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I've been conversing with a few other families off-line over the last couple of months as we prepared our DS for the transition from high school to college, and I thought I'd drop a note here in the event some others are staring down the barrel of college decision-making. I also wanted to make sure and thank a few of you who tread this ground before us -- most especially Emmalily -- and gave us some great advice! Thanks!

 

So, for quick background, DS was likely "a PANDA" by the age of 3, but we didn't know, nor did we get any help with medical interventions, until he was 12 -- almost 13 -- and headed into 7th grade. He became so badly debilitated, however, that he went from fully functional if quirky to completely non-functional within the space of about 3 months. Finally, after almost two years of abx, lots of therapy, continued supplements, and tough love, DS returned to functional and managed to close out his senior year in high school summa cum laude. He continues to battle a degree of OCD and anxiety, particularly when under stress and/or transitioning to a new, unknown situation, but for the most part you wouldn't know he was any different from most bright, healthy kids.

 

In our college search, thanks to some great advice by knowledgeable folks like Emmalily, we knew we wanted to find a college that: 1) offered a low average student-to-teacher ratio; 2) was within a reasonable drive from home; and 3) had a disability office that was readily accessible and pro-active, as well as, of course, offering the programs that DS wanted to study. One very valuable tool we also made use of was a chance for DS to participate in a short (3-week) summer program on a college campus the summer between his high school junior and senior years. It gave him the experience of living on a campus, keeping his own schedule, living and dining among peers, getting himself to class, etc., and we think that it had an invaluable positive impact on his confidence and coping when it came time to actually leave home for the real thing.

 

We found his "dream school" about 1 hour away from our home with the curriculum he wanted (computer engineering). It's a smaller school with a lower student-teacher ratio (9:1) and a readily navigable campus. DS attended two, short, on-campus "readiness" events -- a scholarship weekend for interviewing for a variety of scholarships and a summer orientation session -- that once again added to his confidence that he could manage living on campus. We made advance contact with the Director of the Disability Office for the school and provided her a copy of DS's IEP as an example of the sorts of accommodations (extended time on assessments, etc.) that had contributed to his success in high school; she was very accessible and communicative and assured us that his accommodations could be met on campus via the Americans with Disabilities Act and that she would notify DS's professors. She also offered a "mentorship" program whereby DS would be "matched up" with an upper classman on campus to help him get in the swing of things. DS has had two brief subsequent one-on-one meetings with her since he's been on campus, mostly to fill her in on his classes and professors, to reconfirm which accommodations, if any, he feels he needs given the nature of the material and the teaching styles, etc. and to introduce him to his mentor. In short, she's been great -- available, but not intrusive.

 

So, DS has been on campus since mid-August, and he's doing great! That's not to say there haven't been ups and downs . . . moments when he called me to say he didn't like this (the dorm showers) or felt uncomfortable with that (some social activities designed by his RA) . . . but he's figuring it all out. He likes his classes -- actually loves some of them -- and, knock on wood, is keeping up. He's making some friends and making peace with the parts of college/dorm life that he'd prefer weren't parts of the picture. In other words, he's adapting.

 

Thanks again to all of you who've helped us on this journey, and here's wishing all of you happy and safe transitions as your kids continue to grow!

 

Nancy

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Thanks so much for posting this. DS is a senior in HS this year and just applying to schools. Does your DS still become clearly symptomatic when in the presence of strep and, if yes, what plans does he have in place for recognizing the onset and seeking treatment? Our biggest concern is that DS doesn't seem to be aware that he's begun a exacerbation. Our other major concern is that DS doesn't ever feel hunger and has few preferred (tolerated) foods. He is an extremely low weight highly selective eater who stops eating altogether when in the presence of strep. We can easily see him dropping instead of gaining his freshman 15. Any additional advice would be great. Thanks - Suzanne

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Suzanne (BigMighty) --

 

Our DS does generally recognize his own exacerbations though he is not reactive to strep anymore, that we have seen (matured immune system, maybe?). His biggest medical triggers in the last couple of years have been allergies (mold and pollen), so when those kick up, he knows to go back to his OTC allergy medications, and we increase his quercitin supplements, also, in an attempt to fend off the excessive histamine production that can drive inflammation.

 

Also, we are in fairly frequent touch via text and FaceTime; the FaceTime, especially, gives us a chance to see how he's looking, so were he to develop any tics or other obvious signs of exacerbation that he was attempting to hide, we'd still catch on, I think. Largely because of the whole PANDAS journey, though, he's very communicative and open with us, so I think if he was unsure as to whether or not something was a sign of an upcoming exacerbation, he would talk to me about it.

 

As for the food thing, I think pretty much all colleges require incoming freshmen living on campus to have a meal plan at the college cafeteria and ancillary eateries, and they do tend to cater to young tastebuds, from what I've seen, as well as having salad and yogurt bars and the like, so I would think there'd be something there your DS would eat, even if his diet was very repetitive. But since food is a big issue for him, including the cafeteria and other on-campus eating spots on your tours would definitely be an important piece, I would think. Also, most schools make available to rent, or you can buy your own and bring, mini fridges and microwaves, so if there are some nutritious staples your DS could keep in his dorm room and eat regularly, I would tend to just stock him up, and maybe let Amazon keep him stocked if you're too far away to bring or send him regular "care packages." Our DS is a bit picky, also, and especially doesn't care at all for conventional breakfast foods. So I stocked him with Clif bars and dried fruits and peanut butter and other items that he'll eat willingly and that aren't so much trouble that he'll just skip it, either out of time constraints or sheer 18-year-old laziness. <_<

 

One other thing I forgot to mention in the original post with respect to helping DS maintain his health on campus . . . one of the accommodations we went for (with the help of our psych) was a private room accommodation; it was granted, so while DS lives on a hall with about 20 other freshman boys and an RA, he has a private dorm room, which we are thinking will help him maintain both his physical and mental health, at least for this big, transitional freshman year. In addition to not having to worry about strep or other illnesses spreading from a roommate to DS, it gives him his own space to come back to after a long day of classes and labs where he can do his own thing and continue being social only if he chooses to, rather than out of necessity with a roommate in the same room. He may make a friend there this year and they may decide to be roomies next year, but we felt that giving him this safe, decompression space initially was a good way to go.

 

Good luck!

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DS's doc insists that he have a single room, also. DS has a CVID and and IgA deficiency so very little immune function. Glad to hear that this seems to be an acceptable solution for your DS. Not yet sure how mine feels about it. Thanks for the report. We have been planning on regular deliveries of nutrition shakes and such. Seems like we're on the right track. Hope we get to a place where DS is not strep reactive anymore also. Congrats to your son for making the transition!! Very happy for you.

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I loved reading this update. So happy for your son. Gives me hope that mine can go off to college and have a normal college experience like others. My son has also reached another educational milestone. He went off to middle school last week. He reports he loves it. We were holding our breath. He was placed in the academically talented program and that required him to go to a different middle school,away from all his friends and the kids in our neighborhood. He has been able to deal with all the bumps that go along with middle school, so far. He came home laughing yesterday and telling me he accidentally went into the girls bathroom, lol.

 

Hooray for your son. There is a light at the end of the tunnel.

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MomWithOCDson,

 

Thank you for your post. My daughter has had PANDAS since 7th grade. She is a senior and we are currently applying to colleges in MD, PA, and VA. She wants to be a doctor so we are looking at PreMed programs. Although I'm not sure that she has the stamina given that she currently attends high school part-time, I need to support her dream.

 

You said that one of the criteria that you used to pick colleges was "had a disability office that was readily accessible and pro-active." How exactly did you determine that? Phone call, we sites? College visits? If you spoke to someone in the disability office, what questions did you ask?

 

How is your son doing in college? Have his symptoms subsided? Has the disability office provided accommodations? Do they help? Is there anything else that you suggest I do when selecting a college?

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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!

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