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?


  1. Thanks so much for sharing the hard parts of your journey. This brought tears to my eyes. Parenting is hard work. Parenting a child who doesn't fit the world's view of a child is so much harder. The tug of feelings within oneself, with one's partner, and with one's child are difficult to express because of their shifting nature and because of our reluctance to admit that our own feelings aren't always bright and happy. Thanks for a clear description of all that. Love to all of you,

  2. All I can say is that we're having an "interesting" summer, too. I hope an pray it gets better for you an your son.

  3. Thank you for sharing. Things like this need to be shared more.