PANDAS flares, Scares, and Donkey Milk

I liken a PANDAS flare to an earthquake.  It comes out of nowhere, with no warning, and…BAM!  Knocks your house down.

Or, in this case, it rattles the windows, brings you to your knees, and reminds you God is in control.  As much as I want to be the one driving this car, I’m just a toddler in the back seat, with a death grip on my little plastic steering wheel.  

On Sunday night our Haley started feeling bad.  Starting with fever and cold chills.  Her fever got up to 101.9, and I started layering on the peppermint essential oil and cool washcloths to bring it down.  (I despise Tylenol, but that’s another story.)  I also gave her a dose of Boiron Oscillococcinum, homeopathic remedy for body aches, fever, and chills, and Germ Fighter essential oils to boost her immune system.  She’d already had her donkey milk that evening.  Her fever came down enough to avoid having to give her any Ibuprofen or Tylenol, and she was able to sleep all night.  

Monday morning her stomach hurt and she felt like throwing up.  At this point, she refused to drink her morning donkey milk, and would hardly drink any water.  ALL DAY.  I was able to get her to take a couple of sips of milk later that afternoon, but not even close to her usual dose.  I started to get cocky….maybe she doesn’t need it as much anymore!?  After all, she’d been sick all day, with no PANDAS symptoms.  Maybe we’re done with this beast, once and for all!!

That night, as I put her to bed, she got all teary eyed.  “Momma, I’m just scared that I’ll wake up and you won’t be here.”  (This was my warning…the rumble I should have paid attention to.  Separation Anxiety used to be one of her big PANDAS things, especially at night.)  My hubby was out of town, so I let her sleep in our bed.  That night, she projectile vomited all the water she’d downed that day.  And probably any donkey milk she’d gotten down.  

Tuesday morning she was still sick, and now she was scared to drink anything for fear of throwing it up. Again, she refused to drink more than a few sips of donkey milk that morning.  Later she was able to eat a few Pumpkin Paleo pancakes, and seemed to perk up.  She even got a little bit of donkey milk down that night.  I thought we had gotten through unscathed.

When I put her to bed, she got scared again and wanted to sleep in my bed.  I knew she wasn’t sick anymore, but there was that fear in her eyes….not a sickness fear of throwing up, but a PANDAS fear.  So I let her go to my bed.  She wasn’t asleep more than an hour when she woke up screaming.  Crying.  Almost moaning.  It’s a different kind of cry, and once you know it, you know what it is.  It’s PANDAS.  She was sitting up in my bed, crying and holding her hands in this clenched baby bird type of way, saying how they hurt, they hurt, and hardly able to speak to me, except to ask me, “Please pray for me, Momma.”  I held her, and prayed.  My cocky self, thinking we were on firm ground, feeling it shake beneath my feet…and back to my knees.  I prayed.  I prayed God would take it away again, and that the good thing he gave us, strange as it sounds, I prayed and thanked him for Donkey Milk, and asked that it would work again for our little girl.

Then I made her drink her milk.  She couldn’t hold the glass in her hands, she was scared if she clenched them or used them at all, they would hurt again.  My daughter who loves her Donkey Milk could barely swallow it between her sobs.  I begged and pleaded her through a few more sips…maybe a half a cup.  She got as much down as she could, then she went to sleep.

That night as I lay beside her, I could feel her entire body jerk and twitch.  She used to do that, in her sleep.  She used to wake up terrified.  Hallucinating.  But tonight she twitched, and slept on.  Through the night, she slept at peace.

When she woke up, she was….fine.  Perfectly healthy and hungry.  Singing songs in the kitchen.  Building teepees and intricate wooden props in the yard.  Running and laughing and playing.  She did insist on washing her hands before she ate her apple on the porch.  But hey, good hygiene is ok with me.  (She didn’t use half the bottle of soap!)

Tonight I asked her if she would be ok sleeping in her own bed.  “Yes, Momma, I’ll be fine.”

And she was.  

I’m not going to lie to you.  I was scared.  I’m still scared.  I wonder what will happen if she goes away to college someday and gets sick without me.  I wonder if we should keep her under lock and key.  Sterilize the world.  Buy stock in Clorox Wipes.  I wonder if next time it could be worse.  

Perfect Love Drives Out Fear.

PERFECT love.

Lord, let me have your perfect love.  Let me not let this fear rule my life.  Or hers.  Help us to live our lives and share our story with those who are hurting and desperate and about to lose hope.  Lord, let this be a blessing to them and their little ones.  Restore their minds.  Give them Your Peace.  Give them a Hope and a Future.

In the name of the one and only perfect Healer, Jesus.

Amen

Update the next day…the cat scratched her face, and knocked down her teepee, and we’re packing up the house to move next week.  She was extra weepy.  I got worried.  “Haley, is the PANDAS coming back?  I’m so worried about you.”  She looked at me and said, “Momma, I won’t worry about it if YOU quit worrying about it!”  So true.  If I spend half the time I worry in prayer, I would be a warrior by now.  She’s playing in the living room with her sister.  Not worried.  Not weepy.  Even with cat scratches and boxes and chaos.  Lord, bless her.  

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2 responses to “PANDAS flares, Scares, and Donkey Milk

  1. I’m so sorry your daughter had a flare. I know the cry, the fear, separation anxiety, irrationality, and I understand your response. It is a place parents never want to relive or return to. . I pray she stays well.

  2. Thank you, Nora! It was probably less than 30 minutes. But half an hour of PANDAS is like half an hour in the dentist office….! It re-awakens all those old fears and worries that you thought you’d left behind, and reminds you of how it was, and how some kids are, every day. Thank you so much for your prayers on our behalf!!

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