Advocating for Better

It boggles my mind, that we still have only have two major clinics treating our kids (at least publically) for this neuroimmune issue we have termed PANS and PANDAS, which begs the question – why? What is it about our kids that says to doctors and medical professionals “hmm, best not dig too deep on this one, give them XYZ medications until the parents move on and then we can all move on”?

Are my kids not worth the trouble? Do my kids not deserve to get the same respect and reverence as a child with say diabetes?

Seriously, what is it about our children that makes them seem not worth going to bat for?

It’s an interesting conundrum really when you think about it. Parents bring in a child who is ramped up, distressed, OCD with intrusive thoughts, or TICS that are debilitating or complex, low tolerance to stress, learning abilities shot to bits, challenging behavior, depression, super high anxiety and very often suicidal at a really young age, and it is typical for the family to be told: “hmmm, could be ASD, could be bipolar, could be ADHD, we don’t really know but let’s move you into mental health, perhaps some OT and we will see you periodically to do errr yeah nothing all over again”.

Most doctors first, of course, run rudimentary blood work, a CBC, CMP, maybe thyroid, cholesterol, even an MRI and perhaps an EEG, but what about digging deeper for the reason for this chaos when nothing obvious shows up? Why is no one looking for the complex clues? I like to think it’s a mandated time thing, not a – not wanting to dig deeper thing. We are waiting for them to say, “why is this child off the charts? What happened to this kid, why are they acting out, hitting their siblings, cursing at their parents, running away from school??” but they rarely do.

I don’t believe the majority think this is just bad parenting or a “bad” child thing either. Although there are certainly some that wonder if our kids just came out this way. “Sorry chaps, terribly bad luck, you just got a badly behaved child” or they think this is a genetic predisposition that is exacerbated by who knows what… but why, for the most part, don’t they show a spark of curiosity for chasing down the trigger?

Maybe the conversation in their head goes “whoa, I have no idea what this is but it looks complicated and confusing, surely psychiatry has a drug to dampen that down?” Or is it “whoa, I think I know what this is, but I know it is confusing and drawn out to treat, I know no insurance wants to cover the medications that help and there are no clear markers for what I am looking at, probably best to let the family move on to someone better who can spend the time looking deeper?”

I don’t know really, but I am on a mission to at least try and make it easier to access medical treatment where we live. As many of you know I am in the South and we are very limited here in terms of treatment options. However, after a full year of campaigning with some very, very awesome and cool parents, I am proud to say things are really looking up. One of our representatives has taken an interest in this campaign and we are hoping for an Advisory Council bill sooner rather than later.

Calm down now, it isn’t as sexy as it sounds, it is simply a bill that would allow for 18 volunteer professionals in this state to come together four times a year to brainstorm how to get the latest and most up-to-date information on PANS/PANDAS into the hands of every doctor, ER, school nurse, educator, and ergo parents, in the state. Five states so far have some form of legislation in this manner, another is very close, and 31 states (ours included) are on a mission to do the same.

In addition, those same very, very, awesome and cool parents have given up their precious time to beg, cajole, email, mail, ask, and present on this subject to anyone who will listen. It is working, people are listening, and we feel like we are winning. It feels good most of the time but today, I had my most liked/highest retweet ever, it said:

“Hate to be a downer, but life with PANS is hard. It’s hard on the whole family. it’s.so.hard to see opportunities lost, kids & parents feeling so inadequate, feeling odd/different, feeling like a failure. All because egos got in the way of a medical dx ?#PANS”

Up to now, I was sure my biggest tweet would be down to my sparkling repartee or stinging wit, but no, it was this. I thought wow – I post and retweet studies and statistics and advocate for treatment and care, and I love to retweet those who do what they do to make stuff happen. I follow and retweet all my heroes and all my legislators, I @ and hashtag all day long, but this, this is what gives me my most positive reinforcement Twitter moment ever (I am like Pavlov’s Dogs).

I guess today wasn’t tough just for us (#schoolrefusal, another day school seemed too daunting to even go). As PANS/PANDAS parents we ALL try so hard. We are ALL fighting for better but sometimes I know there are moments that we all just long for normal (not even going to say “whatever that is”, because truly in our hearts of hearts, we know what it could look like and we know that’s not what we have). Anyway, tonight as I sip my wine, I revel in the glow of my 10 likes and 8 retweets (hahaha move over Ellen DeGeneres (Verified account) @TheEllenShow with your 77 million followers – I got 10 LIKES – beat that baby). Tonight, I am a Twitter rock star … (#itsthelittlethings)