So it’s been a hot minute since the last few blog posts. Like a year! Honestly, life is crazy, and things got away from me.
But this one is really important. I post and comment in several PANS/PANDAS Facebook groups, and one of the most frustrating things I hear is that my doctor doesn’t know anything about P/P.
Some have providers who are willing to learn about P/P but most do not. Doctors don’t have time to figure it all out on their own or do the research to find relevant information to help their patients at that moment. Like when you are sitting in the exam room with your child, who is having their fifth flare-up this year.
We have wasted so much time. And the longer you wait to treat, the harder it is to get positive results. My son’s symptoms started as a toddler, and he was not diagnosed until he turned 14. By then, he had all the symptoms for over ten years. We just didn’t know what it was.
Getting the word out
I have also recently had a few friends approach me, asking if the problems their child is having sound like PANS/PANDAS. And so far, the answer has been a resounding YES!!!
But then what? Their doctor knows nothing beyond testing for strep and then treating it. They need our help too.
I created a new resource guide especially for you to print out or download to your device and share with your child’s team. And because we are not only trying to help our child’s medical team but also their educational team, there is a page for educators too. Most teachers don’t understand the behaviors or how to help our kids.
Keep it simple
There is one page each for medical and educational resources. The page itself has the very basics. But the value comes from the links and QR code. A medical provider or teacher can just take a picture of the QR code to link to a special resource page later, when they have time. But there is also a link that takes medical providers straight to a diagnosis and treatment flow chart that can be used during the appointment.
The QR codes link straight to a resource page that contains to-the-point information about diagnosis and treatment, CME educational resources, and organizations for P/P who support and train doctors. Then, at the end of the page, are a few videos. Some are short and to the point, and others are longer with evidence-based presentations by the top P/P experts.
The education page links to free handouts for educators, websites, and even a virtual in-service for schools. There are so many great resources for teachers, administrators, and school nurses.
Please Share!
This shareable guide is just one step toward getting the word out there. If our pediatricians, urgent care providers, and ER doctors can recognize the signs at the onset, it could prevent this disease from becoming chronic. Imagine that! It may be too late for many of us to get this easy of an outcome, but it can prevent so many others from having to go down the same chronic path we have.
And if you need more expert help than what your current providers can do, please don’t waste any time and find a P/P expert. Check out this post for all the ways to find a provider who can help you.
