PANS

PAN/PANDAS Resources to share with your team

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,…

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Medical Appointment Planner

I recently updated a health record journal that I published almost a year ago. It’s called The Personal Medical Appointment Planner: Be Prepared for Doctor Visits and Emergencies using a Health Record Journal.  I have been meaning to get the…

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What Doctors Treat PANS/PANDAS?

PANS and PANDAS are conditions that can be treated by several different types of doctors. If you are wondering what type of doctor to see, the answer is that it depends on the symptoms and severity of the condition. The…

Image with text What are PANS and PANDAS

What are PANS and PANDAS?

PANS and PANDAS are two acronyms that you may have heard thrown around, but what do they actually mean? What is PANS? PANS is short for Pediatric Acute-onset Neuropsychiatric Syndrome. It’s a disorder that can cause sudden onset of psychiatric…

Progress Report... Part 2

ARFID Progress and PANS/PANDAS Relapse (Part 2)

So a few months ago I posted about PANS/PANDAS Progress and ARFID Relapse. So now it looks like we have flip-flopped.  He had his last IVIG in June and then went into an eating disorder treatment center in mid-July. He…

Progress Report

PANS Progress and ARFID Relapse

We’ve been battling two different conditions of PANS and ARFID at the same time. One progresses forward and then the other goes back. Treatment for ARFID is now requiring that he abandon the successful treatment for PANS. So my son…

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IVIG Update

So I’m sorry, but it’s been a while since I posted. Funny how this whole PANS/PANDAS thing just changes every aspect of your life and now you have a new normal. Except that my son has had this most of…

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Finally, IVIG is Approved!

Not sure how it all happened. Honestly, I think it was a fluke. We went through so much to approve the original denial for IVIG to treat my son’s PANS (Pediatric Acute-onset Neuropsychiatric Syndrome) and PANDAS (Pediatric Autoimmune Neuropsychiatric Disorder…

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Dear Texas PANS Advisory Council:

I stumbled across information last year about the Pediatric Acute-Onset Neuropsychiatric Syndrome Advisory Council (PANSAC). The council is hosted by the Texas Department of Health and Human Services and has representatives from providers, legislators, community leaders, and parents.  Each quarter…

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One Step Forward, Two Steps Back

So to catch you up. IVIG was denied. The appeal was denied. So we are still in limbo. I pretty much spent the last two months working on the appeal to send to an external review. I spent so much…

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IVIG Denied

I feel like I am forging a path through the jungle. I have my machete, my bug spray, and a treasure map with a big “X” on it. But that’s it. No GPS. No voice telling me to turn left.…

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Our PANS and ARFID Story

Note: I don’t use his name because he’s an adult and he prefers to stay anonymous. No worries kid… I got your back. This is the story of my son’s long road to recovery. From what? At the time, I…