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We finished the 3 week intensive program at Rothman 9 weeks ago today. It felt like a good time to share that we have seen amazing results. DS 13 has struggled with school anxiety and refusal (which also extended to summer camps) since sudden onset of PANS in June 2009. We've been able to resolve or improve many other symptoms with medical treatment, but this one just wouldn't budge. Last year, between Mono and school refusal, he missed about half the school year (including the last 6 weeks of school when he didn't attend at all), and we were beginning to think that he wouldn't be able to continue in a traditional school setting. Since seeing Dr. R for 3 weeks at Rothman, ds has gone to school every day for 8 1/2 weeks. There have been a few bumps along the way - especially in the beginning - and he's only made it in for 1/2 or 3/4 of a day a few times (maybe 4 days) due to anxiety. But on the whole, he seems to be on track and is feeling very proud of himself! As always, there have been a few potential obstacles to success - lots of homework, a mild concussion that's given him headaches and nausea, and kept him out of P.E. and recess the last few weeks, a new boy who's a bit mean - but he has pushed through all of these problems and we are just thrilled. In addition, we spent the first couple of weeks of therapy working on ds going to bed by himself, I think as sort of a practice run for the bigger issue of school. He has never gone to sleep without one of us in the room with him, but since seeing Dr. R. he has been doing it on his own. Dr. R (and I know there are other excellent therapists there) is absolutely incredible. I really don't know how he does it, but all of us learned so much. I think he was working on various levels of the problems simultaneously - talking about it, educating all of us on a more intellectual level, confronting Alex about behaviors, encouraging him, reworking routines for more consistency, doing gradual exposures with the bedtime routine, bringing up buried emotions, etc. I wanted to post this in case there's anyone on the fence about going to Rothman. I spent almost a year deciding whether to make the trek out from California, and my only regret is that we waited so long. Thanks so much to all who recommended this program to us and took the time to post, answer my questions, and talk on the phone with me!
A good friend has recently brought to my attention that our ds presents with ADHD. She's researching it because her son has been diagnosed and they are trying to go the medication route. We are planning to have ds evaluated specifically for ADHD because I've begun to wonder if a) this issue and all its consequences are contributing to his school refusal and it is just becoming more obvious now because his workload and other responsibilities are increasing significantly now that he's nearing the end of 6th grade. I've always been more focused on the underlying cause than symptoms, and we are continuing to work with a LLMD/DAN doc, but the school refusal has us on the brink of pulling him out of regular school, something neither he nor we want. I'm just wondering if others who've dealt with school refusal ever felt there was an ADHD connection - as in they are anxious about being at school because they have trouble doing their work while other kids seem to have no problem and get in trouble for talking, getting up during class, impulsive behavior, etc. I've heard most people talk about OCD as the primary problem that prevented kids from getting to school, but now that we're looking at this closely, I (as well as my friend and two of our teachers) feel that the ADHD issues could be causing some (possibly most?) of the anxiety around going to/being at school. Other things that make me wonder if ADHD is the primary problem contributing to school refusal are 1) his separation anxiety, which was severe at the beginning of PANS isn't much of an issue any more. He stays home alone, goes on overnights, and has no problem saying goodbye to me in most situations. 2) We tried Zoloft last Fall for the anxiety and it had no effect, except to cause intrusive thoughts once we upped it past 6mg. Thoughts/experiences would be much appreciated!