I’ve been discouraged by the lack of progress in this diagnosis process, and there hasn’t been much to write about until now. Yes… since AUGUST… not much has happened as far as answers go. Before I dive into some of the new information we’ve gotten, however, I need to go back and describe one experience that was, for Trevor, much more significant than I expected it to be.
         After Dr. Sakonju hypothesized that Trevor was dealing with some form of dystonia, the first thing that they wanted to do was order an LP (lumbar puncture, or spinal-tap) to look for signs of low dopamine levels in Trevor’s spinal fluid. IF Trevor has what’s called Dopa-Responsive Dystonia (a.k.a. Segawa’s Disease, or Segawa’s Syndrome), then that would simplify this process. It almost sounded too good to be true: it would mean that Trevor’s brain simply isn’t manufacturing dopamine in the way that it should, and the lack of dopamine is causing his muscle malfunction.

All he would need to do is take dopamine each day, and he’d be a normally functioning kid.                                                           Just like that. 
Obviously, we hoped and prayed this would be the answer. We had to wait quite awhile, as usual, to get the LP approved and scheduled, but we were getting used to the waiting game.  It sounded simple enough — I even promised Trevor that this would be the EASIEST test he’d done so far.  They would just put him to sleep, and then wake him up, and he’d be done. He’d never feel the needle, he wouldn’t have to sit still, he’d just sleep.

So, the day of the test, Dr. Butterfield came in to see us along with the anesthesiologist, they talked to us about the process, and said all should be done in less than an hour.  Jason and I sat and watched the television, distracted by the horrifying events of the Boston Marathon Bombing that were unfolding on the news at that very moment.  What an awful awful time for our country.   So distracted by such a horrific event, we felt like it had only been minutes when Dr. Butterfield came in and told us Trevor was in recovery and would be ready to go home soon. 

When we went to recovery, Trevor was pretty groggy.   

They assured us it was just the anesthesia, and it would wear off.
After some juice and a snack, they said Trevor was good to go.  Trevor got unstrapped, sat up, turned white as a sheet, and sank back down in tears.  He couldn’t, or wouldn’t, tell us what was wrong.  He just wasn’t well. 
They assured us it was just the anesthesia, and it would wear off.
The kind nurses gave him some Tylenol and an ice pack for his head, and again released him.

  Jason carried him.  Like he always does. 

Trevor slept in the car, saying he just didn’t feel well, and when we got him home, we laid him on the couch to rest and watch some T.V.  We got home early enough for me to go into work for the afternoon, so since I’d been missing so much work for Trevor’s various appointments and tests, I decided to go ahead and go in. Daddy’s got this. Trevor’s sleeping. All is well.
Not long after I got to work, I received a text from Jason that said,

I need you to call me as soon as you get this.
Something is wrong.
I stepped out of my classroom and called right away, and I could hear Trevor screaming in the background. Jason told me, ” I don’t know what’s going on. Trevor is screaming in pain.  He says his legs and his back hurt. Should I take him in to the ER? What do I do??”  I agreed Trevor should go to the ER.  Messing around with possible spine complications isn’t something we want to do.    After a few minutes, though, Jason called me back, and all was quiet in the background.  He said, “By the time I got to the ER, whatever was happening to Trevor had stopped. He’s quiet now, and he’s fast asleep. So I turned around and I’m heading back home.”  I agreed; may as well let him sleep if everything seems ok now. 
About 20 minutes later, I got a text from Jason that said, 
We’re at the ER.

Confused, I called again. Jason explained that by the time he had gotten home, Trevor had woken and was again screaming and crying in pain.  The doctors at the ER could not explain it, and were just waiting for a callback from Dr. Butterfield before releasing Trevor.
When Dr. Butterfield called back, he said he’d never encountered that sort of reaction, and that it was likely Trevor’s dystonia had been triggered somehow by the LP or the anesthesia in a way that was causing very painful episodes of muscle contractions and spasming– not an unheard-of symptom for dystonia patients.  Just an unheard of reaction to an LP.

So, we took Trevor home, and for the next two days, every few hours, he would begin to wake from sleep fitfully.. he would start to toss and moan… and then the screaming would begin.  It. Was. Awful.

This calmed down after two days, and then for the next three days he had the dreaded “Spinal Headache”; the debilitating headache that feels like knives in your head if you are doing ANYTHING but lying down. 
                                                                It was not fun.

**EDIT: In a comment-thread on Facebook, somebody noticed sweet Lauren sitting there in the background in Trevor’s videos, and said what a faithful sister she must be.  I replied that yes, she is his companion and protector, and then I posted this picture: 

Lauren slept with Trevor that night, with her hand on his head because she knew his head was hurting him… and she stayed there with him all night.  She is his best friend. She doesn’t know what’s wrong, but she just accepts him the way he is, and cares when he’s not well.  I hope they both always know how lucky they are. 
Written by jackie