biomedqueenie-blog

[biomedqueenie-blog]

She’s in there!  Catching glimpses of the Nine-Year Old

I took Betsy to see Dave Card late yesterday.  The appointment was short and relatively straightforward.  The issues I spoke with him about were mostly related to yeast (drunken laughter, silliness) but some were PANDAS-ish (extreme jealousy, OCD, klepto.)  He felt very confident about the remedy after our discussion, and I have to say, I’ve been quite impressed. After administering the first dose, I had a normal nine-year old.  No endless repetition of the same phrase; no silly voice, no age-regressive discussions or behaviors.  Just... Betsy. I’ve heard they can kick in right away.  I’ve heard the change can be super rapid.  But seriously?  This was amazing.  Today has been pretty swell, too.  She’s on a higher dose (two, twice daily) and while I was thinking  maybe doing them upon waking and before bed, she was ready for one around noon. But she responded quickly and thoroughly again. There’s a Late Night activity for Activity Days girls, full of sugar and wildness, so I’m trying to prepare myself for her to probably come home hyper and yeast-tastic, but for now, we’re counting this first homeopathic appointment as a total win.

[biomedqueenie-blog]

Cabin Fever

We spent part of Saturday at my parent’s cabin.  We also went and spent the night Sunday and most of Monday (Memorial Day) there.  By the end, Israel was a bit of a wreck. I’m chalking it up (in part) to histamines, because they always make him have urinary incontinence, which he had in spades.  Let’s just say our departure was more abrupt than planned, and he was down to nothing but a shirt.  He’d been going commando ever since waking up, but then after lunch he had another accident, and so then he was only wearing his psychadelic lime-green shirt. Then, because what else is there for hands to do? - he’d occasionally playing with himself. Thank heavens it was only occasionally.  Because back before, in the moldy Provo house, it was pretty incessant.  And to top it off, potty talk was the only topic of conversation he really initiated, too, I swear. At any rate, he was also insistent, inflexible, and full of perseverance about everything; the more miniscule and ridiculous; the more insistent he was that it had to be just exactly so. So Monday morning (prior to the second accident, so at least he still had pants on) he’s upstairs cleaning up his Dominoes.  Which was a bit of a miracle to begin with, but then he insisted I come up, because he wanted to give me the Dominoes, but he couldn’t possibly bring them down to me.  You need to come upstairs, mom.  I will drop them; they’re too heavy.  If you don’t come upstairs right now I will drop them on your head.  One of the OCD tendencies that’s been occuring lately is the fear of dropping things if he has to do any extra work associated with moving or bringing or whatever.  And the bit about threats?  That shows up when he’s flaring, too.  It makes me so sad.  This isn’t who he is. Anyway, I’m out on the back porch, enjoying the sun and visiting with Meg and my mom, and he wants me to come upstairs so he can hand them to me, and if not, you know, he’ll just drop them down from the loft space and let them land on my head.  Pleasant thought indeed. I apologize/explain ti my family that this persistence, this inability to say,��“okay, I’ll bring them down to you,” is inflexibility and perseverance with a very specific plan he sets forth. Dad says something like, “No, that’s just being a kid,” And it made me so mad.  And so hurt.  And so misunderstood. There were so many things that made this trip hard.  Things that made it hard for me, but not hard for my parents.  Yes, they did a lot of the cooking.  And I appreciate that.  But I started putting Sam to bed at 7:30 and never got “done” with that til he woke up the next morning. I had no time where I was not Mom.  This is the cruelest, hardest thing for me.  Taking away my quiet Mickelle time is the hardest thing someone can ask me to do.  I slept on the floor in constant fear that he’d wake up and crawl around me and fall through the non-regulation slats of the loft.  It was a miserable night. I spent the next day lying on an air matress (upgrade!) and nursing Sam, trying to get him down for naps in a place with too much light, too many kids, and NO WALLS.  My Dad doesn’t want any electronics in the cabin, so I tried (really, really hard) to avoid using them.  Then I just gave up and hid it from him and felt 12.  That’s okay, sometimes he treats me like it so I guess we just have a really awesome relationship like that, Anyway, I know they’re going to want me to come back up, because, you know, it’s fun for them.  Even though it’s work, it’s fun.  And it’s fun for the kids. And sit there, dreading ticks, dreading nap time, dreading bed time, dreading the next time the kids wander in and tell me they’re bored and expect me to fix it, and I hate it.  And nobody cares.  Then we take home  dirty clothes and it’s all just a pain.  Also: I really, really hate not being able to get away for a few minutes with a cell phone or ipad.  I’m really not glued to it, but it’s how I cope.  It gives me a few minutes, wherever I am, to look at something that interests me.  Something that challenges me.  Something that, with biomed, gives me a little hope and makes me feel a little less alone in the world of PANDAS. I hate how he doesn’t see that.  I mean, I’m 34, he doesn’t have to know me backwards and forwards, but all he sees is a rule he wants because it will make him happy.  And obviously everyone else would be happier with his rules, too, right?  Of course right. I. Don’t. Want. To. Go. Again. I know that’s petty.  But there you have it.  I’ll be mature another day.

[biomedqueenie-blog]

How It Started -- How It Ended

We looked picturesque at church today.  It was 9:30, but we were on time.  I had makeup and felt like the picture of springtime in my pink polka-dot skirt with a crisp white top and bright blue cardigan.  Betsy’s hair was even curled.  Seriously, we never walk into church being mistaken for the IT family.  (Israel was sporting black pants, black shoes, and white socks, and Scott put Sam in an outfit two sizes too small.)  But for us -- it was the stuff of realistic dreams-come-true.  I’d even overcome my severe depression from the night before and was sitting next to Scott and snuggling him. We even made it through Sacrament without incident.  I mean, Israel wasn’t happy that we had to keep the sticker books etc. all away.  For that matter, neither was Avie, but it was well in hand. Scott, in an effort to be helpful (since he was leaving later that afternoon for a 4-day conference in Raleigh) took Sam out when he got loud -- 9:30 is breakfast-and-naptime for the kid, not sit-still-and-be-quiet time.  This left me with Israel, who was in rare form.  I mean, he’s SPD.  It could have been worse, and I ought to remember that.  He didn’t climb on my shoulders.  He didn’t jump off the pew.  But he was in and out of my lap, and I did repeatedly have to wrestle him a bit.  It was definitely not in the realm of neurotypical. Oh, neurotypical.  That word.  The way a biomed mom is constantly measuring her kids up, not in a prideful way, but in a questioning way.  “Is my child louder?  Less flexible?  More likely to cry and pitch fits?  Is he less engaged?  Seem to have less working memory?” Here’s the thing: most parents would look at my child and assume it was personality; assume, you know, he’s just built to be busier.  It’s who he is.  He just isn’t one of those kids that’s going to hold still. And, sure, that’s partially true.  But only partially.  Because also, it’s a problem.  It’s a deficit.  It’s something wrong in his brain, and it’s correctable.  And we’re going to get there.  I’m not giving up; I’m not going anywhere, and neither is my handsome, wonderful Scott. The meeting ended with me at my wit’s end BUT I was still in the building.  In the chapel, even.  As was everyone else.  Not even a single trip to time out! Sometimes, you have to re-evaluate dreams and have a realistic dream come true.  And the dream-come-true of the beginning of the meeting will look different than my dreams of how the family will look after sacrament meeting runs long.  But, for today we all made it.  And I’m going to celebrate that.  I have to.

[biomedqueenie-blog]

Bess has been stealing.  Little things.  From various places.  Stores, the courtyard in the middle of our apartment complex. I am devastated. But the thing is, kleptomania is a compulsion.  As in, the “C” of OCD. OCD is the result of brain inflammation in the basal ganglia.  It is a sign of encephilitis. This is not who my daughter is. This isn’t Bess.  It’s what’s happening to Bess’ brain.  And it’s my job to see who she truly is, to get rid of all the garbage in the way, and bring her back. But tonight, I cry a little.  And I feel so very, very, very lonely.  I can tell the whole wide internet what’s happening to my baby (which may be made easier because nobody on planet earth reads this) but I’d never dare talk about it with my family.  Partially because typing is easier than saying the words out loud.  And partially because I want to protect us both from those who wouldn’t understand.

[biomedqueenie-blog]

The Pace of Change

Part of being a BioMed mom is the optimism to search.  It means listening to other people’s story and knowing -- both for better or for worse -- that could be our kids.

So we’’ll try that crazy diet you said changed your boy’s attitude.

We’ll pick up the goldenseal and berberine that fights the strep.

We’ll take the B6 that fights encephilitis.

We’ll get the high dose DHA to help with speech.

We’ll do the magnesium baths, the foot deoxes, the cranial sacral therapy.

We’ll do our research, and we’ll go where it leads us.

This is what makes a BioMed Queen different.  We’re optimistic enough to try, and smart enough to watch closely, knowing the changes will be slow and painstakingly incremental.  But that’s a principle of lasting change, for now and for always, for biomed and for everything else: permanent change is slow.  And permanent change is a battle, with advancements and retreats.  Always.  But -- another principle, just as true, is permanent change is always worth it.

The Practical Application

Supplements are introduced one a time.  Dosages should be small -- half or less of what you anticipate a regular dose to be.  Children should be watched for change during the beginning.  These changes are not only related to physical health, but cognition, sociality, etc.  Biomed can’t be done haphazardly or without watching closely. Sometimes it will take a long time to see positive effects.  It’s like waiting to see a hole get filled in with dirt when you’re only using a spoon.  You have to hang in there and trust it. If you see negative side effects, remember that CAN be die-off.  There’s so many pathogens creating problems, from fungus to parasites, that you have to let it happen sometimes.  Reduce the dosage and continue on.

[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.

[biomedqueenie-blog]

Thus It Ends - Thus It Begins

It’s probably been close to a year ago now that I should have started noticing symptoms.  Or rather, seeing those symptoms for what they were. I should have noticed that the language Bess used to describe her feelings sounded an awful lot like depression.  I should have taken that frustration that I always heard in her voice, and realized that it was an awful lot like what one would expect from childhood obsession and inability to move on.  I should have noticed that her silly, overly-young sometimes hyper, definitely over-the-top-goofiness was atypical for her age. But it took me some time to see these things. And even longer to put the pieces together. And even longer to believe what I started to see.   Had it not been that her brother, Jordan, was manifesting SPD symptoms, which commonly occur with PANDAS as well, I never would have been tipped off.  It was only after extensive, extensive reading (and, frankly, overcoming much denial) that I came around to considering PANDAS. Over time, I became more and more certain.  I watched as she improved drastically on monolaurin (!!!!) and watched her handwriting deteriorate when I removed it.  Bingo.  That was it.  That was pretty un-explainable any other way. By THE GRACE OF GOD, I found a doctor who would test for PANDAS and take my insurance.  We’re not all the way to a formal diagnosis yet, but they’re ordering the blood work and she’s already tested positive for strep with the little swab test.  So that’s something. All my wondering -- all my trying to convince myself that, no, I was just seeing things that weren’t there -- I was actually a victim of my own research -- all that is being done away with.  Thus ends the self doubt. But the road to health -- thus it begins.  You have to have a diagnosis.  Even when it pricks at your heart, even when it feels like internal collapse.  Even then, you just can’t get better till you know exactly what’s wrong. So, here’s to a PANDAS diagnosis.  I guess.