Ports in Storms

 I mentioned how hard it is to get in to any clinics, which seems to be a universal experience. The best regarded clinic in the area is the Masonic Institute for the Developing Brain, affiliated with our major research institution. I called them last year about a neuropsych assessment and they weren’t taking new patients at that time. I called back again in June because my pediatrician referred us and I was hoping the referral would get me in the door. The scheduler was super kind but said they were not taking new patients for any of their clinics, even with referrals. Further, they don’t start medications until age 7.

In chatting with the kind scheduler, I mentioned how A’s behavior had shifted so drastically. When she heard that, she mentioned that they have a PANDAS clinic. The doctor there is taking PANDAS patients only. The scheduler booked an evaluation appointment with a LCWS for the PANDAS clinic, and maybe if A met those criteria, he’d be seen there. I didn’t know much about PANDAS, but A seems to lack some of the necessary criteria, like OCD or tics. I was insanely grateful that they’d offer an appointment, but I was worried it would be a waste of everyone’s time. Still, any port in a storm, right? So we went last week.

 The LCSW was amazing and kind and patient with us. She took a very detailed history, then asked about what we might be willing to do. Medication? Yes! New psychologist? Yes! She said she’d meet with the PANDAS dr, but that even if we didn’t fit in there, she’d find some place for us. I held my breath.

Well she did it. I just got the message that the psychiatry clinic is taking A. Their doctors have discussed his case and think they can help him. I should get a scheduling call sometime soon. I know this still might not work, but I’m so unbelievably grateful that we’re going to get seen somewhere that should routinely see kids with more severe needs. Hopefully this helps us down the path to some place better.