This page is full of my own thoughts, insights, strategies and… words. Words that you are so welcome to steal or rewrite and make your own. During our darkest days, I wanted to reach out to others the most. Yet, it was our darkest days that I was the most exhausted and mentally drained, and finding the right words for the intended audience (doctors, family, skeptics, acquaintances, good friends, etc.) was the toughest. Below are some things I came up with along with some tips that I sincerely believed helped move our journey from diagnosis to healing along more quickly.
This is a flyer I created in response to my son’s pediatrician treating our entire family like we were crazy–and sending us away with a referral to a mental ward. Read it. Print it. Share it with other doctors that are being jerks.
This is a similar flyer that I created to give teachers; we homeschooled (because we just always had) and I could not imagine the struggle of having to deal with this and get my child to school on time each day and successfully through the school year. I empathized with those that did and wanted to help by creating this flyer they could hand to their child’s teacher/principal/school nurse.
This is a letter I wrote to my team of doctors and nurses before our most recent IVIG in June 2019. I was truly grateful, but more than that I was employing my self-fulfilling prophecy technique that if I expressed my thankfulness for them being so empathetic and willing to press on with me to determine the underlying cause of Hudson’s flares, that they would step up to the challenge. I handed it out to 6 people in total and they all visited with me on separate occasions about how it had touched them and given them insight to what it’s really like to deal with PANDAS.
These are just some of the things that I learned along the way that made the researching/referencing part of dealing with PANDAS slightly easier. If you are in this struggle, you know more than anyone that time is not something you have any extra of–it is my hope that following these tips will save you time. More time for your child. More time for you. More time for rest.
-Create a new email address JUST for PANDAS stuff. [email protected] for example. This is essentially a folder that is always with you. When you are sitting in a waiting room reading an article online, email it to yourself here. When you are emailing friends and family mass updates about your child, use this email so you can go back and copy/paste the long explanation you gave when an old friend reaches out wanting to know what’s going on with your family after hearing about it through the grapevine. Compartmentalize–keep work email work, personal email fun/coupons, and create a PANDAS email for ALL THINGS PANDAS. You’ll be glad you did.
-Capture as much as you can with pictures and videos and create a folder in your phone’s gallery and instantly drag these photos here. As often as possible take the pictures and videos without your child knowing so they don’t feel so vulnerable and exposed, but these pictures will help you show doctors what your child may not display in the office and make explaining the severity of this to friends and family that much easier. Also take pictures of them post-PANDAS/healed/doing better to show the stark contrast. Take pictures of medicine bottles, screenshots of articles (especially facts that you’ll want to reference a lot, show your doctor or read to your child over and over to alleviate their concerns that they are all alone in this – -my son actually got much solace in articles and other testimonies because he could rationalize that if there was an entire article about it, it meant enough kids were feeling what he was to warrant an article and he liked knowing he wasn’t alone, he wasn’t crazy).
-Either sign up for the online patient portal option for each doctor and/or take pictures at doctors appointments of your kid’s weight and IVIG bags. Your pictures are automatically dated, which is great. You may want to check their math and reference how many grams of IVIG were given when your child was at X weight, for example. Having these pictures on the ready is what won my argument for our third IVIG that my son required 84 grams over 2 days and not just 80. The doctor actually told me the bags do not hold more than 40 grams. I was able to pull a photo of the previous year’s bag that was labeled 44 grams. I said “you either lied on this bag or you’re lying to me now.” Within an hour we had orders for the 44 gram bag my son’s weight called for.
-Make a binder. Simple–just get a binder and some dividers and label them: articles, handwriting records, photos, receipts, blood tests, notes, etc. Get a big binder, you’ll fill it quickly. That, and walking into a doctor’s office with this badboy shows doctors you are not messing around.
-On that note: STAY CALM and collected. And organized. And CALM. Doctors hate frantic parents and are equally, but for a different reason, scared of super informed and organized parents. Let your kid talk when they are willing. You may hear something from their mouths you hadn’t even learned yourself yet in the frantic routine that has become your new norm at home. More often than not, your kids can describe how horrible PANDAS is better than you can. Let them. And for the times when your kid is sitting silently and behaving perfectly for the doctor (maddening when you are describing their meltdowns and outbursts and the doctor is looking at you like you’re mad), you’ll have your binder to show concrete blood results. You’ll be able to flip to “photos” to highlight the difference a few months can make: Photos of your child winning awards next to photos of him/her lying on the tile floor. Pictures of your kid woofing down a Big Mac next to a tearful eyed picture of them unable to eat their dinner. Or even better, report cards and handwriting samples from before the flare and during. Remain calm. Show your proof. And do NOT say “I know this sounds crazy” (it’s not crazy, it’s real.) Say things like “if I wasn’t living this myself, I would have a hard time believing it. I would never wish this on your child, but can you imagine your bright, social, happy kid suddenly turning into someone you hardly recognize?” Keep eye contact with the doctors. They aren’t Gods. They’re humans, just like you, and they know your kid a whole lot less.
-Create a word document or an email you send yourself (so it’s available from your phone at all times) where you explain PANDAS to differing degrees, depending on who you’ll send that info to. Who is inquiring: your mother? Your boss? Your nosy neighbor? Your best friend? A co-worker that thinks their kid might be suffering from the same thing? You’ll get into different details with different people so make a short, sweet description, such as my explanation in layman’s terms here. Make a more in-depth explanation for family and your boss. And then spill all your guts in a third explanation, even if only for the therapy of it. You’ll likely hold on to this version for a while, but one day you’ll be at your wit’s end and just want people in your circle to know what you’re child is really dealing with and you’ll be glad you have this ready to copy/paste/send.
-Also, as awkward as I sometimes feel doing it, I’ve realized over the years that all my best friends and family totally get it and understand when I do a preliminary “health check” just before a playdate. It’s just too important to stay proactive not to. I simply text them something along the lines of “Hey! So looking foward to hanging out this evening. Just doing our usual ‘health check’ that is unfortunately the norm for us now. If any of you aren’t feeling superb or have just recovered from ANYTHING (strep, cold, flu, virus, 24 hour bug, etc.) it is ALWAYS in Hudson’s best interest for us to reschedule. We love you guys and can’t want to see y’all but have to keep his PANDAS at bay in every way possible. It’s that bad. PANDAS sucks. So hard.” I try to keep it light, but at the same time serious. And you’d be surprised how kind people are in return (I even had a friend once reply that no one was sick but she was disinfecting all surfaces just to be extra safe!). But also, sometimes people will respond with something that lets on that they still don’t entirely understand the magnitude of PANDAS. Responses like “Ben has strep, but he is already on his second day of antibiotics!” (as if that is okay!) or “We all were terribly sick last week, but we’re in the clear now!” (uh, not clear enough for us–see you next month!) After a few of these, the friends you hang with the most will get it and now I can just text “heath check! … ?”