And....the winner is STREP

We are going on week 4 of non-compliance.  I visited the Urgent Care with Hunter on 4-23 with the suspicion of Strep due to the urinary frequency, bed wetting, acute behavioral change, sandpaper rash on his chest, sore throat, headache, inattention, and fine motor decline (writing).  The Dr that we saw was actually the Medical Director, and he didn't want me leaving without a script.  He recommended to treat him, based on his symptoms.

I didn't listen.

I chose to go by the "oath" we took when we started IVIG treatment, that we wouldn't give antibiotics without a positive culture.

I didn't fill the script.

Fast forward a few days.  Paige's anxiety heightens, she doesn't want to leave the house due to the fear of vomiting (no clinical symptoms), and we see the non-compliance continue.

My parents arrive for Hunter's First Communion, which he miraculously completes, and we enjoy a "yes" weekend surrounded around Hunter's choices.  It was a beautiful moment to see him accept the body of Christ...and choose Jesus.  He chose redemption.

Sunday night, Paige told me her throat hurt. After a busy weekend and state testing scheduled for the next morning, I told her it was probably allergies.  However, in my mommy heart I knew what was happening...what I had suspected since all this nonsense had started.

Monday morning, Peter went to wake Paige, and she would not get out of bed.  I went upstairs to meet crying child...and I knew.  "Honey?  Does it feel like strep?"  She's had it so much that she can tell the difference between allergies and strep.

Between tears, she nodded "yes," and I made an immediate appointment for 7:50AM.  Her results came back immediately.

POSITIVE.

And she never ran fever.

The incubation period fits with Hunter's acute change, as she said her throat started hurting Tuesday night/Wed morning.  Strep can take 7-10 days to become an active infection.

So here's my theory:  Hunter had strep like we thought.  I either had him swabbed too early or the medical director hasn't swabbed a throat in a long time (the nurse typically does it, but I told them it could be a hard swab so they sent him to do it).  Paige's anxiety increased, because as I've said for awhile, she seems to have PANDAS as well, with her anxiety heightening when she's around strep.

I asked the Dr if Hunter could have cleared his strep on his own, and she said yes- they routinely give antibiotics due to the possibility of the affect of strep on the heart.

I also asked about the possibility of Paige being a strep carrier.  She explained that carriers always carry the bacteria, but it doesn't becoarme an active infection until their immune system is down, and it attacks.  After a sleepover the weekend before, sports, playdates, etc, she was an easy target.  We scheduled an appt on day 12 after antibiotics to see if her swab is positive; if it is, she's a carrier.  She said we will talk about possible treatment options after that appointment.

I prayed hard that Hunter's swab would be positive.  I told God I wasn't praying "to be right,"  It's never been about proving someone wrong, about making my 'theory' accurate...

it's about helping our son.

I am kicking myself for not following my gut.  I may not have gone to medical school, but I have been a mom for 10 years...and I know my children.

We got the call today to schedule Hunter for the day treatment program.  Here we are, going to drastic measures, when could we have fixed this with some Cefdinir????

I hate this disease today.  Well, most days.

But today, I feel alone in this fight without clear answers.
I feel worried.
I feel confused.
I feel exhausted.
I feel doubtful.

I feel defeated.



O My Soul- Casting Crowns

https://youtu.be/Tn5aq54yu8A

 Oh, my soul

Oh, how you worry
Oh, how you're weary, from fearing you lost control
This was the one thing, you didn't see coming
And no one would blame you, though
If you cried in private
If you tried to hide it away, so no one knows
No one will see, if you stop believing

Oh, my soul
You are not alone
There's a place where fear has to face the God you know
One more day, He will make a way
Let Him show you how, you can lay this down
'Cause you're not alone

Here and now
You can be honest
I won't try to promise that someday it all works out
'Cause this is the valley
And even now, He is breathing on your dry bones
And there will be dancing
There will be beauty where beauty was ash and stone
This much I know

Oh, my soul
You are not alone
There's a place where fear has to face the God you know
One more day, He will make a way
Let Him show you how, you can lay this down

I'm not strong enough, I can't take anymore
(You can lay it down, you can lay it down)
And my shipwrecked faith will never get me to shore
(You can lay it down, you can lay it down)
Can He find me here
Can He keep me from going under

Oh, my soul
You're not alone
There's a place where fear has to face the God you know
One more day, He will make a way
Let Him show you how, you can lay this down
'Cause you're not alone
Oh, my soul, you're not alone

Written by John Mark Hall, Bernie Herms • Copyright © Sony/ATV Music Publishing LLC, Universal Music Publishing Group