MomWithOCDSon

Rogers has a facility in Oconomowoc, Wisconsin. The main difference that I'm aware of is that at that particular facility, it is solidly inpatient, and the patient/kid and the parents do not participate daily in co-sessions, nor do you necessarily get to see your kid daily, particularly at that age (14). Unless the program has changed since we looked into it several years ago. Meanwhile, Rothman, as I understand it, is an outpatient program so that your kid stays with you at night rather than in an actual facility, and there is also, I believe, more joint kid-parent programming, as well. But that might be geared more toward younger children, rather than adolescents. Hopefully, some others will chime in soon with actual experiences. In the meantime, could you book a double or back-to-back appointments with your therapist so that your son could get in a solid 1.5 hours at a turn, uninterrupted? Good luck!

These (glutamate, histamine, etc.) are BIG topics in mental health, generally, given as these are neurotransmitters that impact mood, executive functioning, etc. And there are certain supplements that can help/hinder, depending upon what a person's natural tendencies are in terms of high levels, low levels, general dysregulation, etc. There are multiple threads here on the forum; you can search for a key word (histamine, etc.) and find discussions, research, etc. Also feel free to PM me with an email address, and I can share some of the research I've collected over the years on these topics. Good luck!

So you can't get him out of the house to take him to a doctor for PANDAS assessment, blood tests, etc.? I might suggest if there's any possibility you could sedate him enough (risperadol, Seroquel, valium) to put him in the car and get him to a PANDAS appointment? I am NOT, by a long shot, anti-psych med. We found a combination of low-dose psych meds, abx, supplements and therapy to be the most effective mix for full-scale healing of our DS. However, I would have concerns about an inpatient psychiatric program: that they will not be open to PANDAS diagnosis and/or treatment; that they will more permanently sedate your DS to make him more compliant but not actually get to the root of the drivers of anxiety and school refusal; that his functionality will continue to lag because those psych meds, and the rates at which some doctors change doses or medications altogether, are not entirely well-understood and/or documented, and your DS may suffer impacts that he doesn't have the capacity for fully articulating. It may be obvious, but we had our DS in a hospital partial inpatient program for a short period before we got PANDAS treatment and after he'd become so dysfunctional that school was not an option; he spent the days at the hospital, engaging in therapy sessions and medication management, but came home and spent nights at home with us. Sorry to say, it was nothing short of disastrous. They continually changed his meds, added to them, increased dosages, etc. until his poor brain was just flooded with crap. If I'd known then what I know now . . . . I don't mean to encourage you to NOT seek help for your DS, particularly if he's threatening self-harm. I just think it's worth seeing if there's an alternative, given as you know something about PANDAS, you appear to have access to a PANDAS-savvy physician, and your DS seems to be displaying some pretty clear PANDAS behaviors, IMHO. If you've got to figure out a way to admit him to the hospital and thus get him out of the house and into the hospital, perhaps you could figure it for a PANDAS doc appointment instead? Hang in there!

Sachromyces boulardi (sach b -- same flora in Florastor, but we buy the Jarrow brand at Vitamin Shoppe as it's more affordable) and Culturelle (lactobillus GG)

Wombat -- I may be misunderstanding your post, but I don't believe we generally reference OCD symptoms as "saw-toothed" in and of themselves . . . rather, in our experience, it was the healing once we got treatment (abx) that tended to follow something of a "saw-toothed" pattern. In other words, my DS would have a series of good days during which his OCD and other PANDAS behaviors would improve, , and then he would have a bad day or a couple of bad days during which a behavior we thought he'd permanently dismissed snuck back in. Or he'd hit a plateau and hang there for a day or two before more tangible improvements followed a few days later. When it comes to OCD specifically, the term I've heard more typically from mental health professionals and even other families is "wax and wane," meaning like the moon, folks go through a period during which it tends to be disruptive and a period during which the OCD appears to subside. Personally, I think that "waxing and waning" is in direct response to an immunological event of some sort, but only other PANDAS folks are willing to sign on to that, generally speaking. I can't comment on Lyme or steroids since we haven't dealt with that ourselves.

I sent you a message; hopefully you got/will get a notification.

Ladymavs -- While I think that scrupulosity, like many forms of OCD, can become sort of a habitual, entrenched response to anxiety which may require behavioral methods (CBT, etc.) for helping put the scrupulosity in its place, I would also wonder if your DS might not have some ongoing auto-immune issues behind this behavior. If he still responds to abx, that would be a clue, I think, that there's either an infection or ongoing inflammation, or potentially both, that would best be dealt with medically. I would encourage you, at the same time, to continue to seek some therapeutic resources as well, such as the therapist you mentioned. Tools and strategies that he can provide your DS and you will be helpful in helping maintain a quality of life and functionality while he continues medical treatment. Good luck!

Your list? Is it posted somewhere else? At any rate, I'm not certain that anyone could tell you definitively what you might be able to reduce or remove from your DD's schedule, as it tends to be very individual. When my DS was going through this, we just started trying to reduce one supplement at a time, slowly; if there were no significant negative impacts after a couple of weeks, we would move forward on the assumption that he was getting enough of the reduced supplement via food sources, etc., and/or that he didn't need that particular supplementation any longer or at the previous level any longer. Otherwise, do you have an integrative doctor or a naturopath or some other professional that might be able to help you assess these items?

No, I never sent any doctor any money. Actually, my point was that I'm told that doctors consult one another frequently as part of their regular, professional course of business. So I thought that maybe if I gave our doctor some other professional resources that she could consult that she would consider to be "on par" with her own credentials, she might do so in order to become better informed about the condition, etc. I didn't really have any expectation that she and another doctor would consult specifically about my kid . . . just consult with someone with more experience regarding a given medical condition that was lesser known to her.

So sorry your resources appear to be so thin . . . Here in the states, we also have some infectious disease (ID) doctors to whom some folks have been referred. They're not always helpful . . . frequently "pooh-pooh" PANDAS and PANS, but I do know some folks who've found some assistance through that tract. Would your GP perhaps be willing to consult via Skype or something a PANDAS-savvy doc here in the states? I don't know that our pediatrician ever availed herself of it, but I gave her the full contact information for a couple of PANDAS-knowledgeable docs thinking that perhaps some consultation between professional colleagues, without my participation, would somehow feel more legitimate to her than would my passing on web site materials, etc. Also, I was able to get our first round of abx by literally taking a copy of "Saving Sammy" to our pediatrician and begging for her help. When she said that she was willing to help given as she'd taken an oath to "do no harm" and she didn't believe a course of abx would be harmful to my DS, she followed that with, "But I have no idea where to begin. I don't have a protocol for this!" So I opened up the copy of "Saving Sammy" and showed her Sammy's medication, and she agreed to try that. Now that I think it through, I'm betting she DID follow up and contact one of the other doctors for whom I gave her the information because she's generally a fairly cautious caregiver. (At that point, I didn't know about as many professionals treating kids with the condition as I do now, so I'd given her Sammy's doctor's info.) No question, this is an expensive, time-consuming and frequently frustrating path. I'm wishing you the best and some substantial relief soon!

Lydiasmum -- During his PANDAS episode our DS had the same speech issues: repeating words over and over again, trying to get a thought out, losing his train of thought altogether, repeating a whole phrase over and over again. And he frequently paced while displaying these verbal patterns, as well. We called him "kinetic," because the movement seemed to help him somehow move the words forward, though not always. This was one of the behaviors that hung on longer than some of the others, for whatever reason, and beyond these extended verbal "tics," along with one strange leg-dragging tic that was dispensed with permanently pretty early in his healing, our DS's PANDAs presentation was solely OCD. I'm not sure what's behind it except that it is some illustration of the brain inflammation. Even though your DD hasn't had any notable illness lately, almost any immune event (virus, allergies) could potentially drive more inflammation, and perhaps that's behind this ramp-up? My DS's speech patterns slowly returned to normal over time, without speech therapy or other speech-specific interventions. The improvement seemed to naturally follow the improvement of his brain function and organization overall; as his thoughts got less "fuzzy" and more organized, so did his speech. Have you tried different strains of probiotics to see if there might be one that would agree with her? There was another thread on here several months ago regarding different probiotic strains and what was thought to work best depending on some phenotypes, etc. If I can dig it up, I'll drop you a link. Hang in there!

Since allergies are technically an "immune event," i.e., trigger an immune response, I definitely think they could contribute to the tics, if not be solely responsible for them. Just a note about the supplements; I would scrap the B-Complex because I don't know that you want the B-12. Someone else here can perhaps add to or correct me on this, but I believe that B-12 encourages histamine production which would be counter-active to all the allergy control interventions you're undertaking. My DS has numerous environmental allergies (dust, mold, pollen, cats), and we found that he responds best to B-6 without any B-12. Good luck to you! I'm sure some others will chime in here soon!

I think the concern for some (therapists, teachers and parents alike) with respect to homebound instruction is the tendency it can have to support "school refusal" when it's time to go back into the classroom. Given the opportunity to stay home in a "safe" place for a period of time, some kids get more obstinate and anxious about returning to an environment that can be, at times, overwhelming and chaotic. I would think that is perhaps more likely the case for kids on the autism spectrum than those who are not. Perhaps that's why the psychologist is encouraging a change of placement, rather than homebound. That being said, I think you know your kid best and should consider the options and then advocate accordingly. If there are alternatives available in your area that rival the current setting in terms of location, educational options for your son, challenging him in those subject in which he excels while also supporting him improving in those areas where he might come up a little sub-grade-level, then maybe that's worth considering. But if the school he currently attends (albeit sparingly at present) has suited him well when healthy, then you might consider advocating for maintaining the status quo if possible, with homebound serving as the alternative when he's unable to attend on a regular basis. I don't know if this is equivalent at all, but my DS is "quirky" and was, particularly at your DS's age, highly socially awkward. In the depths of his PANDAS one of the psychs we saw gave him an Asperger's diagnosis, and the testing he went through for his IEP showed "significant processing differences" between his verbal and spacial scores, though the school psychologist did not feel he had the full body of traits that qualified him for being given an Asperger's or autism "label." Both before and after his PANDAS dx, he was in the school's gifted program and particularly excelled in math and science, though his reading scores were very high, as well. During the worst of his PANDAs, he had trouble doing any schoolwork, math or otherwise; it took constant coaching, constant encouragement, lots of breaks, reduced work volume, etc. But he eventually came out the other side and, as I mentioned previously, was able to return to school full-time. Today he's a college freshman (with sophomore-level credits, thanks to AP classes and test scores), and though he started his college career still significantly socially awkward, he has now "found his tribe" at school and, for the first time in his life, has a large circle of friends that he hangs with, values, shares, enjoys, etc. And after his challenging high school career, the academics thus far have proved to be almost easy for him. Long way of saying . . . I see some of my DS in yours, and if mine is any example, yours can and will get through this and potentially thrive. Hang in there and follow your gut. The doctors and psychs and therapists are all knowledgeable and well-meaning, but you know your kid best!

Jennapow -- We did strictly homebound for almost 3 months when our DS was at his worst; as he started to improve, we worked out a plan with the school (within his IEP) which allowed him to return to school gradually, at a pace that matched his capability and endurance in terms of managing both his health and his behavior. He literally returned one class at a time, and the first class he returned to was his resource period, during which his teachers from his other classes would come and check in with him, he could take quizzes or ask questions about various assignments. Then, every few weeks, as he continued to improve, we would add one additional class period on, and then another, etc., until, after about three months, he was back in school for the entire day. I like DCMom's idea for ongoing management (fifth day out = homebound instruction period). Neither we nor any of our IEP supporters thought of that at the time. But luckily, he managed well once he was back in; we just needed a "mental health day" here and there to give him a break. All the best!

I don't know if this has any bearing on your situation, but below is a link to an older thread and some forum discussion on this topic, as well as an excerpt from a paper by Dr. Tanya Murphy on this topic. http://latitudes.org/forums/index.php?showtopic=21349&hl=%2Bneed+%2Bhelp+%2Bunderstanding

We saw some of that rapid cycling behavior in our DS when he was your son's age. He, too, had lots of sinus/upper respiratory issues leading up and into a PANDAS dx and treatment. I don't really have any explanation except to offer the concept that, maybe, it's like there's a glass for immune response or "maintaining" behavior, or both, and that glass just gets filled up within the "normal" time frame you're seeing, and then it spills over and your DS can't successfully combat the onslaught any longer? With the sinus, sniffling, etc. issues, you might want to look into whether or not myco p or strep may have "colonized" in his sinuses; some families have found almost cyst-like bacterial colonies in their kids' sinuses. Sometimes protected by biofilms, that bacteria can survive and induce an immune response for a protracted period. You're headed toward some very highly-qualified medical providers, so hopefully they'll help you get to the root of this. Just a couple of things to maybe pose to them, if they don't offer them up themselves. Good luck!

Thanks LLM. And Mike, sorry about the misinformation regarding Azith's half-life; it's been a while since we've been on the abx train, and I have clearly confused azith for something else. LLM, I continue to wonder about the whole NAC thing . . . I know you've mentioned adverse reactions before, and as I recall, you're not the only one. But for us, it's been nothing but good, and DS's blood tests (including liver enzyme levels) always come back normal, despite having been taking NAC for more than 4 years now. Do you think it's part of the methylation puzzle, or do you know any other sort of "comorbidity" (not sure that's the correct word) in terms of supplements or something that might, consumed along with NAC, contribute to adverse or positive reactions? I seem to recall someone mentioning something about excess ammonia or something in the system with NAC, and so making sure to pair it with sufficient levels of Vitamin C to help "wash the ammonia out" or something like that? Does that make any sense to you? Sorry for hijacking, Mike!

Mike -- I think, not dissimilar from you, my DS was diagnosed with "regular OCD" when he was 6. He'd had one ear infection after another in his toddler years, followed by allergies and lots of upper respiratory issues during grade school. But even though we knew he'd been exposed to strep (form letters sent home from his school, and his dad or I would come down with a class case of strep throat within a week or so of that notification), he NEVER "caught" strep in the classic sense. After the OCD diagnosis, I did some research and found out about PANDAS, but I couldn't get any of our doctors to take it seriously, especially once every culture I managed to talk them into came back negative! So we got him into therapy first, and then when the OCD revved up substantially at about age 7-1/2 (following another "strep letter"), and I still couldn't get anyone to acknowledge PANDAS in him as perhaps a strep carrier, even though he never seemed to suffer from the bacteria physically himself, we submitted to a low-dose SSRI (Lexapro). Things went along relatively smoothly for the next few years, with just some minor bump of increased anxiety or OCD. But then when he hit age 12 (again, within weeks of our having received a "strep letter" from the school), he totally lost it, and the decline this time was rapid and unstoppable. Within a couple of months, he was nothing but a puddle on the floor of his bedroom; he couldn't sleep, couldn't eat, couldn't shower, couldn't go to school, couldn't do school work, couldn't play, couldn't watch TV, because EVERYTHING made him anxious! An absolute non-functional basket case. And yet, there was no sign of any physical illness, beyond the allergies and general congestion he'd always battled. The doctors still scoffed at PANDAS, so instead they started messing around with his meds: changing them, increasing them, adding to them. Nothing helped, and he just kept unraveling. After about 6 months of this decline, we finally sent him to a partial out-patient program (he'd go all day and then come home at night) at a local hospital where they were supposed to provide him with intensive therapy and medication management. While he was there one day, my DH and I were browsing in a bookstore and I came across "Saving Sammy." I read it in just a few hours and emailed the author, Beth Maloney, about how many things her son, Sammy, and my DS seemed to have in common. She wrote back, encouraging me to order the blood (titer) tests since, like Sammy, he was classically asymptomatic for the strep, it seemed. I called the attending psychiatrist at the out-patient program and told her I wanted the blood tests. She balked but finally ordered them. When they came back the next day with highly elevated strep titers, I asked her to order abx for treatment. But she wouldn't. So, I went to the bookstore and bought two more copies of "Saving Sammy" and took one to DS's psychiatrist and the other to his pediatrician; the pediatrician's office squeezed me in to see her for a few minutes, and I gave her a synopsis of Sammy's story and how Augmentin XR helped him so dramatically, and I reminded her how "normal" my DS had been when he was younger, and how this new mess of a boy wasn't who he was . . . that there was something afoot here, and he needed her help. She acquiesced and ordered the Augmentin XR from our local pharmacy, and I picked it up that night. Mike, within 48 hours, he was a different kid. Now, mind you, he was not nearly as functional as you appear to be. He couldn't have posted a note on a forum or probably typed a single sentence at the time, so ANYTHING was a step in the right direction. But by the next night (after two doses of the XR), he was able to come out of his room and come eat dinner at the dinner table with us for the first time in 3 months. It was nothing short of miraculous. The improvements kept coming, though they became more subtle over time. But by keeping a journal, we were able to better track the things he'd not been able to do for months but was now going back to, as well as the unwanted behaviors/thoughts that he was starting to let go of for the first time in many months. So, long way of saying, given the ear infections and all the upper respiratory stuff he suffered from about age 2.5, and he didn't get abx (other than a 10-day dose her or there for an ear infection, etc.) until he was 12, that was close to 10 years of likely suffering PANDAS without getting treatment for anything other than the psychiatric symptoms. He felt noticeably better within 48 hours, and he got slowly better over the next 2 years. For a while during that period, we would think the abx had completed their positive impact and we would take him off, only to see the old unwanted behaviors creep back in until we put him back on. After about 22 months on full abx, we started weaning him off slowly, just stepping the dose down gradually over several months until it was gone completely. That time, he was able to "hold." He still gets anxious from time to time and maintains some OCD "habits" (mostly related to contamination), and we've continued a low-dose SSRI (now Zoloft) and some supplements (including NAC) that seem to help him, but he is fully functional and able to operate in the world as most 18-year-olds can. He's a freshman in college this year and thus far -- knock on wood -- doing very well and loving it. So, in our experience, having contended with OCD for several years prior to getting PANDAS treatment, we think he's likely to always have some OCD tendencies. But where he is today is a long way from where he was at age 12, and since age 14, he's done nothing but improve in terms of functionality, happiness, age-appropriateness and ability to manage his own "anxious moments." So it's a win in our book! All the best to you! You might do some research but, unfortunately, I think Augmentin might be a penicillin derivative? So, if you truly are allergic to penicillin, it might not be the right answer for you. Still, there are many different abx interventions that people on this forum have found success with. I think the thing about azithromycin (isn't that what's in a z-pac?) is that it has a very short half-life, so it doesn't necessarily stay active in your system all that long. That might be one advantage extended-relief abx like Augmentin XR has in its favor. But it might also be that the azith would be effective for you if you took it for a longer period of time. Hopefully some others will find a chance to post here shortly about their own abx experiences.

My DS took Augmentin XR to great success. He, too, had a lot of lingering upper respiratory issues and we suspect he had some strep in his sinuses, etc., though we never went to the extent of having them scoped as 1) he responded well to XR and 2) at the time, we didn't have trouble convincing his doctor to continue to prescribe it for him. You may have heard of Sammy Maloney of the book "Saving Sammy;" he, too, took XR successfully. In the end, though, my DS was on XR for nearly two years before he could successfully wean off without snapping back like a rubber band. Maybe because the strep had truly "colonized" throughout his sinus cavities or elsewhere? Hard to know, but the XR was effectively while he took it and helped him turn the corner healthwise overall. If you think strep in your sinuses might be part of the picture, you might also try supplementing with n-acetylcysteine (NAC). It's an amino acid that's been studied for a whole host of properties, including its ability to bust biofilms in which some bacteria (like strep) can hide, helping prevent and reduce duration of some viruses (the flu, in particular), and even reducing OCD in kids and adults (a study done by the NIMH and Yale on both populations). Good luck to you!

I don't have any great ideas, unfortunately, Dut. But just wanted to give you a cyber hug and tell you I'm thinking of you and your DD. I'm sure this is all very frustrating, and I hope you're able to get to the bottom of it soon. I suppose, lacking any other lasting relief, maybe getting DD into a sleep study at your local teaching hospital would be a possibility? Maybe they can figure out what's keeping her awake or waking her before she gets a full night's sleep.

That's awesome, Broo100! Here's to a New Year with continued good health for your DS and your entire family!

My DS actually found this via one of his favorite web sites. Fascinating, and hopefully will bring something additional to the table for those of us who already live in a world in which the relationship between the brain and inflammation is well-accepted rather than "controversial." http://mentalfloss.com/article/65435/scientists-discover-new-part-human-body This find is the neuroimmunological version of stumbling across a unicorn. Not only had the system gone undiscovered until now, but textbooks argued against its very existence. As a result, neuroimmunologists have struggled to understand the mechanisms of brain drainage and inflammation. When all other tissues in the body become inflamed, molecules or pathogens are drained into the local lymph cells, where immune cells get activated to continue the fight. “In the brain, we thought this system didn’t exist. When we first saw those vessels, I completely freaked out," Kipnis tells mental_floss. "This discovery is as exciting as it gets.”

I'll also offer that, with my son (he's the one with clinical OCD, though I have my own highly-anxious moments, as well), even a high-quality multivitamin was counter-productive. Nearly all of them contain the same handful of vitamins, including B6 and B12. While my son responds well, and seems to need significant doses of, B6, B12 spins him off his rails. And since I couldn't find a multivitamin that contained sufficient doses of B6 WITHOUT B12, I've had to break his supplements down and give him individual components, rather than relying on a multivitamin. My DS has a tendency toward high histamine, and B12 can drive up histamine production. Some level of histamine . . . in the brain and elsewhere . . . is essential, and histamine is an essential neurotransmitter. But too much can lead to anxiety. Just something else to consider . . . Good luck!

Barbara -- While there are some supplements which have been studied and known anecdotally to assist with OCD and anxiety, I can't stress enough how much working with a therapist is likely to help you as much, if not potentially more. There are a number of therapeutic methods (ERP, especially) that have long histories of success in helping people control such obsessive thinking, and a good therapist will also give you someone else "in your corner," an additional support, especially during tough times. I highly recommend the International Obsessive Compulsive Disorder Foundation's (IOCDF) "Find Help" web page, where you can search for a therapist who is locationally and philosophically compatible for you: https://iocdf.org/find-help/ As for supplementation, it can vary greatly according to one's own body chemistry, so I would suggest two things: 1) only add/change dosage on one supplement at a time, so that you can determine the true impacts; and 2) increase/titer up all dosages very gradually on anything you decide to take, again, so that you can find the "sweet spot" in terms of what your body can best make use of, and not throw anything into a tizzy by slamming your brain or gut chemistry in one fell swoop. You can enter either of these into the search box on this forum and see what others think of these, as well as find some links to research, but the two supplements that come to mind specifically for OCD/anxiety are: inositol (a B vitamin) and n-acetylcysteine (NAC). Inositol is supposed to be a "natural" selective serotonin reuptake inhibitor (SSRI), but you do need to titer it up slowly because low serotonin may not be at the root of your obsessive thinking and if it's not, adding more to the mix may make you feel more anxious, rather than less. NAC, meanwhile, has been found in some studies by the NIH and Yale to have positive impacts on OCD in both adults and kids; it's an amino acid, and you can find this supplement on-line and in places like Whole Foods and The Vitamin Shoppe. Again, though, some folks don't respond well to it despite the research, so it's another supplement to start low and increase very gradually, monitoring how it makes you feel over time. Just in our experience, neither of these is going to be a "quick fix." Not unlike prescription SSRIs. it can take several weeks to find the right level of supplementation and feel the full benefits thereof. In the meantime, I would see if I could find a therapist and maybe try some other holistic-type practices: meditation, yoga, a walk around the block, some valerian root tea. Hang in there! You're not alone!

For more than 6 years, my DS's ONLY PANDAs behavior was OCD and anxiety; it wasn't until it went untreated for all that time that his third major exacerbation brought tics, urinary frequency, trouble sleeping, major emotional lability, etc. to the table. How do I know it was PANDAs rather than "garden variety OCD"? Because within 48 hours of dosing antibiotics, he was a different kid -- in a good way -- for the first time in months. That was a result months -- nay, years -- of neither therapy nor psych drugs had managed to accomplish. Personally, I don't think there is any such thing as "garden variety OCD," except to the extent that the OCD behaviors born of a physical illness (PANDAs/PANs) can become habitual or entrenched, the longer the underlying illness goes untreated. It's like anyone else coping with a brain on fire . . . you develop ways of doing things, ways of addressing the world, that help you deal; and then, even once the brain storm has subsided, it's like asking a person to learn to walk again, to just ditch those OCD behaviors they've been doing for months or even years.