#PANDAS bloodwork meltdowns

[biomedqueenie-blog]

Bummer.

So, the insurance didn’t approve the Cunningham panel after all.  Soooo bummed. The blood draw was an event of epic proportions.  DH took Jeru and Bess, and I hit up the 75% off sale @ Barnes & Noble.  I really didn’t expect it to be a very big deal at all.  We’ve been trying to let the kids flare without any interventions, so they were a bit ..um... dramatic, but you know, we did one back in January without losing life or limb. But apparently it took DH and three nurses to make it through the blood draw.  Reports are mixed, but DH says they filled 10 vials of blood on each kid. When I finally picked them up, it was Aveline who was in the car crying like a banshee.  The other two had gotten AWESOME PRIZES and she hadn’t.  The crying went on for half an hour (#PANDAS #sorrykidyourturniscomming) which is totally unlike her most of the time. As to whether or not the lack of Cunningham will impede a PANDAS diagnosis, that’s kind-of in the hands of Dr. V.  He doesn’t HAVE to have that bloodwork, but it does make it much easier and clearer.  (But at $1000 per kid, it’s just not happening.)  I trust him more than any other doc I’ve ever taken the kids to, so there’s that. The bloodwork should be read by the end of this week/beginning of next, and then we’ll see the doc again next week.  I’m especially excited to hear what the mold and lyme labs say.  I’ve been praying they lab techs will be careful, consciencious, and accurate, and that the results will be correct.  Lab Corp gives false negatives more than half the time, but the insurance wouldn’t cover any other lab. At any rate, now that the bloodwork is done, we can start them on some supplements to help get the strep reigned in.  Berberine, goldenseal, olive leaf, oil of oregano -- these are supposed to be some of the best.  Oh, and Lauricidin.  Maybe Israel will stop throwing puzzles on the floor without completing them and Betsy will be able to go to sleep at night.  Maybe.  In a few days...?

[biomedqueenie-blog]

The Wait

So, last week I took Bess and Jeru to the doctor.  By the grace of God -- no, seriously -- by God’s grace and goodness, we found Dr. Voss.  And I can’t explain it, because I’d called his Springville office before, and there had been a six-month waiting list, but we got an appointment for just a couple days after the phone call.  He’d just opened a clinic in Lehi, which is closer to us, and I guess they were still kinda getting up and going.But it gets better.  He takes our insurance!  Seeing a DAN! MAPS or PANDAS doc is always expensive.  Always.  And, like, NONE of them take insurance.  ...Except Dr. Voss.  He even has a part of his website dedicated to his pro bona work.  If you don’t make enough money, he’ll give deep discounts or free treatment.  How many doctors DO that?  Seriously, this man is gold.Anyway, it gets better again.  Because they know which labs to run (!) and won’t fight you on them. (!)  If you want additional labs, they’ll discuss why, and then run them.  It’s like you get to be an actual contributor in the process!

It’s amazing what a difference a good doctor can make.  I’m insanely jealous that I can’t go see him, but even though the kids have this CHIP insurance, which apparently will cover way more than I thought it would, I don’t.  I have the crappiest of crappy medicaid.  It does nothing.  It covers nothing.  It’s called PCN and the first clinic I went to, the nurse flat-out told me they say it stands for “practically covers nothing.”  Then she told me it didn’t cover my symptoms and sent me on my way.  

But at least the kids will be healthy!  Someday!  Maybe!

Well, at least they’ll be diagnosed.  Health will happen, I know it and I trust it.  But it might take some time.

Strep cultures came back on both kids; positive for Bess.  I wasn’t surprised, but I was.  I was shocked.  I mean, I knew she had PANS, but PANDAS?  With reoccuring strep?  Did not see that coming.  It was vindicating and heartbreaking -- celebratory and devastating. I required both quiet time and tears and lots of “hurrahs” from my husband.  (”Tell me I’m amazing.  Because I am.  Nobody else would have figured all of this out.  Most other moms would have just thought their child was moody or having perpetual bad days, or just had that personality, or whatever.  So tell me I’m amazing. Because I knew that’s not who Bess was at heart, and I figured it out, all by myself.  And we will help her, and she will be happy. Because I am her mom, not one of those other ladies, and I figured it out.”  “You’re amazing.”  “Somehow that doesn’t feel like quite enough.  Throw me a parade.”)  

I know a couple of people -- people who love me, people who love my children -- who think I’m overreacting.  Who can’t see that these aren’t typical, garden-variety meltdowns, but actual trauma;  who can’t see the times Bess has cried herself to sleep worried about us not having enough money, even though there’s no need to worry that much; who haven’t seen Jeru throw open the front door, run from the house crying, sobbing, screaming, utterly inconsolable for his father (who had just gone to work, like he does every day) and literally sob as if the man had died and would never return again.  Or when he stops in the middle of the hall, crying real tears, saying he can’t walk anymore, that it just hurts too bad.  They don’t see when Bess is unable to be happy.  Like, literally, unable to find any happiness in anything.  Is even unable to just be content, or average.  She’s only able to see limitations and frustrations and let-downs.  That’s not normal.  That’s not heatlhy.  She’s not healthy.  Neither is he.  My poor girl.  My poor boy.

They don’t see it.  They just see kids who are relatively content and happy in front of others for short bursts of time.  So obviously I’m an overreacting hypochondriac who has taken her children off food coloring, gluten, and dairy just for kicks.  I mean, it’s so easy to have a restrictive diet, right?  So easy to cook for them, so easy to always tell them no at the grocery store, so easy to take them to public parties and outings... I’m obviously not doing it because it has reduced symptoms by over fifty percent; I’m doing it because it’s a little party.

The bloodwork is all in the process of being organized.  There’s a lot of legwork that goes into getting it all approved and orchestrated -- lyme labs should be sent one place; other labs go somewhere else; some labs are covered; vitamin D is not, etc.  So we’re waiting.  And while we’re waiting, Miss Bess is floundering a bit with her strep flare.  Jeru has been catching it from her and getting a little more difficult every day.  Meanwhile, I’ve had to take them off all supplements, because I want the labs to reflect exactly how they are in typical form, not when I’m piecing them together.  Because sometimes the piecing works, and sometimes it doesn’t.  So we flare.  And wait.  And I find myself with (ahem) unpleasant strep symptoms located outside the oral region.  Paaaaaaaartaaaay!  But it’s so much easier to be patient when you know the labs WILL be run, and (other than vitamin D!  What?) will be free. One step at a time.  One doctor at a time.  One blood draw at a time.  One diagnosis at a time.  One drug at a time; one supplement at a time.  One smile at a time, one laugh at a time, one symptom-free day at a time; one beautiful thing after another.  I tell myself.