chances of success. His institution is engineering-oriented, so they are somewhat familiar with "quirky" kids (Asperger's etc.) and have developed a mentorship program for underclassmen so that they're supported by a peer as they get integrated into school, and the Disability office willingly accepted my DS's high school IEP as evidence of his potentially needing some ongoing accommodations and made sure, through his first year, at least, that his professors were aware that he might need an alternative testing environment, etc. With the school you're considering being more specialized yet, I'm sure they have programs and procedures in place to support the kids; if you haven't already had a one-on-one appointment with someone who would be overseeing your son's on-campus experience, I would just request a meeting and go in with a list of questions. My DS is now in the second semester of his second year, plus he stayed on campus and took classes and worked on a research assistant grant through last summer. In short, he loves it and would prefer to be there with his friends than here at home. The only "accommodation" he's really maintained is the one which gives him a private dorm room; it's a safe haven he can go to at the end of a stressful day if need be, plus he doesn't have to contend with a roommate's germs or quirks. While my DS does not have the more complex, ongoing medical issues yours does, sending him away to school definitely felt like a gamble initially. And I can't lie...the first several weeks were a little tough for all of us. Just the adjustment, the changes, the getting outside his comfort zone to a degree and for a duration that hadn't been asked of him previously. But in the end, it was the best thing any of us has ever done for his growth, health and happiness. All the best to you and your son!

Heard this story on NPR today, and I'm encouraged by yet another link between neurological disorders, pathogens and immune response. IMHO, each and every "find" like this strengthens the rightful destiny of PANDAS/PANs as a DSMV-worthy illness that will, one day, no longer be referred to as either "controversial" or "rare." Scientists may have solved the mystery of nodding syndrome, a rare form of epilepsy that has disabled thousands of children in East Africa. The syndrome seems to be caused by the immune system's response to a parasitic worm, an international team reports in the journal Science Translational Medicine. And they think it's the same worm responsible for river blindness, an eye infection that's also found in East Africa. The finding means that current efforts to eliminate river blindness should also reduce nodding syndrome, says Avi Nath, an author of the study and chief of the section of infections of the nervous system at the National Institute of Neurological Disorders and Stroke. But the only clue that seemed to hold up was that affected children lived in areas where river blindness was common. This clue was puzzling, though, because even though nodding syndrome is a brain disease, the parasite that causes river blindness doesn't seem to infect the brain. After returning from Uganda, Nath decided to search for an explanation. "He pulled all of the lab together as a team and asked us to each investigate different components" of the syndrome, says Tory Johnson, an assistant professor of neurology at Johns Hopkins who was working for Nath at the time. She is also an author of the new study. Johnson's assignment was to see whether the body's own immune system might play a role. So she began screening blood samples from people with nodding syndrome. Other scientists had also looked for an immune response. But Johnson's search was much more extensive. "We looked at everything that was available," she says. Johnson had discovered that in people with nodding syndrome, the immune system was targeting a protein found in certain muscle cells. It looked as if the body was attacking itself. The question was whether the immune system's attack also included the brain. So Johnson started looking to see whether the targeted protein was in brain cells. "And lo and behold she found that yes, it was not only present in the brain, there were actually large amounts of it present in neurons," Nath says. "So the story really came together very nicely." The full story, the team's hypothesis, goes like this: When a person is infected with the river blindness parasite, the immune system begins sending antibodies to attack the invader. These antibodies identify their enemy by looking for a specific protein in the parasite's cells. Unfortunately, the target protein in the parasite looks a lot like a protein found in certain brain cells. So these brain cells become unintended casualties of the body's efforts to protect itself. The discovery shows why it's important to treat children soon after they are infected with the parasite, Nath says. That might prevent an immune response that attacks the brain. And it would mean that the parasite can't be spread from person to person by black flies. Because nodding syndrome appears to be the result of an immune response, Nath says, it may be possible to limit brain damage in some children by using drugs that tone down the immune system response. The finding also raises the possibility that parasites, or other infections, are causing epilepsy in the U.S. and other countries, Nath says. "We know there are a large number of immune-mediated epilepsies," Nath says. "But the underlying cause is not clear." And there are plenty of parasitic infections in the U.S. Pinworms, for example, infect millions of children each year. It's possible that some of these infections are leading to epilepsy, Johnson says. "We don't know because we haven't looked yet." http://www.npr.org/sections/goatsandsoda/2017/02/15/515424720/scientists-may-have-solved-the-mystery-of-nodding-syndrome

Yes, our insurance company is very rigid about refills and will only cover them pretty much immediately upon the heels of the previous prescription having run out. So if we order a refill too early, we can pick it up, but we have to pay for it out-of-pocket. In our case, our pharmacy knows us and is familiar with this "game" by the insurance companies, so they'll let us know: "You can pick this one up on Friday and it'll be covered."

Logan -- Like most things, OCD manifests along a scale, from maybe a slightly exaggerated "nagging thought" that you're having trouble shaking, to far more intrusive obsessions and compulsions that interfere with your daily functionality. You can find the Yale-Bocs test on-line, a quick questionnaire designed specifically to measure OCD and its severity. If you're on the fence, my guess is that you would likely score in the "sub-clinical" range, but some people have higher tolerances and don't realize how dramatic some of the presentations have become. https://psychology-tools.com/yale-brown-obsessive-compulsive-scale/ Best, Nancy

Amantadine is also a dopamine agonist, so is it possible her dopamine levels are also on the low side? Also, since glutathione is synthesized in the body from amino acids (glycine, l-glutamic acid and l-cysteine), maybe it would be possible to supplement with these amino acids up the chain, and they, in turn, could inspire her glutathione production? Unless, of course, there's something in her metabolism or methylation cycle which inhibits that production, even if the appropriate precursors are available in abundance? One precursor, cysteine, is difficult to get via food sources, so supplementing with that is one reason, I think, that some of us experience good results with a supplement like n-acetylcysteine (NAC) for both glutamate and dopamine regulation. I bet there's someone else here (LLM) who can give you some more studied feedback in this regard.

While I wouldn't recommend any of them for long-term use, we found (incidentally) that a number of the "heavy-hitter" anti-psychotics can have a significant tranquilizing impact. Stuff like Seroquel and Risperadol. Again, I personally don't care for them and wouldn't recommend them for any kind of ongoing use; however, I've seen for myself that they can provide some much needed relief and rest for the kid and the family on an occasional or short-term basis. Sometimes, desperate times call for desperate measures, especially when all the other interventions have proven to be of no avail.

SAR2011 -- I've sent you a PM.

Kimballot -- Great to hear from you, and so happy to hear about your DS's progress, successes, etc. You've worked so tirelessly to help him, and you should pour yourself an extra glass of bubbly this New Year's a toast yourself! As for the whole letting go of the apron strings things, I hear you! I've been doing the same for the last year or so . . . sending DS into his own doctors' appointments by himself, and then hoping he'll share with me the primary items, advice, etc. He usually does, but I really have to work hard at not prying beyond what he offers up. That's also translated into my turning over his supplement regimen to him entirely. I can see, now while he's home over the holidays, that some days he pops in a zinc and/or a B6, and other days he doesn't, which would have, at one point in time, freaked me out. But he seems to be doing well and managing himself and his life well, so I continue to work really hard at "dialing it back." Way easier said than done, though! Here's hoping you and yours have a fabulous New Year and 2017!

Have you tried any specific strain of probiotic? Sachrommyces boulardi (sach is particularly good against diarrhea. It is sold under the brand name Florastor, or you can get a less expensive Jarrow brand in many places or on-line. Good luck!

Yes, though it's difficult to separate cause and effect, definitively. Puberty + time + successful interventions (abx and supplements) + therapy, etc. I just know that our DS had the worst exacerbation of his life at 12, right as puberty began to rear its head.

Hormones are inflammatory. If he's going through puberty, that could be part of the picture. I feel certain it was in our case.

Laurac -- As your DS has autism, do you have access to a DAN! doctor? Some of them are familiar with PANDAS/PANs and know how to treat. Otherwise, you might want to consult the list of doctors others here have found to be helpful across the country and see if there's someone in your area you can readily get to. Notwithstanding that, many families have traveled significant distances to see the few specialists in the area of PANDAS/PANs, but I know that's not always feasible. The cold which preceded your DS's most recent decline sounds to me like it might be a myco p incitement of the PANDAS/PANs, so getting those test results might be indicative. Did you get a full immune panel (IgA, IgG, etc.)? I think -- but I'm not sure and someone else here may be able to tell you more accurately -- that an IgG number out of range can be indicative of a myco p infection. http://latitudes.org/forums/index.php?showtopic=5023 Our first doctor that we convinced to order the blood tests for us also threw out the anti-d-nase b test, saying it was redundant with the ASO -- which, of course, it isn't. That said, I don't believe that an ASO of only 100 would be out of range, but the lab's "normal" range should appear somewhere on the test results. Have any of his general medications (if he takes any) changed recently? There are a number of them that can drive appetite, though you would think that the doctor(s) would have notified you of that. It's also possible, isn't it, that his appetite is tied to an anxiety behavior, just as some "normal" folks stress eat? Something from which he derives more pleasure than anxiety? Hopefully some others will chime in, but you're likely to get a suggestion to test for Lyme and co-infections, especially if you live in an area, or your DS participates in activities that would make him prone to tick bites. You might also see if you can get the Cunningham test, a diagnostic panel specific to PANDAs designed by Dr. Madeline Cunningham. Unfortunately, I'm not certain how you go about order the test packet, and I don't think most standard labs have it yet, but someone else here can likely help you with that, or you could try Googling that. Hang in there!

Like LLM, I too, will say the remission is possible. I also think, however, that it looks different in most cases, too, and is very individual. In our case, my DS had been diagnosed with OCD and had suffered from various anxiety issues for nearly six years before we found PANDAs and were successful in getting medical intervention (abx) for it. So, his brain, during some key developmental stages, had been wiring itself to cope with all that anxiety, compulsions and obsessions for a long time before we started really beating back at the strep and inflammation that had thrown things askew to begin with. So, maybe because of that protracted period before intervention or because of his age at diagnosis (12), he's recovered, but still somewhat anxiety prone. He no longer has violent behavioral responses to strep exposure or allergens, he no longer "flips out" and finds things unmanageable. He's happy and physically and mentally healthy, doing well in college and loving the social side of it all like he never really could in junior high and even the early years of high school, but he's not 100% anxiety-free, nor am I sure he ever will be. Folks talk about getting back to "100%," and I'm sure that's achievable in many cases. It may still yet be achievable for my DS, but maybe it's just going to take a while longer for him to completely rewire all those coping mechanisms; he's certainly gained leaps and bounds in the last couple of years, that's for sure! So, all that's to say, I hope you can celebrate your recovery, your good times, your returning happiness and functionality, even if sustaining it just yet seems like something of a delicate balance. Enjoy every minute you can, and congratulate yourself on every gain. If my DS is any measure, things just continue to get better and better as the body heals, the brain heals, and the psyche finds other focal points (school, social life, etc.) for all that mental energy that PANDAs and its behavior set used to consume. All the best to you.

My gosh! This is bad news, for sure! Hope you guys get some answers soon. For what it's worth, there were times during my DS's PANDAs that, for whatever reason, the Augmentin 875 was more readily available than was the XR, and in the stretches during which he took it (a month at a time here or there), we didn't see any signs that he was regressing. It's my understanding that the XR is made into a tablet with cellulose, which is the "extended release" component as it breaks down more slowly in the digestive system and thus releases the active ingredients more slowly than does a non-extended release formulation. That's why, if you take digestive enzymes, you're supposed to avoid any containing cellulase because that basically negates the extended release properties of the cellulose in the XR tablet. Maybe a compounding pharmacy could still mix something like that up?

Another neat summation via Mental Floss: http://mentalfloss.com/article/65710/9-nervy-facts-about-vagus-nerve

Louisa -- I don't have a specific recommendation, but if no one gets back to you with a name or two, you might try reaching out to some of the folks listed with the International Obsessive Compulsive Foundation on their web "Find Help" page: https://iocdf.org/find-help/ The psych we found via this resource happens to be both OCD and ASD-savvy, but she's here in the Midwest. Still, I think the IOCDF is a good starting point. I would just start with some calls and ask each therapist/psych specifically about their experience with ASD in addition to anxiety disorders. I might also suggest that you could possibly reach out to Dr. Eric Storch of the Rogers pediatric OCD program in Florida? https://www.rogershospital.org/doctors/eric-storch-phd I attended a session at an IOCDF conference a few years ago, aimed at practitioners, that Dr. Storch led regarding the treatment of OCD in ASD individuals. He knows his stuff, and he has been, in the past anyway, pretty accessible via phone and/or Skype. I don't know that he would be ideal for ongoing treatment even if he would engage in Skype appointments on a regular basis, but perhaps he knows of a colleague in your area that would have a skill set in this particular field? All the best!

GinaT -- I just PMed you. Nancy

Just another quick thing . . . has your DD been given any genetic testing by the psych or specific to the psych treatment plan? Something like GenoMind? These genetic tests are specific to how genetics impact one's ability to effectively utilize certain psych meds, as well as ones to avoid because they are contraindicated due to different mutations, etc. Anyway, something like that might help the psych narrow down more specifically appropriate treatments for her. We did not have the testing for our DS as his treatment was prior to this sort of testing being readily available, and our psych lucked into effective treatment without the help of that testing. But I do know that Abilify did not help him; we tried it for a short time, and he had a contrary reaction to it. It was prescribed for him by a previous psych, and when we began seeing the psych who's been very helpful since and really effective for him, she told us that Abilify was the wrong thing for him. Best

So sorry you're going through this. While some of the symptoms (hearing voices, especially) are outside of our experience and not one I've heard/read of being common to PANDAS or PANs, your DD's positive response to the brain anti-inflammatory (Diomox) -- even if it doesn't quell ALL of the symptoms/behaviors -- suggests to me that there is some sort of brain inflammation (encephalitis) potentially at play here. You've said you've taken her everywhere and gotten no help, but I'm not sure who you've seen and/or what specialists you've tried. Have you seen a neurologist? Had a full PET-scan to identify any abnormal swelling in various parts of the brain? Wish I had more to offer; perhaps someone else here will.

Tu4four -- I am so sorry about what you've been going through and where you are now. It truly is heartbreaking. Some of your DD's behaviors and issues sound very familiar to me, and others less so, as my DS's deepest, darkest part of his journey happened at 12 through his early teens, and that is definitely very challenging! I don't want to add to your despair by suggesting yet more avenues/considerations, but just in the event something in our experience has slipped past your care team, etc. . . . Early on, my DS, too, had diagnoses such as ASD, Aspergers, OCD, and PDD-NOS; he could be defiant, but not really self-harming. Fortunately, he responded well to abx, but that was only part of the picture for us. He really needed that psychiatric component -- both meds and therapy -- to re-achieve the potential the PANDAs tried to steal from him. One thing that really helped him turn the corner was the addition of Lamictal to his medications; is this something any of your doctors have suggested trying? Our psych has said that it is useful with people on the "autism spectrum," and we found that it took a lot of the heavy-duty emotional lability out of the equation; it made it possible for him to face challenges (mostly OCD-based) with some maturity and perspective, instead of melting down over things or blasting off with a temper response. Lamictal is technically an anti-seizure medication which is supposed to be a glutamate modulator, so our psych prescribed it for an "off-label" purpose. I know I'm not there, in the middle of it, and I may be misjudging it from your telling, but I know at times our DS had outbursts out of pure, raw anxiety. He felt so out of control, felt he had so little that he could enjoy about his life because the anxiety and OCD infiltrated everything for a while -- sometimes especially those activities he had previously really enjoyed, like school, video games, etc. -- that he acted out and exploded over things, seemingly trying to "ruin them in advance," before the anxiety could ruin it for him. I know that wouldn't necessarily explain ALL of your DD's behavior and choices, but it might be behind some of it. The hypersexuality, I think, may in part be her sort of doing an obsessive-compulsive thing of "poking at a wound to see if it still hurts." Given her upbringing, she knows that you would disapprove of this sexual activity, and despite how it appears, I'm sure she would prefer to please you and have your support. But she's sort of obsessively compelled to behave in an opposite manner. It's another self-harming thing, in a way, especially given as OCD has a very real scrupulosity component whereby sufferers can be overwhelmed by a need to be the most moral, the most ethical, the most "Godly" . . . She's poking the bear in a very intense way, there. With respect to the therapeutic day school . . . I'm pretty sure that if you were to enroll your DD in the local public school district and provide them with the testing, etc. that demonstrates her issues are more than what they can deal with on that campus, the district would have to bear the costs of a "suitable alternative learning environment." Now, maybe that's a long way to go around your elbow to get to your thumb in terms of funding her education. And there might be some components of the law that would be problematic in terms of her not having been enrolled in the district previously or something like that, but you might look into that. I know when my DS was at his worst and the junior high felt that they couldn't handle him on-site, the district confirmed that if we had to go elsewhere, it would be on the district's dime (didn't wind up having to do that after all, as we home-schooled him for about 4 months while we got treatment, and then we were able to slowly integrate him back into his regular school). I am thinking of you and wishing you the best as you consider these new avenues.

ShowMe -- I didn't originally respond to your post because I don't personally suffer from clinical-level OCD; it's my son who has the direct "OCD experience." So, given the esoteric nature of what you're experiencing and attempting to communicate, I didn't feel as though I have a lot to contribute. I'm fairly certain that my son has had some similar mental experiences to what you've described, but he hasn't felt the need to analyze and/or articulate it to the extent you've felt compelled to. To him -- to me -- this is just another aspect of the OCD and its "cousin," attention-deficit issues, that he frequently deals with. Like with most obsessive thinking components of OCD, his response is to push through, push aside, keep moving and continue to work at tuning out the "noise" such obsessive thoughts can bring to the table in favor of things he wants/needs to focus on at any given time. For what seem like obvious reasons, I think this is more easily done when he's got something in front of him that truly interests him, and more difficult when whatever task is in the forefront is less engaging, less interesting, less "up his alley." Sorry no one else has responded, and that I have little to contribute myself. Not exclusively, but to a large extent, these ACN forums are visited most frequently by parents of kids with these mental challenges, rather than older adolescents or adults actually suffering from the conditions themselves and posting their experiences. You may have more active exchanges on some of the other OCD support forums such as OCDSupport.org, etc. All the best.

Unfortunately, I don't think that we know at this point that there is any such thing as the "best" antibiotic for PANDAs, or even strep, for that matter, particularly as different strains of strep react differently to antibiotics. In our case, my DS did take Augmentin, and he did respond quickly in terms of behavioral improvements. But that didn't mean full recovery/healing was quick as, in his case, it was a 2+ year process. Regarding probiotics, I've neither read nor heard that probiotics overall are bad for PANDAs kids; rather, some doctors recommend that you not give PANDAs kids probiotic strains that include streptococcus thermopolis as it is a strep strain, and some kids have unfavorable behavioral responses to other strains, most notably sachrommyces boulardi (or "sach b," well-known brand name, Florastor). I can't speak to GutPro specifically, but hopefully some other folks here can. We successfully used a multi-strain probiotic throughout antibiotic therapy, as well as lactobacillus gg (Culturelle) which has been studied for being helpful with respect to fighting depression. All the best!

Wow. So sorry you're going through this. If you can travel by automobile south, I know that there are some PANDAS specialists in the Northern California area (Stanford, etc.). Hopefully, someone more geographically knowledgeable on that front will speak up soon. In the meantime, you could check the "Doctors Who've Helped Us" thread in the Pinned threads at the top of this PANDAs forum: http://latitudes.org/forums/index.php?showtopic=5023 As for why Augmentin may have helped her, even if Cunningham does not confirm PANDAS/PANs: possibly, 1) she DOES have PANDAS/PANs, and the Augmentin is at least partially successful in quelling the autoimmune response; 2) Augmentin is thought to have other properties, thanks in part to its clavulanic acid component, such as anti-inflammatory, glutamate-modulatory, anti-depressant, etc. My DS took Augmentin XR for nearly 2 years because it helped him the whole while, and every time we tried to reduce or cease it, he would slide back into previously abandoned behaviors. I would not hold out too much hope for the neurologist or the infectious disease doc; in our area, at least, these folks err to the side of DSM and "conventional" response and decide that PANDAs/PANs remains a "controversial" and/or internet-based, "rare" (if existent at all) phenomenon that your child couldn't possibly have. So you're the crazed parent who just can't accept that your child has a purely psychological disorder. There is the possibility, however, that you'll get lucky with someone who's more intellectually curious. The whole C-Diff thing is tough and very unfortunate; it is, in fact, one of the primary reasons that leaders in the PANDAs research and practice fields do not advocate for long-term abx use for the disorder (even though many of us have used long-term abx successfully). Given your DD's tendency toward C-Diff, you might find that one of the other, non- or shorter-term abx interventions to be a better answer: IVIG, plasmapheresis, and/or steroids. As for Florastor (saccharomyces boulardi), if you run a search for that particular probiotic here on the forum, you'll find a subset of kids who respond unfavorably to it. Since you're doing Flagyl, it might be worth trying taking her off the Florastor and see if her behavior improves at all? And finally, though I think you're absolutely right to seek out medical intervention for your DD, I would also consider finding a good CBT/ERP therapist to start helping her (and your family) push back some therapeutically at the OCD. While it may be difficult for your DD to participate fully in the therapy until her health takes a more positive turn, it will likely give you some very valuable tools for managing some of the behaviors during the healing process. All the best!

OMG, Mayzoo! I'm so sorry! I don't have any specific IVIG experience or advice to offer, but I just wanted to offer my support in the face of this drastic change in your insurance situation. It stinks, BUT . . . just because he says he's going to repeal Obamacare his first day in office doesn't mean he actually can or will. Are they really just going to throw all of those people off the insurance rolls?!?! How is that in any way politically feasible? At a minimum, you'd think there would have to be a transition period or something, especially as the ACA is supposed to be replaced with something, not altogether chucked. Hang in there!