Welcome to Day 1 the “12 Days of PANDAS Sucks”!
Every day from December 25 – January 5, you can expect to see a blog post from yours truly. You probably won’t be able to sing the days as a song, but I think you’ll still like it. LOL! However, I will be posting a different version of the song “The 12 Days of Christmas” on each blog. For Day 1, check out Reliant K’s rad version by clicking here. It’s one of Jesse’s favorite Christmas songs, and he says “On a scale from 1 to 12, I give this song a 12!”
On this first day of PANDAS Sucks, I have ONE WISH for you and your entire family: a Merry Everything and a Happy Always.
I know that the holidays can be difficult when your family is dealing with PANDAS/PANS. Heck! Every day can be difficult. Your day can go from glad to bad in seconds. You never know if you’ve had an awesome day or an awful one until it’s over. And you can have a string of bad days in a row that make a good one seem like an oasis. Or you can have a string of good days in a row that make a bad day seem like a horrible crisis. Basically, PANDAS/PANS is 100% predictable in that it is 100% unpredictable. Sigh. But I do hope that you and your family find some peace and calm during these holidays. Not a day goes by that I don’t think of all the other PANDAS/PANS families dealing with all their stuff, no matter what kind of day I’m having. I’m so thankful for your support, and I hope that you know that you have my support. Wishing you a Merry Everything and Happy Always!!!
On this First Day of PANDAS Sucks, I also want to give a major shout out Dr Cleary and Dr Agalliu. Their research gave the PANDAS/PANS Community an early Christmas present when it was published in the Journal of Clinical Investigation on December 14, 2015. The paper “Group A Streptococcus intranasal infection promotes CNS infiltration by streptococcal-specific Th17 cells” was not in my letter to Santa Claus, but I was ever so thankful to receive it!
Dr. Cleary and Dr. Agalliu (and other researchers) discovered how immune cells/auto-antibodies triggered by recurrent Strep A infections enter the brain using the found that immune cells reach the brain by traveling along odor-sensing neurons in the nasal cavity versus directly breaching the blood-brain-barrier (BBB). These findings could bring improved ways to diagnose, monitor, and treat PANDAS. It would be great if the research could expand to show how PANS triggers also travel along this same pathway and how to identify children that may be more susceptible to the conditions of PANDAS/PANS. We’re used to taking baby steps when it comes to research, but this seemed like a giant leap for PANDAS/PANS-kind. It’s just so exciting to finally have some research to point to when naysayers doubt the existence of PANDAS. You can read the full article for yourself here OR read an easy to understand summary here OR watch Dr. Cleary and Dr. Agalliu explain it in this YouTube video.
Again…wishing you a Merry Everything and Happy Always!
P.S. I’m posting this Day 1 so late because I idiotically took my medications/supplements on an empty stomach. What happened is that I misjudged how much longer it was going to take me to finish preparing our dinner and took my meds before I should have taken them. And the fact that the kitchen was about 1,000 degrees because of all of my cooking and the weirdly warm weather we’re having did not help either. I got kinda sick and was down for the count for a bit today. The boys ate without me while I nibbled on oyster crackers and tried not to throw up (which I didn’t–whew!). I wish I would learn this lesson already: NEVER TAKE YOUR MEDS/SUPPLEMENTS ON AN EMPTY STOMACH! Geez. Other than my medication mishap, we had a pretty nice holiday here.
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Sarah is a PANDAS Mom to her awesome son, Jesse. She spends much of her time on Facebook, making to-do lists, and listening to music, especially Depeche Mode. She drinks a lot of coffee, likes a good red wine, and has been known to hide chocolate in her pantry. Sarah really thinks PANDAS Sucks (the autoimmune disorder, NOT the bears!). PANDAS Sucks exists to tell the collective story about PANDAS/PANS. Sarah wants to empower other PANDAS Parents and let them know they’re not alone. See also Facebook, Instagram, Twitter, and Pinterest.
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.