Cleveland Clinic: Day 4

Today was one of the worst days. Not because Philippe had a seizure, but because he didn't have a seizure...

On monday I had met the doctor we'll be working with long-term, and he's wonderful! But now he is on vacation, so we're seeing another doctor here who's apparently famous and world-renowned.

She came in our room with 7 other medical personnel (because she never goes anywhere by herself, but 7 extra is a bit excessive) so right off the bat I felt bombarded. Then came some news I was NOT expecting! She said "normal" (which is the word I HATE more than anything in the world!) seizure patients have things called "spikes" or "traces" of seizure activity throughout the day, even when they're not having a seizure in that moment. She told me "Philippe's EEG is boringly normal" (and used that awful word again!). So, after watching my son have seizures for 3 YEARS she tells me that since they haven't seen any seizure activity in 4 days that my son doesn't have epilepsy, and we need to go a different route. She said "he clearly has some developmental delays, so we need to focus on the cause of those, instead of focusing on epilepsy, which he doesn't have".

I was completely caught off-guard and FURIOUS!!! I was thinking "The reason he has developmental days is BECAUSE HE HAS SEIZURES! So why don't we focus on the cause of THAT and we'll have our answer!" But instead I just said we'll wait in the hospital hooked up to machines for as long as we need to be until Philippe has a seizure. and THEN she proceeds to tell me "Well it's just not practical for you to continue to stay in the hospital. He has an appointment on Monday so we'll leave him hooked up for the weekend and if something exciting happens in that time we'll change our course of thinking. But he doesn't have epilepsy so we've got you set you for an appointment with a child psychologist to do autism testing and we're going that route. Do you agree with that?"

I was thinking "SERIOUSLY?!?!! You're famous???! NO I don't agree! And I don't like the way you're talking AT me with your platoon of followers, instead of LISTENING to me! We flew all the way across the country to come here and you're just going to throw us out!" 

But to be the polite girl my mom taught me to be I just said "ok, well we'll just see what happens over the weekend and take it from there."

I took Belle and went to the Ronald McDonald house (where I got a room) and I just cried. There was nothing else I could do because my body and brain didn't have the energy, and everything else was out of my control. I've never felt so overwhelmingly defeated and helpless. The ONE thing I wanted, I NEEDED, out of this whole experience was an answer to why my son has seizures! Not only did I not get that, my son and I were getting denied the chance to even try to find an answer because they're telling me the seizures don't even exist!

After the awful news, a very sweet girl named Jenny came to our room with a guitar, keyboard, and a cart full of instruments for "musical therapy". She was so patient and didn't even get mad when Philippe pulled the guitar strings hard or slammed on the piano keys with his hands and feet. It was the best part of our day. Jenny, you are a very kind soul!