Thursday, August 9, 2012

Is That Candy Mountain, Charlie?

As I pour through medical and mom-blogs about my son's condition, I become overwhelmed.  Tears fill my eyes as one mom recounts her thoughts as her son has a flare-up... "I miss my boy."  Honey, I know how you feel.

Overwhelmed.  Hell, who am I kidding.  I have already been overwhelmed about thirteen, or forty-seven, times today.  It was heartbreaking to see my daughter embarrassed by her babytalking twelve-year old brother.  It was painful to watch him sob because he didn't know how to chart his song for his electric guitar lesson.  It hurt when I was unable to clearly explain to my husband why he had to be treated with compassion when he screamed his head off over dying in a video game.

And mostly, it pains me to know that I let it go this long.  He was on the antibiotics... he was getting better.  Then he was off the antibiotics, and still on the grain-free sugar-free dairy-free expensive food diet, and he was doing okay.

Then, I got sick.  I rushed to the hospital (after negotiating with myself for a week)... but it wasn't strep.  Just a virus.  The doctor in Urgent Care said, "So, I'm not sure what you do when a member of your family is ill.  You know, to try and steer clear of your PANDAS child."

Ummmm...  we don't share cups?

I DON'T KNOW!!!  Holy creeeaper!  What do I do?  I boost up Chailyn's NAC, his Olive Leaf Extract, and give him Xylitol.  I try to rest and get better.  (stop laughing, I said "try")  But how do I, as a stay-at-home mom with a working husband and a younger daughter, "steer clear" of my immune-compromised son when I have the ickies?

In the meantime, I made an appointment with his pediatrician.  The nurse, I'm sure, didn't know the position I was in and could not get him in for a week.  The doctor was very understanding.  She listened to my frantic jabber about his newest tic (repeating things over and over- which my husband doesn't believe because he has never heard it first-hand), his age regression, his anger, and how he climbed a tree so tall the fire department had to come and get him down.

Then, she calmly wrote a prescription for two refills of augmentin... and told me to ALWAYS call at the very moment I think I see a flare.  Then she wrote down two homeopathic preventatives for when I have a slight inclination that there are germs around (or if we go to a hands-on museum or a water park).

Now, with our son on his antibiotic regime (plus the fish oil and the melatonin), and a tube each of homeopathic sulfur and oscilococcinum tucked into my purse for quick ick prevention, I feel like we are headed up the right path.

But that path ain't paved in gold.  No ma'am.  It's rocky, and it doesn't lead to the Big Rock Candy Mountain, Charlie.  I'll be happy if it just leads to Plainville.  A little plain-ville would feel nice right now.

So, as we gear up for September... which in homeschool terms means some classes resume and we get on a nice schedule (ahhhh), I am only hoping that all of this works.  At least helps.  Because it breaks my heart to see him losing friendships over his PANDAS flare.  Kids, while they often are MORE understanding than adults about tears and tantrums, still don't want to be around someone who screams.

Who would?

Well... I would.  'Cuz I also want to be around the hugs, the deep belly laughs, and the joy!  Wait, maybe that is Candy Mountain up ahead.  Everyone mount a unicorn.  What is life anyway if there's nothing interesting to see on the ride?

Friday, August 3, 2012

PANDAS, Marbles, Cappuccino and Me

Today has been a strange day, for many reasons.  Let me count the ways...

I woke up with a very painful hand, the softy part of the outside of my left hand.  Throughout the day the pain has been creeping up my arm into me elbow.  No, I didn't do something valiant, heroic, or even cool to injure it.  I leaned on it while holding a book to try and crawl my way over my daughter on to the bed so we could read together.  Yep.  Lame.  But it still hurts.

Second, I kind of felt floaty all day, like I was outside myself but not really.  This could be due to the double earaches, or the fact that I'm subconsciously trying to detach myself from the roller coaster that has been my son lately.

And that gets me to that part.  Two nights ago we discovered the wonders of melatonin.  We gave it to our normally nocturnal twelve-year-old and he was asleep within an hour, slept through the night, and got up before lunch time.  Needless to say, this new routine has been a slight adjustment.

However, it comes at a time when he is having an outbreak of PANDAS symptoms.  He has been highly volatile, experiencing age regression, straining to write (last night it took him a painstaking five minutes to write a six word sentence), and repeating phrases in babytalk.

"I want some ice cream.  I want some ice cream.  I want some ice cream."
"I gotta find my marble.  I gotta find my marble.  I gotta find my marble.  I gotta find..."  You get the picture.

I think I have a few lost marbles, too.

On the way to School of Rock, it was like Rage and Sorrow were embraced and rolling rapidly down a steep grassy hill.  Scream-cry-scream-cry-scream-cry for an hour and a half.  And that wasn't even me.  I spent the drive with one hand on the wheel and the other rubbing my overly-emotional son's neck.  This whole thing has been such a ride.

Oh, sorry... are you confused?

If you don't know us well, you may not know that my son was diagnosed with PANDAS (Pediatric Autoimmune Neuropsychiatric Disorders Affected by Strep.)  Essentially, he got strep at some point and it caused his antibodies to swell his brain, and his dopamine doesn't drive right.  See, all this stuff is linked together. New  PANDAS symptoms outbreak caused by the germies that are giving me an earache, earache possibly causing the floaty sensation, melatonin necessary so I can sleep and get healthy, yada yada yada.

And now I'm at a coffee shop while my son is at his first night of Nirvana Rock Camp, where he missed his first half hour because I wrote down the wrong time (which doesn't usually happen in my world).  In addition, I am writing on this blog, which I haven't done in a very very long time... and I am doing this INSTEAD of doing my actual writing WORK (that I get paid for).

"Well," I say, as I sip my honey cappuccino, "Let's just call this warm-up exercises and therapy rolled into one thirty minute session that ran me $3.21 plus tip."

I am learning to embrace our new family motto:  It is what it is.