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.
Has anyone seen any research on a connection between PANDAS and the DTaP booster and/or flu mist?
Here is our story...my 11 year old son has always been a normal, healthy, active kid. He received the DTaP booster and flu mist in early October 2010. Beginning in late October 2010, I found I was taking him into the pediatrician's office at least once a month with suspected strep but the test results were always negative.
Five months later, on March 4, 2011 he didn't feel well, again, we took him to the pediatrician...again, nothing. Then, the next day he began to cough and he did not stop coughing for almost two months. He had a racking cough that occurred every 10-20 seconds from the moment he woke up until the very moment he fell asleep. Nothing relieved his cough and it was so violent that, to make matters worse, he developed awful reflux. As a result, he was out of school for almost 2 1/2 months. He saw every kind of doctor (allergist, ent, gi, speech pathologist, psychologist)and he had a multitude of tests including an endoscopy/bronchoscopy, upper gi, chest x-ray, blood work for elevated titers, and asthma testing. He was on a ton of medications ranging from antibiotics to steroids, allergy meds, asthma meds, cough suppressants, muscle relaxers, you name it, and finally, our pediatrician thought it might be a tic and prescribed clonidine. Anyway, by the end of May he was back in school and was able to finish out the school year. I believe it was the clonidine and antibiotic shots that finally did the trick but I can't be sure. None of the doctors were willing to say it was PANDAS but I am convinced he had/has it. Now, I am beginning to suspect a connection between the DTaP booster and/or the flu mist. I was wondering if anyone has seen any research that looks into this?
