POTS, PANS, Cinderella and The Little Prince

That Cinderella would be me. When I'm not working, you can find me at home, washing laundry, folding clothes, re-folding said clothes after my enraged son dumps the basket all over my bed and floor, running epsom salt baths that he won't step into, prepping food that he won't eat, scratching his back until he falls asleep. Waiting for Prince Charming to sweep me off my feet.

.

But wait--what happened to Prince Charming? He became Cinderfella and is snoring on the sofa after playing nursemaid all day. Meanwhile, the happy little animals--my daughter and our 4 year old puppy--scamper about, trying to help out while avoiding the dancing dishes. OK--that's an exaggeration. A cup was thrown, but only once, and not at anybody. Still, it was filled with tea. So it was more likely to singe than sing.

Enter: The Good Fairy. Enter: The Magic Wand, in the form of propranolol.

We began giving propranolol on a Friday. On Saturday, our son was happier, less anxious. His rages were GONE! Zero! His headaches were history!

Score! Propranolol: 1, Migraines: 0

On Sunday, our little prince was totally back-- his adventurous, interested, loving, boy-self personality. Whereas a week ago, he'd fretted about going to a supermarket, now there was little anxiety about heading out for a day in the city. He ate up the day. 

On Monday, Cinderella (yes, that is me,) left for her day job after a week staycation and forgot to give the little prince the new medicine. By Monday evening, he was feeling rage-y. By Tuesday morning, he had a migraine which he described as feeling like someone was hitting his head with a baseball bat. Fortunately, the Tuesday morning meds kicked in and by afternoon, he was happy and easy-going again. 

But the witches come at night.

Or, to mix fairy tales with Les Mis, the tigers. ("As they tear your hope apart.")

Fatigue + Hunger = Mad + Miserable. Even with food given at intervals (we're not new to this protein thing.) But each night since, it's gotten a little worse. We added propranolol at night, as was our doctor's original intent, but since Friday, the witches have overpowered us anyway.

Wanting to know why the propranolol was working, I did a little research. Propranolol is a medication used to lower blood pressure. It's a beta blocker, stifling the flow of adrenaline (epinephrine,) which can result in that fight/flight complex that our PANS kids can get, therefore also helping with migraines and anxiety. A subset of our world's teenagers have POTS (Postural orthostatic tachycardia syndrome.) I'm not saying that is what my little guy has--I really don't know, and it's dangerous for me to say this without consulting with our Good Fairy (doctor) because there are other syndromes or issues that can be resulting in his symptoms. (PANS parents have written in about mitochondrial disease and Mast Cell Syndrome, as well as others.)

So, my kid definitely has PANS. We don't know about POTS. Just that the propranolol worked--for a few days. And those few days were straight out of a fairy tale! Fantabulous.

Even with the new medicine, he continues to have separation anxiety at night and sleeps on the floor of our room. His ultra-loud throat-clearing tics woke me up at 6:15 Saturday morning. His OCD is bad at night (the tigers come in the form of not wanting to live.) His joints hurt. PANS and Lyme are alive and kicking him. 

NEWS ALERT: That cute little fuzzy animal (my daughter) caught a virus and has turned into Sleeping Beauty. Her germs are toxic. Can we keep her in a glass room? And can the little prince not get jealous when I dote on Sleeping Beauty?

We follow up with our doctor this week. And I'm hopeful; I still see improvement.

But for now, my message is this: if you don't already have a doctor who thinks outside the box, who is willing to look beyond the PANS and/or Lyme for either another syndrome or a syndrome caused by the first diseases, go out and find one. I savor the few days (and nights) that our little prince got his smile back--his real smile--and my faith in a happy ending has increased. 

We'll get there. As they say, if it's not OK in the end, then it's not yet The End.

Back to sweeping floors....ahem, and carting laundry down to the dungeon.