From Barely Moving to School and Dance: Overcoming PANS with Arbor Health

Before we found Arbor Health, we had been struggling for two full years to try to figure out what was going on with our daughter, who had suddenly started exhibiting symptoms of OCD and restricted eating pretty soon after having COVID during lockdown. At the very start, a friend shared some information she'd found about PANS and said, do you think it could be this? And we took it to the doctor here in the country we live in. And they immediately dismissed it. And we were in such a crisis mode that we didn't follow up with it and just tried to get by for the next two years. And it was very hard. She would go through what we now know are flares, but we didn't know that at the time. And she would make some improvement in between. But then every time a sickness would hit, everything would go downhill again. It was a real struggle to be heard and taken seriously until we found Arbor Health. We tried so many specialists, so many psychologists, so many doctors, and things were just getting worse and worse and worse. And at the point where we finally found Arbor Health and decided to make this trip across the Atlantic. If there was anything that would have prevented us from getting started with Arbor Health, it was just the fact that we were so far away at that time and getting to them required a lot of effort. But as soon as I spoke with them on the phone, the first time I knew that we'd made the right choice. My daughter's team at Arbor Health was with us every single step of the way. This is a long term treatment. It's not something that you just treat and it's over in a week. You know, everyone at Arbor Health was so willing to listen to our concerns and check in to see how things were changing and also to celebrate the victories and to remind us how far we'd come, because it is a long term treatment and it's really helpful to have people saying, oh my gosh, do you remember where you were two months ago? Three months ago? This is progress. It's another world. It's just unbelievable. I will just never forget the moment we walked in the door of Arbor Health and it feels like a home. It doesn't feel like the doctor's office. And our daughter was sitting on the carpet and our practitioner walked in, and rather than sitting in a chair, she got down on the carpet with our daughter. Spoke to her on her level, made us all feel so at ease. This is after we had been. We had spent two full years trying to get an answer and be being brushed off and not heard. Within ten minutes she said, this is a textbook case of PANS and you can get better. Since we started with Arbor Health a year ago, the change is just almost hard to describe. Like she back then, was barely able to move. She wasn't going to school. We were all at home just trying to take care of her. Today she is going to school, she's singing in the choir, she's riding horses, she is going to dance. A year ago, we would have been happy if she could have walked around our house. And now she's going out in the world and doing all these things. She's just being a normal 13 year old. If you're on the fence about working with Arbor Health, I would say don't be, because it's so hard to imagine another place where you would get the comprehensive care with the expertise from both psychology and physical medicine, and combination and thoughtfulness about how it all goes together. My only wish, honestly, is that this resource is available to more people because we're in another country, in Europe, and I see some of the parents in these PANS/PANDAS groups that I'm in, struggling so much to get the kind of help that I feel like we were so lucky to have found in Arbor Health. And it's just a travesty that it's not more widely recognized and that this kind of help isn't available to everyone with children in this situation.