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MomWithOCDSon

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MomWithOCDSon last won the day on April 11

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About MomWithOCDSon

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    All things PANDAS, OCD, travel, pets, education

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  1. 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.
  2. 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!
  3. 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.
  4. 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.
  5. 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.
  6. Marie -- Our DS has not been treated by Dr. Bock, but I did attend a conference at which he spoke and had the opportunity to talk with him afterwards for a few minutes. I also spent a lunch period with a family whose son is under Dr. Bock's care. All the way around, I came away from those exchanges very impressed. Then I read Dr. Bock's book "Healing the New Childhood Epidemics," and my esteem for his expertise and approach only grew. I would think you'd be very fortunate to be under his care. All the best!
  7. Thanks, Jan251! Needless to say, many of us here would say, "Duh!" But then again, it's good to see it in print and validated by an expert in the field!
  8. Hi, and welcome to the forum. I, too, believe that I had PANDAs as a kid that went undiagnosed; I've contended with anxiety issues all my life, though, for the most part, my OCD has remained sub-clinical. But I've definitely developed certain coping techniques that, had I not, I expect my OCD could have gotten more difficult to control. PANDAs as a diagnosis didn't come into my life until my son was diagnosed with OCD at age 6; the OCD came and went until he reached 12, at which point his world inexplicably completely blew apart and the anxiety and OCD became completely debilitating. Finally, a PANDAs diagnosis and treatment, and a turn-around for him. He is fully functional and generally happy and well-adjusted these days, though he continues to contend with some OCD, especially when stressed (he's 20 now and living away at college). Honestly, I don't know that PANDAs or the autoimmune issues permanently damage the basal ganglia, and I don't think the researchers know that for sure, either, at this point. Because I went all my life without PANDAs treatment, and my son went for 6 years before we could convince anyone that his OCD was related to a strep infection and therefore treat him for it accordingly, what I do think can happen is that 1) over time, your brain chemistry (particularly with respect to neurotransmitters) may be altered by the PANDAs experience and/or living with anxiety and OCD itself, and "reprogramming" that may be a lengthy and tedious undertaking, and 2) because the OCD coping behaviors are essentially pervasive, strong habits, eliminating all of those at a more advanced age, after years of engaging in them, can be a tall order. In terms of seeking PANDAs treatment, specifically, at this point in your life, I would consider the following. Do you have any other indications of autoimmune dysfunction, like IBS, eczema, allergies, etc.? If so, then it might be worth testing to see if you have elevated titers (antibodies) that might be settled down via abx or IVIG. Do you have chronic sinusitis or other upper respiratory issues? If so, know that there have been several anecdotal accounts of PANDAs suffers with no discernible, active infection who, via sinus scoping and/or other testing, are found to be harboring strep bacteria within biofilms in their sinuses. We did not go through the scoping with our DS, but because his titers were so high, we were able to secure long-term abx for him and, over time, the sinus issues he'd had for years resolved and have not returned since, convincing us that this was likely part of his condition. At any rate, if either of these situations resonate for you, I would think pursing some basic immune testing, if for no other reason than to rule it out, may be worthwhile. In terms of PANDAs treatment at this point to 100% eradicate your OCD? I would never say "never," but based on our experience, again, that may be a lengthy road, if at all possible. Not necessarily because of damage, per se, but because of altered brain chemistry and/or learned/ingrained habits, as I mentioned before. In the end, I guess I would follow my gut and do what I could to rule out any potential treatments that might help me be my best, happiest, most functional self. Good luck to you! Nancy
  9. We did find some positive results, for everyone in the family (not just our PANDAS DS) with an anti-inflammatory diet. That said, it's not easy because of the restriction on sugars of all kinds (including fructose), wheat/gluten, and even legumes (including peanuts). In the end, we were able to stick to it pretty rigidly for about 9 months, and then most of us loosened up a bit. Still, the regular inclusions and exchanges into our diets of almond butter for peanut butter, dried veggies rather than potato chips, brown rice and/or quinoa pasta rather than whole wheat, and less bread overall, has stuck with us and been beneficial. I felt as though my DS had so much on his plate and so many challenges when he was in the depths of PANDAS, I frankly didn't want to lay anything else on him that would feel like another burden or another thing he couldn't do or couldn't have. But when I made meals that utilized these anti-inflammatory items in exchange for the conventional ones, and they still tasted good and filled him up, it was no big deal for him.
  10. Bobh -- I think your point about abx and the specific nature of the patients in the study is a good one. That said, IMHO, inflammatory and/or immune dysfunction-based mental "illness" is far more prevalent than most of the western medical community -- and/or the general public -- would even dare to believe at this point, so your study group would most likely always be subject to some variability in that regard. I don't know that ruling out or dividing study groups between those identified as PANDAS/PANs and those specifically identified as non-PANDAS/PANs would be possible or, if possible, actually define anything in the end. Quite likely, there are many, many folks out there who DO, in fact, suffer from inflammatory and/or immune dysfunction as root causes (or at the very least, "enhancers") of their mental disorders but have never been diagnosed and/or have never investigated the possibility. I don't know about minocycline specifically, beyond the studies and articles posted here, but I know that when my DS was on abx and seemed to need them for an extended time period in order for his behavioral gains to hold, I found a lot of research about the other qualities/properties of certain classes of abx, including their anti-inflammatory properties, their glutamate-modulating properties, etc. There have been studies associating positive impacts of various abx (d-cycloserine, augmentin, etc.) for schizophrenia, OCD, autism, bipolar, depression and PTSD. Seems to me that our full understanding of these "accidental benefits" is in its infancy, and there's a lot more to research and uncover in this regard. I'm sorry the mino did not appear to benefit your situation, but hopefully you'll find a course of treatment that is beneficial, if you haven't already.
  11. Ladymavs -- Since that post, our DS (14 years old at that time) DID undertake ACT. First weekly, then bi-weekly, for a couple of years. I would say that it was by far the most helpful with the obsessive thoughts. So much so that, by the time he'd completed those sessions, he was pretty much done with therapy for the time being and has since finished high school, gone away to college, and handled himself (and his thinking quite well). I think ACT is ideal for an intelligent teenager who tends to be excessively analytical and thus can find the "hole" in most cases friends and family can make against his perseverative thinking or concerns. Good luck to you!
  12. Just caught this on our local news minutes ago: http://abc7chicago.com/news/mom-leads-fight-to-force-insurers-to-cover-pandas-treatment/1840146/ I don't know how the State could enforce this bill, should it pass, but I still take it all as good news. The march to acceptance, accessibility to treatment, and affordability of treatment continues!
  13. EJH -- My DS was also diagnosed at 12 and, like yours, was prior to that, an academic over-achiever. The fog and distraction and memory issues were very distressing for him, so the biggest hurdle we had was getting him to experience some incremental successes so that he didn't give up altogether and decide he was "never going to get it," etc. Honestly, I would say that it was close to 4 years after dx and commencement of treatment before he was himself again, academically speaking. Sorry, as I'm sure that's not good news. But the good news is that he did, eventually, get back. In the meantime, we worked with his school and did a lot of home coaching so that he didn't fall behind, could do away with "busy work" and repetitive drills and focus, instead, on demonstrating mastery of concepts in a more efficient manner, etc. With math, he seemed to do better when he worked a problem both on paper and out loud, so one of us would sit beside him while he worked the problem and explained it out loud, step by step, to either his dad or I. And one step at a time; if he lost focus, we would gently refocus him to get to the end of that one problem. Lots of breaks and mini-rewards. With major reading assignments, meanwhile, we got permission from the school to do some of the reading TO him while he listened, and over time, we were able to switch more and more of the reading responsibility to him -- first sections out loud to one of us, trading off, but eventually complete solo, silent reading came back to him. We were in a public school, so we wound up getting an IEP for some of these accommodations; additionally, that IEP gave him a resource period during the day where he could catch up on anything he'd had trouble focusing on in the main classroom, along with a case worker who got to know him and the challenges he was having at the time and coach him during the school day. She also helped run interference with any of his regular curriculum teachers who, despite being informed of his condition and the accommodations at the top of the school year, didn't always "get it" or him. By the second semester of his sophomore year, he was pretty much back in the game entirely, and by his junior year, you'd never have known he'd struggled so intensely a couple of years before. I would just suggest that you do what you can to tackle it now so that a pattern of defeatist thinking, anxiety over schoolwork and then avoidance of it altogether doesn't set in and take up residency. Now that he's away in college, I think a lot of the coaching he received during those tough years has served him well. Every college kid hits bumps with a tough class or a tough professor, distractions, etc., and he's no different. But at least partially because of all those really tough years, he built a tool box that he can still reach into when he needs to. All the best to you!
  14. My DS had anxiety/OCD diagnosed from age 6; we didn't get a PANDAS diagnosis until age 12. He had been taking a low-dose SSRI since the age of 8 -- with success -- until he hit this major wall at 12 and then the SSRI, ERP, CBT, etc. couldn't touch the anxiety. A long course of antibiotics is what put him back on track, though he continues to take a low-dose SSRI even today (age 20). To Bobh's point, my DS had had upper respiratory issues (allergies, sinusitis, frequent ear infections and colds) most of his life, and we suspect that strep and potentially other bacterium, as well, had managed to hide out in his sinuses via biofilms, etc. Hence, for the first year or so, every time we tried to take him off antibiotics, he would "snap back like a rubber band" within 7-10 days of cessation. So we'd put him back on again, and his behavior would generally improve within 4 or 5 days. That pattern persisted until he'd been on abx for nearly 2 years, at which point we decided he was stable enough that we could begin to wean him off, very slowly. Finally, after about a 6 month weaning period, he was off antibiotics and except for an ear infection here and a sinus infection there, has been off them ever since. Many people will dissuade you against "psych drugs," and if you can achieve a happy, functional person without them, I'm all for that. We're one of the families, meanwhile, that have definitely benefitted from them. Just be aware that 1) all "psych drugs" are NOT created equal, so do specific research, rather than generalizing, and 2) best to start at a very, VERY low dose -- generally speaking, I would say at about 1/2 what a standard psych would prescribe as "typical" for the patient, and titer up very slowly, if warranted. The biggest issue that appears with PANDAS/PANs kids and SSRIs is "activation" caused by a dose that is too high for them. All the best to you!
  15. DC -- I think this research, like much of the research going on these days with respect to mental "illness," its potential geneses and innovative treatments is great, and promising. Unfortunately, however, our psych has frequently reminded us as a family that research is just that: research. And the road from research to peer-reviewed concensus tends to be a long one, let alone the road from research to on-label treatment options. Research, and even clinical trials, don't have the same standard of care as a practicing physician who's agreed to oversee one's physical or mental health care, so there's a gap there in what one sees in current research progress and what many/most physicians are ready to put into regular practice. That said, we've benefitted from some off-label treatments when the psych or docs felt that the research thus far presented, and still underway, was adequately compelling, so I don't think the door is shut and locked in terms of some new treatment options coming to fruition short of full FDA approval. It takes an intellectually curious doctor/care-giver, though, to stick his/her neck out.