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MomWithOCDSon

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About MomWithOCDSon

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    All things PANDAS, OCD, travel, pets, education

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  1. Yes, I've heard of this particular manifestation of OCD, and though my son never had compulsions or obsessions attached to just a single word, the other thoughts or fears that he would work very hard to avoid because they were, in and of themselves, somehow "bad," were overwhelming at times. And like Plum99 has said, they tended to shapeshift, also. If he was successful in working through and dismissing one, either via therapy or constant exposure exercise at home, quite often another, similar type of "taboo" would creep in to fill its place. I do think that some regular therapy with a psychologist or therapist well-versed in OCD can help you, though in my son's case, anyway, he needed some additional leverage, as well. I know you have a long history here on the forum (PANDAs, etc.), but I can't remember all the interventions you've tried in addition to antibiotic therapy, etc. In our case, once the abx had tackled the underlying infection, my DS's "residual OCD" had managed to become pretty well entrenched in the years he was coping without the benefit of a PANDAs diagnosis or treatment. So we found that an SSRI helped give him the additional leverage he needed to implement the tools and strategies that therapy provided for beating back the intrusive thoughts, etc. OCD brings to the table.
  2. If you are willing and able to travel, why not actually schedule treatment with Dr. K.? While he has offices here in the states, I understand he also spends quite a bit of time in Europe, so perhaps there's somewhere within the EU you could also seek his care? If you are willing and able to pay for your care here in the states (I cannot think of any provisions under which you would not have to bear the full financial burden of treatment, especially since even many of us US citizens have had to pay out of pocket because our private insurance coverage does not recognize PANDAs as a valid diagnosis), I can't imagine that any of the specialists here would decline to treat you, though I am of the impression that Dr. K. has the most familiarity with "adult" PANDAs patients here, as opposed to pediatric ones. Perhaps some other folks here will speak up as to your options. Good luck!
  3. While he was on abx, we wound up giving our DS close to 200 billion units of probiotics on a daily basis: a large count multi-flora formula by Renew Life, plus a Culturelle and a sach b (Florastor, but a less expensive version by Jarrow). We actually tried a little higher, but found that 200 bu seemed to be his "sweet spot," as more seemed to make him gassy. I'm guessing "how much" is right varies from person to person, and from abx to abx. I really like Culturelle and sach b, but I also think using a good quality multi-flora is a good call so you can keep as much beneficial bacteria going as possible. Since he's been off abx, he pretty much just takes a Culturelle every day. All the best!
  4. Hey Alyssa -- I'm a little surprised that your psych has prescribed you a stimulant for your ADHD; were you prescribed this simultaneously with your OCD diagnosis and SSRI treatment, or did one diagnosis and treatment protocol come some time after the other? I ask because my DS has also been prescribed an SSRI and it is generally successful in helping him push back on the "residual" OCD he deals with from time to time, particularly in high stress periods. But there was also a period -- pretty much mid-PANDAS -- during which our psych at the time thought he also suffered from ADHD and wanted to try medication for it. However, he said quite specifically that simulant medications would only serve to increase the OCD, so we had to stay away from those. So I guess I'm wondering if you noticed any "uptick" in your OCD once you started the stimulant? Or if you were to stop the stimulant for a period, if you would notice a curbing of the OCD? There are a handful of non-stimulant ADHD medications available now, among them Intuniv and Straterra, so there are some other alternatives. In the end, in my DS's case, we discovered that he didn't really have ADHD; rather, that his distractedness and hyperactivity were a coping mechanism he'd developed to manage his obsessive thoughts/behaviors, especially in the school setting. So once we got the PANDAS and OCD under control, most of the ADHD behaviors evaporated. Also wondered if you'd heard of Acceptance and Commitment Therapy (ACT) which is growing in popularity for folks who suffer from anxiety disorders? Since you already practice mindfulness, I would think ACT would come pretty naturally to you and might help you deal effectively on a daily basis. Good luck!
  5. Hitman -- Remind me where you're located...in the States? Somewhere abroad? I suspect that the dose of and composition of the amoxicillin you've been given is going to fall short in terms of desired mental impacts. Not only is the dosage low, but straight amoxicillin lacks the clavulanic acid adjunct that Augmentin includes (amoxicillin plus clav acid), and there has been research regarding the mental benefits of clav acid. Some PANDAS kids here (mine included) benefitted greatly from Augmentin 875 mg. or, even more so in our case, Augmentin XR which is an extended release formulation which comes in 1,000 mg. tablets. The advantage of the XR may be that it stays active in the system longer given that cellulose component which allows it to distribute more slowly, but if I recall correctly, the straight Augmentin 875 mg. contains a higher clav acid component, which might be why your consult suggested this. I know there's a thread or two here on the forum regarding this, so you might run a search for "clav acid" or something along those lines and see what you find. As for the gastro-intestinal impacts, yes, I think those will fade over time as your body adjusts to the addition of the abx. I would add a probiotic or two, if you haven't already, to help repopulate your gut flora and keep things from getting off-kilter there. This might be another vote for the XR formulation, too, since the entire dose won't hit your system at once. In terms of feeling the effects/impacts, it really does vary. My son was entirely non-functional at the point that we finally got access to abx for him, and he was markedly improved within 48 hours of his first dose; however, again, he started at such an incredibly low point, almost anything would have been an improvement at the time. In his case, return to full, up-to-speed cognitive function was a longer, slower process (sorry); the lift of the brain fog, improvement in executive functioning, return of clear "normal" speech patterns, etc. were a slow, gradual result. In his case, I attribute that to the duration of time for which he suffered before we got meaningful help and the need for the inflammation to be halted and reduced, healing of the blood brain barrier (BBB), etc. Why I think it likely that, given the right abx at the right dose, you are likely to "feel" better within a relatively short period of time (mood lifting), I suspect it will take a little longer for the brain fog to clear and your cognition to return in full. Sorry you're dealing with this but I wish you a speedy recovery!
  6. Looking -- There have definitely been Canadian families on the forum over the years (I first came on-line here about 8 years ago), but I'm not sure which, if any, of those are still around. Most of the PANDAs "specialists" -- either pediatricians or immunologists who have made PANDAs a focus of their practices -- that I'm aware of are here in the U.S. Some of them offer Skype or phone consultations; you send your kid's medical records to them and then make an appointment. But those appointments are not, so far as I know, covered by any insurance companies, and they can be quite expensive. The pinned threads are here: Everything from doctors forum participants have found who were helpful (there might be a couple from Ontario in there, I'm not sure) to research to other primary topics. Effectiveness....in the case of PANDAs, we are generally measuring that by our kids' behavioral response, more so than by the standard medical measures. So, if your daughter's tics begin to fade or subside entirely in the next few days, then it would seem the amox/clav combination you've been given IS effective for her; you're correct that it may take a few days to make a visible impact. How long is this prescription? 10 days (typical for amox/clav here in the States). Here's the thing, though. I'm not a scientist or a doctor, so I'll direct you to the research papers for the specific facts on this, but like I said before, many of us have found that a single, standard course of antibiotics isn't enough for our kids, and that's not always because they continue to test positive for strep in a conventional way (throat swab). There seems to be something of a "delayed" effect whereby the strep antibodies continue to attack the basal ganglia for a period even after the kid no longer tests positive for strep, after the "active" infection has come and gone. Hence the "auto-immune" component of the PANDAS/PANs syndrome. So longer courses of antibiotics and even in some cases other immune-modulating therapies like IVIG, are what get our kids back to "normal." You might want to consider this publication; it was authored by a mom forum participant with a long and deep history of helping her two children through PANDAS/PANS who also has an impressive ability for digging into and retaining complex research on the topic. I think that this book will probably give you all the basic information you want/need to have in hand to marshal your daughter through treatment with your doctors in the most succinct, readable form currently available. You could also spend hours, days, weeks, months reading through topics here on the forum and learn a lot, but who has that kind of time?! https://latitudes.org/store/should-you-consider-pandas-ebook-pdf Sorry, but this is such a huge topic, truly, and I have next to no knowledge with regard to your available Canadian resources. Other than checking out those pinned threads, I would probably just drop "Canada" or "Canadian" into the search box on the forum and see what comes up there.
  7. So sorry you're going through this, but welcome to the forum. I'm sure others with more recent experience will chime in, but given your pediatrician's response, I'm wondering if he/she is truly PANDAS-savvy? Did the doctor tell you why the switch in antibiotics when the Zithromax -- other than not fully eradicating the strep in 5 days -- seemed to be effective? When you say "tested positive for strep" still, after the Zithromax, was that by a throat swab culture, or was it a blood draw that tested for strep antibodies (titers)? It may be that the amoxicillin (even with the clavulanic acid -- I'm familiar with that being called Augmentin, but maybe yours is a difference synthicyzation of the same components, or you're outside the USA?) -- isn't the right antibiotic for your kid, or for the strain of strep you're dealing with. There are some threads at the top of this PANDAS forum -- pinned threads -- that include some basic background on PANDAS including research papers, etc. It might be worth going through a few of those and sharing them with your doctor. But in the end, most of us find that a short-term antibiotic course is insufficient for PANDAs and that a longer-term prescription (usually more than 10 days -- 30+ days) is needed. Unfortunately, depending on your child's immune system and some other factors the researchers are still trying to definitively figure out (genetics, etc.) why some interventions appear most effective for some, and others most effective for others. I wish you the best!
  8. Hi! So sorry you're going through this, and I can appreciate your desire to connect with others who find themselves in a similar situation. That being said, though, I worry a little bit that were you to find someone going through similar challenges right now, that you might not find yourself even further distracted and perhaps indulge in the OCD even more, supported by the similar tendencies in your newfound fellow traveler? I say this as a mom of a college student who, having effectively "beat" PANDAS, continues to struggle now and again with anxiety and OCD, depending upon the circumstances. But much of his motivation for moving on and through the challenges that remain has been provided by his friends and relationships that are "normal," aka, not similarly anxiety or OCD-ridden. They help him distinguish between the thoughts that can plague him from time to time and the thoughts more typical of his peer group and encourage him to let things go more readily. As a result, he really doesn't want to spend time reliving his issues or dissecting and analyzing them. He just wants to continue moving forward toward a "normal" life. I also say this as a "support person" for a guy about your age who reached out to me several years ago via this forum, and we struck up a phone and email correspondence as he was struggling through finding effective treatment for his PANDAS/OCD and working through being functional in college, in his relationships, etc. I tried to be a support and sounding board for him, but I got the impression much of the time that I was just aiding and abetting his OCD, giving it something to cling to, because he could call me and further perseverate and mis-prioritize spending his time talking with me/complaining to me, rather than moving on with his life. But as his medical and mental treatment programs became more effective, he had less and less need for me, and now I've not heard from him for a few months . . . the longest stint of silence in quite some time. But in our last exchanges, I could tell he was feeling better, more capable, more "normal," and finding his way through some stressful situations without resorting to hefty OCD behaviors. You've said that you have good doctors, friends and a supportive family, etc. so I find myself wondering, is it that you don't want to somehow "burden" them with your troubles? Or is it that you think they just don't get what you're currently going through? Or is it that they, maybe similarly to our family, have been trained/educated to not aid and abet the OCD by catering to it, and therefore you sometimes feel a sort of rejection or lack of understanding because they don't support your fears and anxieties to the extent you feel they need to be supported? And, in terms of treatment, have you been recently checked for infections and/or inflammatory markers that could be contributing to the strength of the OCD now? Have you tried anti-inflammatory responses -- change in diet, supplements, etc.? Are your care providers supportive with respect to investigating these contributors and/or ruling them out or treating them? Do you see a therapist on a regular basis? From what we, and many others on this forum have experienced, effectively managing anxiety and OCD, even as an older, more experienced person, can be very difficult if not impossible if an underlying infectious or other immunological cause is not effectively dealt with; unfortunately, all the CBT and ERP, or friend or family support, in the world has a hard time taking effective hold if your body has lodged an assault against your brain. I can tell from your story that you are strong and persistent, great qualities for a person who faces these sorts of challenges. I feel certain you will get through this. I wish you all the best.
  9. Like many other things, the whole streptococcus in probiotics issue is one for which there are multiple -- and sometimes contrary -- opinions. If you search here on the forum for "probiotics" threads, you'll see that some doctors have advised staying away from all strep strains, and others have argued that those strains, in those formats, have no negative impact. If you've been sensitive in the past, might it not be good to start out with a single strain probiotic, and then add another single-strain and so on, so that you can monitor what, if anything, seems to be problematic rather than helpful? I agree that a good-quality multi-strain probiotic is ideal, but it might be tough to discern the wheat from the chaff in your case. Many folks here have used Klaire products, and we like the Renew Life line. I would search this forum for the probiotics threads, however; there's a lot of information there, including research papers, personal experiences dating back some time among the participants here, etc. Good luck!
  10. Mama4 -- If you've searched threads on the glutamate topic here, then you've probably seen plenty of my posts in that regard. We've never done Nutrahacker or any other gene testing to date with DS; we "lucked" and trialed-and-errored our way into effective treatment without it. My introduction to the glutamate connection with PANDAs and anxiety behaviors in particular came via research conducted by Dr. Rothstein with respect to glutamate modulation in anxiety disorders and the glutamate modulating properties of beta lactam antibiotics. I did some reading on a non-glutamate diet but honestly, given all the naturally occurring glutamates even in fruits and vegetables, it really did just appear to us, for our family and lifestyle at least, to be overly-restrictive. We do, however, eat preservative-free and largely gluten free (rice and quinoa pastas rather than wheat, next to no bread, etc.), and that has been a positive for all of us in terms of weight and general inflammatory issues. NAC has been a part of my entire family's supplement regimen for years now; DS takes the most given as he has the highest tendency toward anxiety, but DH and I also take it as it has also been studied for effectiveness in combatting flu and other respiratory illnesses. It has been good for all of us, but yes, there are some who don't respond well to it. Perhaps one or more of them will speak out and give you some information that will help you better determine NAC's suitability for your DS. I, personally, am convinced that glutamate immodulation is a significant player in my DS's situation, though I realize there are a number of more primary culprits for others. All the best to you as you work out the best path forward for your family. I'm sure you'll find it.
  11. My son's official diagnosis for his 504 plan was obsessive compulsive disorder (OCD), as we were not successful in getting a PANDAS dx until many years later. By the time they implemented the IEP, we added our freshly minted PANDAS dx to the paperwork, but I let the OCD primary label stand. I know many families would not be comfortable with that and would have concerns that PANDAS issues and symptoms might get lost in the fray. Plus the OCD label is decidedly "mental" as compared to a PANDAS dx which would, hopefully, be "medical," though since it still is not in the DSMV, I'm not sure how that might impact the legal issues surrounding the IEP paperwork. In the end, the PANDAS stuff didn't get lost in the shuffle in our case, and we were okay with the primary focus lying on the behavior set and how it might impact DS in the school environment. We were not actually asked for any additional documentation or medical files; they did request permission to speak with our DS's psych and therapist, which we gave. In your case, they may ask for access to your diagnosing physician. But I wouldn't think you'd need to give them carte blanche access to your DS's medical files. Another tidbit I forgot to mention last time regarding IEP's that, in our case, weighed toward our agreeing to it when we did (pre-high school): in our area, anyway, the older a kid gets, the harder it is to apply for and receive an IEP. Now, hopefully, your kid won't even need one by the time he gets to high school; with IEPs, if you don't need/use accommodations over time, they generally get stripped from the plan due to your kid's "demonstrated progress." But if, like some of our kids, he winds up doing the "PANS dance" for a few years and needs the accommodations periodically over the next few/several years, getting that IEP in place now might prove to be advantageous. I guess, particularly in competitive school districts, some parents will lobby to get their high schoolers IEP plans for -- and pay neuropsych testing companies thousands of dollars for testing to support -- dx's like ADD, ADHD, processing delays, etc. so that they can qualify for advantageous accommodations (extra time, separate testing environment, etc.) for college entrance exams (ACT, SAT). So the school districts have gotten much stingier with these requests and have erred on the side of ruling against, rather than for, such applications.
  12. Our DS, also, was in a large public school district and initially had a 504 plan. When he had his first really extreme exacerbation with extreme anxiety, OCD and attention issues, that's when the district suggested we move to an IEP. Like you, I was reluctant at first, but I will tell you that it was the best thing we ever did. Frankly, from what I hear, you and I are among the fortunate few for whom it is actually the school's idea that an IEP be implemented; more often than not, families feel they need/want an IEP for their kids to be successful in school, but the school drags its feet and throws up obstacles because these plans entail additional costs, paperwork, administration, etc. for them. The testing, I think, is difficult for our kids, depending on where they are in their PANDAS/PANS or healing; talk with the school psychologist or whoever would be administering the testing about that. In our case, we were able to arrange for a couple of briefer testing sessions over a couple of days so that DS's anxiety didn't skyrocket. Also, I would suggest being well-prepared for that first IEP meeting; "load" the conference table with people you know have your kid's back (as well as yours): a favorite teacher (past or present) who seems to "get him;" a family friend or relative with some credentials (a teacher, a doctor, a psychologist) who can add some third-party color to a discussion of your son's challenges as well as his talents, etc. The thing is, the IEP is a structured, fairly formal document and it can look imposing and have all sorts of red flags all over it in terms of how you may fear it will impact your kid. But in the end, it is the human beings in your kid's academic realm who'll administer it, and there are usually at least a couple of people -- if not most of the educational professionals in the room -- who understand that the facts on the ground, and what's best for your kid, will likely require some deviation from and flexibility within the plan that doesn't necessarily make itself apparent in the document itself. The special education teacher who became my son's first official "case worker" under his IEP took me aside after that first meeting and basically said, "Look, we have to jump through these hoops because of the regulations involved. But I want you to know that I will do what's right for DS, whether it's within the written plan or not, and then it's MY job to maintain the paperwork trail in a way that works for both him and for the school." And that's exactly what he did. And that's what every case worker for the remainder of my kid's public school career did, year after year. I know we were very lucky, but I'd like to think we weren't one in a million in this regard. For the most part, I think the folks that go into careers as special education teachers, school psychologists and social workers are truly in it to help our kids, and fulfilling all these regulations and paperwork is just part of the necessary evil in getting that done. Now, the administration -- that can be a different story, since their primary charge can be to make sure the school abides by all the regulations and is not subject to any negative impacts by virtue of an unfavorable audit regarding special ed programs, etc. But they're not really the ones "in the trenches" with your kids, so it's the others who are that you want to know are in your kid's corner. And in our experience, they usually are. Also, my son was in the school's gifted program, as well as having an IEP; in our district, these two were far from mutually exclusive. In fact, to some extent, "special needs" and intellectual gifts seem to come somewhat hand-in-hand -- "2E," or "Twice Exceptional." Hope something here resonates on some level. All the best to you and your family!
  13. My first thought is, did you ask your DS why his medication was still in the pill box? What did he say? I don't know what the principal means by "appropriate times," but I would wonder if your DS didn't want to take the pills on a regular basis in front of his friends/classmates; if, like my kid, he wanted to be "normal" and "like everybody else" for those 6 days, maybe? It's hard to know what the group dynamics were, what the housing/rooming situation was, etc., but I guess I could understand that, at this age, the chaperones didn't feel as though it was appropriate for them to hover over your DS to ensure he took his medication. You trusted him with the pill box, rather than a chaperone, so perhaps they took that as an indication that you more or less trusted him to take his medication as appropriate, and they took a similar path? I would talk with your DS about it and perhaps brainstorm some strategies for the next trip, either so that he doesn't forget (whether or not there's an adult present to remind him), or so that he feels like he can take whatever he needs to take without "making a spectacle" of himself. When my DS was a little older (9th grade) and out of town on a school robotics competition trip, we talked about how he would take his meds first thing in the morning, with a glass of water from the hotel room tap, before he even left the room for breakfast or whatever was on the schedule. That way, he had at least a little privacy and didn't have to haul the meds around with him, or run the risk of forgetting. Another idea might be to set up reminders on his phone so that he gets beeped or whatever to remind him, if he's the forgetful type. Otherwise, for the next trip, you might request a one-on-one conversation with the head chaperone and ask, specifically, that they find a moment to pull your DS aside, outside the hearing and/or eyes of his peers, and ensure that he's on schedule with whatever he's supposed to be taking.
  14. Wasswa -- You can get the non-hallucinogenic component (cannabodoil or CBD) in a tincture form; it can be placed in drops under your tongue, or put into empty gel caps and consumed. Many families on some of the forums here (PANDAS/PANs primarily) have used it for addressing anxiety issues with their kids. The CBD oil can be purchased via Amazon and other on-line outlets, and given as it doesn't contain THC, is legal to purchase pretty much anywhere. Since you don't smoke and have not tried pot previously, this might be a good option to try and see if the CBD is helpful to you.
  15. I'm sorry I don't have any specific suggestions for you, either, unfortunately. Most PANDAS/PANs specialists of which I am aware are generally booked well into the future and focused almost solely on office visits and/or potentially IVIG in a clinical setting. As for full-on hospitalization, though, I can't say for certain that there are any PANDAS/PANs experts who would oversee that. Based on your description, it seems to me you would benefit best from either a PANDAS/PANS specialist or an integrative/functional medicine professional, but in my experience, few of those are affiliated with hospitals. It sounds as though you are dangerously, medically ill, however, given your eating restrictions, etc. I might suggest that you reach out to either one or both of the larger medical institutions (Stanford Medical in California or Massachusetts General in Boston) and see if they can/will help you. Both of these institutions recognize PANDAS/PANS and have affiliated specialists, but I'm just not clear as to hospitalization.