MomWithOCDSon

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.

I want to make sure everyone gets this link to the Discover article "Hidden Invaders" on PANDAS. Someone posted about the article on this forum and now Discover has posted it online so it's easy to share.
 
http://discovermagazine.com/2017/april-2017/hidden-invaders#.WQsk069P1mI.email

http://www.mdedge.com/clinicalpsychiatrynews/article/131114/pediatrics/antibiotics-have-role-pans-even-no-infection

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!

Nancy, you are right - there is always going to be variability in the subjects of any study, and that is often difficult to deal with.
 
I was specifically annoyed that they were discussing OCD and abx (minocycline) as if this was amazing new ground, without even whispering the word PANDAS in this article (i.e. the first article posted in this thread). I don't believe the researchers themselves could have missed running across PANDAS in their background research, so I concluded that either they didn't believe in PANDAS, or didn't want to get involved something they thought was a hot debate, or the media that published this story took out any reference they made to PANDAS for similar reasons. Whichever it is, all those reasons annoy me.
 
But further to your comment, when significant observational (i.e. not placebo controlled) studies are done, considerable time and effort is spent removing the effect of what they call "confounders". They can adjust results based on known attributes of subsets of the group. This can only be done really well for large sets of data, but they had 80 subjects here. Its one thing to decide to not do anything about a subgroup that likely makes up about 25% of your patients because you don't believe you have enough numbers (I don't think that is so, by the way), but its quite another thing to not acknowledge it at all, especially when what is being done elsewhere for that subgroup is so related to your "new" research (effect of abx for OCD). This point is on top of all the other (i.e. immunomodulatory) effects of abx you point out - that too has been studied before this work was done.

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.

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.

I would refer you to Dr. Swedo's research out of the NIMH, but I believe she has documented and extended temporal relationship (longer time period between exposure and bloom or rebloom of symptoms) with subsequent strep infections. In other words, as I recall hearing her speak at a conference, the first strep infection may inspire psychiatric symptomology fairly quickly (within days or weeks). But the more repeated infections and/or exposures, the more extended the timeline tends to become so that it becomes somewhat more difficult to maintain the temporal evidence.

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
 
 

http://www.bbc.co.uk/news/health-38220610
 
Interesting. Not PANS, but might get them interested? Antibodies to NMDA receptors, that's the same thing that was involved in the "Brain on Fire" case, isn't it?

Northern CA Parents, please come to the screening of My Kid Is Not Crazy on February 23 in Menlo Park:

"PANDAS NETWORK IS PROUD TO PRESENT A SPECIAL FRIENDS & FAMILY SCREENING OF: MY KID IS NOT CRAZY, A SEARCH FOR HOPE IN THE FACE OF MISDIAGNOSIS.
Come to the screening where filmmaker, Tim Sorel, will be present to discuss the making of the film.
My Kid Is Not Crazy, tracks the journey of six children and their families as they become tangled in the nightmare of a medical system heavily influenced by the pharmaceutical industry. Here it is common for a healthcare provider to prescribe a young child with a Selective Serotonin Uptake Inhibitor (SSRI) but hesitates to prescribe an antibiotic to counteract a potential infectious-based trigger. For some of these kids, what happens after several years is shocking and sad."


Here's a link to info on Facebook https://www.facebook.com/events/1288292294567785/

Link to buy tickets https://www.eventbrite.com/e/my-kid-is-not-crazy-a-search-for-hope-film-screening-tickets-30312376133

Thanks. I didn't try this one, but we'll see his doctor next week and I'll ask.
In the meanwhile she said to hold off on the Alinia and increase probiotics, and that took care of the stomach issues immediately.
 
WS

So nice to see you on the forum again too! You were always a few steps ahead of us in recovery, and were a guiding light! you talk about "now the your son is home for the holidays", so I am assuming he is away at school or living away from home now? So very glad for you and him! I remember that he did very well in High School and really has a good head on his shoulders!

 

 

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!

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!

Yes, remission is possible and is often achieved. You won't hear about it on forums because once people are healed, they move on and no longer live on forums. My son was stricken with Pandas and Lyme at the age of 6. He underwent many, many treatments and finally came out on the other side. He's 14 now and Pandas hasn't significantly impacted his life in about 3 years. About once a year, some nasty bacterial bug will pass thru school and he'll come home not feeling "right". He'll take an herbal antibiotic for several days and the Pandas stuff never has a chance to mushroom into something. Other than these times, he's 100%.
 
I think the key is find/treat your trigger, realizing it may not always be strep and it may not always be just one thing. Along the way, my son had to battle strep, Lyme and mold, plus some nutritional deficiencies. Now that these are addressed, he's able to enjoy physical and mental health.
 
Remission doesn't just "happen" - just like anyone who achieves great things, like an athlete or entrepreneur, reaching a goal takes a lot of hard work and perseverance. But it is absolutely attainable.
 
Best of luck!

MJL --
 
So sorry you're going through this; it truly stinks! And being hit with it as a teenager is probably all the harder because his "life before OCD" probably is such a clear, "happy" memory for him.
 
My DS was dxed with OCD at age 6; we dealt with it off and on for the next 6 years (therapy, medication, periods where It was not intrusive, periods where it was very intrusive) before he was finally diagnosed with PANDAS and we realized that he was harboring strep and reacting to that with OCD behaviors. Once we got the strep and immune response under control, his OCD and anxiety decreased dramatically, but he still tends to "rev at a high RPM" and reaches back to some OCD behaviors and anxiety at times, particularly when he's under atypical pressure.
 
I don't know if you've looked into PANDAS/PANS at all but if not, it might be worth just ruling it out, at least. Especially as you're now on your second medication trial and it doesn't appear to be effective. That being said, whether your DS's OCD is microbe-driven or not, I know from experience that confronting the behavior set is important . . . and HARD!
 
How do you help him challenge the OCD while also being supportive? We did our best to separate the OCD from the boy, and to "call out" and express a no tolerance policy for the OCD, as separate and distinguished from the kid. For example, if he quibbled with his glass or silverware at the dinner table because it had "spots" (water spots) on it and insisted that they were dirty and needed to be replaced, we'd tell him those were his glass and silverware for the meal, and he could use them or go without or use his hands, but while we welcomed him to the dinner table, his OCD was uninvited and unwelcome. If he took it a step further and refused to eat because his glass and/or silverware were "dirty," then we'd allow him to get up and replace them himself (no helping hands from us!), but then, in exchange, he had to take care seeing to it that ALL the dirty dishes in the house were cleaned for the next week, or some sort of equal-exchange exposure-related task.
 
OCD support groups for kids his age? I would contact the International Obsessive Compulsive Foundation (IOCDF) and see what they might have available in your area? And I believe they have an on-line portal for teenagers, as well. I know that they have programming at their annual conventions specifically for teenagers who are dealing with OCD, and sometimes local "chapters" or groups run programs, as well. The IOCDF is a great resource, overall: https://iocdf.org/
 
What have we learned from treatment? That "tough love," particularly as your kid gets older and is thus more intellectually capable of finding loopholes and/or hiding their obsessions and compulsions, is essential. That a consistent "OCD is unwelcome here" response can eventually get results, but it's not fun when it's in process. That OCD is like kudzu, creeping around looking for fresh vulnerabilities, and you have to keep it pruned back or it will just get stronger and more invasive and consume more of your life. That, while actual exposure exercises can be tough and feel "unnatural," life offers a whole lot of more organic exposure opportunities that can be beneficial, like taking your contamination-wary kid to eat lunch at a mall food court, at a table with crumbs on it from its last occupant, etc.
 
What tools/techniques have worked best? It has varied, depending upon the behavior and the circumstances, but I really think that consistently and definitively shutting out the OCD, while embracing and encouraging and celebrating your kid and his victories over the OCD, however subtle, has been our best ally. Our DS knows that, if he hits a rough patch, we're there for him and will help him push through. But he also knows that if he caves entirely to an OCD compulsion and allows it to have a palpable impact on his life, that he will be doing it alone and facing the consequences alone. So, for instance, at 15, if he spent so long in the bathroom that he missed a dinner reservation at his favorite restaurant, then we didn't push the reservation back or reschedule it; he had to make a sandwich or heat up a microwave meal for dinner instead. It's really, really hard when they become upset, tearful, full of self recrimination, etc. Then I would wind up feeling like the biggest, baddest mom on the planet, and I'd want to fold. Eventually, though, I learned that, rather than folding in that instance and thus giving him the impression that the OCD could call the shots or control our family dynamic, I could find another opportunity to be warm and fuzzy, buoy his self-confidence, compliment him on an instance in which he pushed back at the OCD all on his own, or "shrunk it" so that it impacted him less than it had the day or week before. Stuff like that.
 
Is there light at the end of the tunnel? I would certainly say so! It can just be hard to see it sometimes, particularly as you're trying to find something -- the right SSRI, the correct therapist, or even the right diagnosis (PANDAS/PANS) -- to at least help your DS get some leverage over the OCD so that fighting it, shrinking it, is even just a little less difficult than it was the day before. Unfortunately, it is a marathon, rather than a sprint, in most cases. But you can get to the finish line, and so can he.
 
Hang in there! Wishing you all the best and hoping something I've said has some resonance for you/your situation. Feel free to touch base at any time!
 
Nancy

Its so hard to figure out at times what the underlying cause may be - you have to play medical detective. I would suggest a full blood work up, including strep, mycoplasma, lyme & co-infections, thyroid, and inflammatory markers (sed rate, c-reactive, gad -65,etc). Are you treating the yeast?
 
Regarding the intrusive thought- one thing I make clear to my teen daughter (who is currently dealing with one nagging intrusive thought) is that all ocd thoughts are equal on the playing field. Like the above person said, they are just thoughts and there should be no shock value to them, however bad or intrusive they are. Any good therapist should make you aware of that. If you feel uncomfortable seeing someone, maybe try writing down your thoughts and progressing to paragraphs around situations of your thought. Don't write it differently. Try doing this numerous times throughout the day. People with ocd don't act on their thoughts - its the anxiety around the thought that keeps it strong and persistent, and quite the opposite of their character.
Example - if you had ocd thoughts you are gay (or straight - works both ways), you could write down situations of you acting out on gay thoughts. Its the same for all ocd thoughts, whether you have a fear of germs, vomiting, fear of sexuality, fear of harming someone. They are just absurd thoughts. By repeating exposures over and over, it brings down the fear level/shock value.
 
 
Hang in there - and trust me you are not alone

http://discovermagazine.com/2010/jun/03-the-insanity-virus (this article is old, from 2010)
 
 
phase 2 clinical trial http://www.servier.com/content/geneuro-announces-launch-phase-iib-proof-concept-study-gnbac1-multiple-sclerosis-and-servier
https://clinicaltrials.gov/ct2/show/NCT02782858 (news article 2015)
 
Really interesting stuff, though I wish science moved a little bit faster!

Hi Unsprung!
 
The whole "making sure the disability office was readily accessible and proactive" was a piece of advice we got from an educational consultant at an ICODF conference a couple of years before DS was ready for college. She led a great session about the college selection process (geared toward kids with OCD and anxiety disorders, but we found it to be pertinent pretty much across the board with respect to PANDAs, also), and this was one point she stressed. She cautioned that, for some schools, even having a Disability Office is something of an afterthought, and it might be stuck in some far-off corner of the campus with only part-time personnel, etc.
 
So, yes, we investigated that by visiting the campuses, by asking the question(s), by scheduling an appointment with the Disability Office in advance so that we could stop by, meet the director of that office, etc. Finding out what the hours of the office were, who would be DS's "go-to" person should he need assistance, how to go about securing necessary accommodations (if any), how DS could reach someone (email? phone? appointment only?).
 
I'm delighted to report that my DS is now finishing the first semester of his sophomore year, and he is doing GREAT! To be honest, we never could've dreamed of this level of happiness and success for him when he was in the throes of PANDAS, but he has really come into his own in the last couple of years. His PANDAS symptoms have pretty much entirely subsided, and though he still has access to some accommodations (reasonable extensions on projects/assessments, assessments in an alternative environment, private dorm room), the only one he still takes advantage of is the private dorm room, as he still values that privacy and opportunity to occasionally regroup in his own space. Also, by virtue of being registered with the disability office, he and other students similarly registered are afforded early registration for classes each semester -- about 5 days before the rest of the population can register; that's been great, too, because he's been able to be more selective about his classes and professors than might otherwise be the case. The disability office has been helpful, particularly early on, contacting his professors to make them aware of his accommodations, etc., though he has admitted he doesn't really turn to those personnel much anymore these days as he doesn't feel he needs the added assistance.
 
DS is thriving, and because I think the key was getting him into college, and keeping him there long enough to find his "groove" and his "tribe," I do think the initial selection and the involvement of the disability office and the accommodations were key. Thankfully, as our kids do many things, he seems to be outgrowing his need for those things now as he's pretty much fully settled in, but had we not had them to begin with, I fear he may not have been able to stick it out through the transition to find this "happy place" he's now in.
 
Really, this session at the IOCDF conference and my own, well-honed "helicopter parenting" skills through the junior high and high school PANDAS years are what I had to go on in terms of DS's collection selection guidance. Another thing that the consultant stressed in that session was to be wary of, in general, the high-pressure, competitive schools because even though our kids tend to be good students, many times even academically gifted, those environments don't tend to be very supportive of kids who may hit rough patches or need accommodations. And then the kid's sense of failure that may develop in that kind of environment can lead to a level of self-recrimination and lack of confidence overall. That's one reason we sort of steered our DS away from schools like MIT, even though he likely could have gotten in, at least for his first year. He can always transfer if he comes to find he needs something more challenging, or he can save the bigger name school for his graduate school studies.
 
I've got the handout/slide print-outs from that IOCDF conference session around here somewhere. If you'd like me to send you a copy of it, feel free to PM me with an email address, and I'll dig them up for you.
 
All the best!

Hi Unsprung!
 
The whole "making sure the disability office was readily accessible and proactive" was a piece of advice we got from an educational consultant at an ICODF conference a couple of years before DS was ready for college. She led a great session about the college selection process (geared toward kids with OCD and anxiety disorders, but we found it to be pertinent pretty much across the board with respect to PANDAs, also), and this was one point she stressed. She cautioned that, for some schools, even having a Disability Office is something of an afterthought, and it might be stuck in some far-off corner of the campus with only part-time personnel, etc.
 
So, yes, we investigated that by visiting the campuses, by asking the question(s), by scheduling an appointment with the Disability Office in advance so that we could stop by, meet the director of that office, etc. Finding out what the hours of the office were, who would be DS's "go-to" person should he need assistance, how to go about securing necessary accommodations (if any), how DS could reach someone (email? phone? appointment only?).
 
I'm delighted to report that my DS is now finishing the first semester of his sophomore year, and he is doing GREAT! To be honest, we never could've dreamed of this level of happiness and success for him when he was in the throes of PANDAS, but he has really come into his own in the last couple of years. His PANDAS symptoms have pretty much entirely subsided, and though he still has access to some accommodations (reasonable extensions on projects/assessments, assessments in an alternative environment, private dorm room), the only one he still takes advantage of is the private dorm room, as he still values that privacy and opportunity to occasionally regroup in his own space. Also, by virtue of being registered with the disability office, he and other students similarly registered are afforded early registration for classes each semester -- about 5 days before the rest of the population can register; that's been great, too, because he's been able to be more selective about his classes and professors than might otherwise be the case. The disability office has been helpful, particularly early on, contacting his professors to make them aware of his accommodations, etc., though he has admitted he doesn't really turn to those personnel much anymore these days as he doesn't feel he needs the added assistance.
 
DS is thriving, and because I think the key was getting him into college, and keeping him there long enough to find his "groove" and his "tribe," I do think the initial selection and the involvement of the disability office and the accommodations were key. Thankfully, as our kids do many things, he seems to be outgrowing his need for those things now as he's pretty much fully settled in, but had we not had them to begin with, I fear he may not have been able to stick it out through the transition to find this "happy place" he's now in.
 
Really, this session at the IOCDF conference and my own, well-honed "helicopter parenting" skills through the junior high and high school PANDAS years are what I had to go on in terms of DS's collection selection guidance. Another thing that the consultant stressed in that session was to be wary of, in general, the high-pressure, competitive schools because even though our kids tend to be good students, many times even academically gifted, those environments don't tend to be very supportive of kids who may hit rough patches or need accommodations. And then the kid's sense of failure that may develop in that kind of environment can lead to a level of self-recrimination and lack of confidence overall. That's one reason we sort of steered our DS away from schools like MIT, even though he likely could have gotten in, at least for his first year. He can always transfer if he comes to find he needs something more challenging, or he can save the bigger name school for his graduate school studies.
 
I've got the handout/slide print-outs from that IOCDF conference session around here somewhere. If you'd like me to send you a copy of it, feel free to PM me with an email address, and I'll dig them up for you.
 
All the best!

Hi Unsprung!
 
The whole "making sure the disability office was readily accessible and proactive" was a piece of advice we got from an educational consultant at an ICODF conference a couple of years before DS was ready for college. She led a great session about the college selection process (geared toward kids with OCD and anxiety disorders, but we found it to be pertinent pretty much across the board with respect to PANDAs, also), and this was one point she stressed. She cautioned that, for some schools, even having a Disability Office is something of an afterthought, and it might be stuck in some far-off corner of the campus with only part-time personnel, etc.
 
So, yes, we investigated that by visiting the campuses, by asking the question(s), by scheduling an appointment with the Disability Office in advance so that we could stop by, meet the director of that office, etc. Finding out what the hours of the office were, who would be DS's "go-to" person should he need assistance, how to go about securing necessary accommodations (if any), how DS could reach someone (email? phone? appointment only?).
 
I'm delighted to report that my DS is now finishing the first semester of his sophomore year, and he is doing GREAT! To be honest, we never could've dreamed of this level of happiness and success for him when he was in the throes of PANDAS, but he has really come into his own in the last couple of years. His PANDAS symptoms have pretty much entirely subsided, and though he still has access to some accommodations (reasonable extensions on projects/assessments, assessments in an alternative environment, private dorm room), the only one he still takes advantage of is the private dorm room, as he still values that privacy and opportunity to occasionally regroup in his own space. Also, by virtue of being registered with the disability office, he and other students similarly registered are afforded early registration for classes each semester -- about 5 days before the rest of the population can register; that's been great, too, because he's been able to be more selective about his classes and professors than might otherwise be the case. The disability office has been helpful, particularly early on, contacting his professors to make them aware of his accommodations, etc., though he has admitted he doesn't really turn to those personnel much anymore these days as he doesn't feel he needs the added assistance.
 
DS is thriving, and because I think the key was getting him into college, and keeping him there long enough to find his "groove" and his "tribe," I do think the initial selection and the involvement of the disability office and the accommodations were key. Thankfully, as our kids do many things, he seems to be outgrowing his need for those things now as he's pretty much fully settled in, but had we not had them to begin with, I fear he may not have been able to stick it out through the transition to find this "happy place" he's now in.
 
Really, this session at the IOCDF conference and my own, well-honed "helicopter parenting" skills through the junior high and high school PANDAS years are what I had to go on in terms of DS's collection selection guidance. Another thing that the consultant stressed in that session was to be wary of, in general, the high-pressure, competitive schools because even though our kids tend to be good students, many times even academically gifted, those environments don't tend to be very supportive of kids who may hit rough patches or need accommodations. And then the kid's sense of failure that may develop in that kind of environment can lead to a level of self-recrimination and lack of confidence overall. That's one reason we sort of steered our DS away from schools like MIT, even though he likely could have gotten in, at least for his first year. He can always transfer if he comes to find he needs something more challenging, or he can save the bigger name school for his graduate school studies.
 
I've got the handout/slide print-outs from that IOCDF conference session around here somewhere. If you'd like me to send you a copy of it, feel free to PM me with an email address, and I'll dig them up for you.
 
All the best!

Anyway, on the immune system health, probably your PANDAS specialist tested for that. Look for the bloodwork for IgG levels, total and subclasses, and IgM/IgE/IgA total. Also look for whether your doc tested for other types of infections. There are many other tests that our immunologist has done on various immune parameters, but I guess IgG levels are probably the first and most crucial to look at initially.
 
For an immune system deficiency, if you have all the required pieces for the diagnosis, insurance may cover low-dose, replacement IVIg. I haven't noticed any posts on this forum where someone got insurance coverage for high, treatment-dose IVIg for PANDAS - it's usually considered investigational. Though, it could be that I just don't remember. (We did not get coverage even for the immune deficiency; insurance can be picky or it can depend on the luck of the insurance person reviewing the records.) What I don't know and might be important to consider is whether there are any autoimmune conditions for which insurance might cover high-dose IVIg - I'd like to know if anyone has any info.
 
On the college, I'd be concerned about starting even community college if he isn't yet set up for success due to his attention and EF issues. If he wants to transfer to a more challenging college later, he would still need great grades from the CC. That's what would have me leaning toward a gap year - or perhaps better, maybe taking only one or two CC courses at a time, just to keep even the barest intellectual stimulation - with the health excuse, until his ADHD issues are really handled in whatever way possible.
 
So sorry about all this. I hate PANDAS.

Just in support of Suzanne's note, my DS's college actually has a disability program specifically geared toward Asperger's students (at an engineering school -- can you imagine!?! ) In addition to appropriate accommodations, they will set up a peer mentor system so that the kids don't isolate, get behind in coursework, etc. And this is a "regular" 4-year, private university.
 
So these supportive set-ups DO exist, even if they may be somewhat unique.

I feel your pain, as we were in much the same place a couple of years ago. Fortunately for us, PANDAs hit our DS hardest when he was 12-13, so by the time he got to his junior and senior years of high school, his executive functioning and attention skills had improved/healed considerably, though he still needed a level of daily support and coaching. Following the PANDAs diagnosis, as we worked to get him back into school full-time, we were able to secure an IEP for him which, like a 504 Plan, gave him some accommodations with respect to workload, homework, assessments, etc., but additionally gave him access to a resource teacher and regular private and/or group sessions with the school psychologist to help him navigate remaining challenges in the school environment and build self-management skills.
 
Have you tried zinc for the attention issues? We found it helped our DS more than any ADHD med ever did.
 
College. First, you know your kid better than any of your friends or relatives, so I think you have to hold fast to your gut and do what you can to tune out their well-meaning, but potentially disastrous, advice. If you're not seeing signs of your DS effectively managing his needs at home, expecting him to just "step up to the plate" in an entirely new environment, without the daily supports you and your family give him, is likely a bit of a pipe-dream. Personally, I think your plan to apply to local schools and therefore have some flexibility as to whether or not he lives at home for the first couple of semesters and commutes to school, or go ahead and pack him off for the dorm, provided he shows signs of being able to manage that, is a good one. It gives everyone involved a sort of safety-net while also driving the ball down the field. While, in the end, a gap year may prove to be medically necessary, you do run the risk with that, I think, of halting any momentum you've been working to build up to this point. And it may be harder to restart it than it is to keep it rolling, if even only at a nominal pace.
 
I think you'll be hard pressed to find ANY colleges -- in NY or elsewhere -- that understand or have a plan for dealing with PANDAs. That being said, there ARE schools with disability departments knowledgeable about a lot of the PANDAS-related behavior sets such as anxiety, OCD, processing differences (including executive functioning), ASD, etc. The only way you're going to know what these disability offices are prepared for, however, will be to make appointments while you're touring the campus and meet with/talk to someone in the department. While IEP's (and 504's, I think) don't technically transfer into a college setting, many college disability departments will accept high school plan paperwork and documentation and, to the extent possible, continue on those accommodations and supports on campus. My DS's college, for instance, took his IEP documentation and agreed that: 1) the disability office would contact each of his professors to let them know that DS may need reasonable extensions from time to time, and 2) may choose to take his assessments in an alternate (quiet, private) environment. The disability office also helped us to apply and be approved for a private dorm room so that DS would have one less stressor (dealing with a roommate).
 
I don't know about an educational consultant in NY necessarily, but we attended a session at an IOCDF conference a few years ago about the college application and selection process for kids with anxiety/OCD, led by an educational consultant. She was excellent and gave us a lot of good ideas. It might take me a little time to dig it up, but I still have the hand-out (and her name) somewhere around here. If you think that might be useful, drop me a PM with an email address, and I'll dig that up and send it over to you.
 
In the end, the college transition isn't easy, but it was doable for our DS. We limited his search to schools that were within a reasonable drive-time from home, so that we could get to him, and he could get to us. We limited it to schools that had a reasonable teacher:student ratio so that he wouldn't be in a ton (if any) classes that were survey-style in auditoriums with 100-200 students and a single professor. We met with the disability offices and talked over what accommodations and supports they would actively provide or pursue. We got him a private dorm room (one such accommodation that required a letter from his doctor) so that he would have a "safe haven" to escape to or even melt down in, if necessary, at the end of a long day.
 
The first few weeks were tough. We had some tearful phone calls and FaceTime sessions. On at least two occasions, he even said, "I don't think I can do this." But we employed a little tough love. On top of encouragement and helping him think through solutions to some of his tougher moments, we also made sure he knew what the options were, i.e., if he threw the towel in on college so quickly, he'd be coming home to a different kind of lifestyle. He'd need to get a job and enroll for at least part-time classes at the local community college. There would be expectations. There would be rules. It wouldn't be a stress-free, free ride, even if he was "safe," at home.
 
And this is that critical point at which they can, and usually do (I hope) "step up to the plate." Our DS did. Things got incrementally better for him week by week. So much so that, by the holiday break, he couldn't wait for the second semester to start up again so that he could go back to school and hang out with his friends, talk to his professors, etc. He continues to gain life skills for managing in less than ideal circumstances, and he's actually happy and highly successful now in his sophomore year.
 
All the best to you. Take care!