“Hello. It’s nice to meet you, but I wish I hadn’t.”
I usually joke and say that to any PANDAS Parents I meet. But it’s also true. I wish nobody had to deal with PANDAS.
PANDAS Sucks exists to tell our collective story about PANDAS/PANS. How it affects our children. How it affects our families. How it affects us personally and changes us. How it affects everything. How we ALL can heal and recover. We’re all connected. My story is your story, and your story is mine. Let’s tell the world together. Ready…1, 2, 3…GO!
My goal with this blog/web site is to let PANDAS Parents/Caregivers know they’re not alone, give solace, offer comic relief, and teach the world about PANDAS. I will likely say some of the things you wish you could say (and I’m not afraid to use some profanity!). I totally get the PANDAS journey, and what it does to your ENTIRE life. Too many parents still find PANDAS on the Internet at 3am when they can’t sleep because they’re worried about the changes they’re seeing in their child and finally connect it to a strep infection, do a Google search, and find PANDAS. (True story!) We need more doctors willing to diagnose PANDAS/PANS, treat the root cause of our children’s symptoms (infections and brain inflammation), and heal them. We’re getting there! A BIG THANK YOU to every PANDAS researcher and doctor out there.
Personally, my name is Sarah Jane Alleman. I’m a Mom to Jesse, an awesome boy that dreams of being an actor and director. My son was six years old when he was diagnosed with PANDAS in the fall of 2010. In hindsight, PANDAS very likely showed up back when he was a toddler, but it hit HARD in January 2010, which was about a month after he had strep throat. It was classic onset, but it still took over 9 months to get a diagnosis, and I had to drive that to make it happen. After a few months of bizarre symptoms, I found PANDAS on my own, like so many other families do, and my pediatrician at the time was skeptical to say the least. We did get the correct diagnosis after traveling out of state when I decided to stop wasting time locally. Jesse has done very well with treatment, but with PANDAS you have your light days and dark days. It is sometimes difficult to enjoy the good times, but always remember that the bad times never last.
In addition to writing the PANDAS Sucks blog, I am an active volunteer and medical advocate in the PANDAS/PANS Community. I was also the Director for Kentucky PANDAS/PANS Support,for six years, and I spent a year as the Social Media Manager/Technical Advisor for the PANS/PANS documentary: My Kid Is Not Crazy. I’ve worked on several other PANDAS/PANS projects to promote Advocacy/Awareness. I clearly wear a lot of proverbial hats, but ironically, I never, ever wear real hats. LOL!
I have my own PANDAS Parents Posse, a close circle of friends that live all over the country. I have even met some of them in person! I love and treasure those folks and truly appreciate their support. I’ve done a lot of healing for myself on my own too. I believe in self-care as an important component of caring for your sick kid. (Never feel guilty for taking some “Me” Time!)
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Thank you for visiting this Page. It is really nice to meet you,even though I truly wish you were not dealing with PANDAS/PANS. Feel free to message me here if you have any questions or need help finding help.
Here are some more random tidbits about me:
- I have background in Marketing.
- I love music and am a big Depeche Mode fan.
- I’m an Introvert (an INTJ to be exact), and I run The Introverted Chick and INTJ Female Instruction Manual.
- I hate to cook, but I own a ton of cookbooks.
- My dream trip would be traveling to see the Aurora Borealis.
- I attended Marshall University (Go Herd!) and the University of Kentucky (Go Cats!)
- I have 3 tattoos and plan to get more.
- I don’t have a favorite color.
- My favorite vacation spot is Clearwater Beach.
- I hate PANDAS, and I think PANDAS Sucks.
I like this quote by Thomas Edison: “If we did all the things we are capable of, we would literally astound ourselves.” Here’s to surprises!
Note: Please do not ask for doctor referrals or specific medical advice. This blog/web site is for info and support purposes only. I’m not a doctor.
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Sarah Jane Alleman/PANDAS Sucks
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