Philippe's Health Summary

...will I go to Med School and become a neurologist?

No, but I will encourage and support doctors and scientists searching for answers.

And I will keep praying and fighting for a cure!

Through the 8-day EEG we found out that 99% of the time Philippe's brain activity has zero evidence of epilepsy: no "traces", "spikes", or "hints" of seizures. For only a few quick seconds the electrical activity in his brain goes haywire and he has a seizure (it's always right after waking up when the brain is switching from "asleep" to "awake").

His PET scan revealed that there's not 1 specific spot or area, but that his entire brain is not metabolizing sugars properly, in other words it's not functioning as effectively as it should. Some parts are slightly more than others though. 

We already knew he had developmental delays, but now he is offically diagnosed with PDD NOS (it's like Autism's little Sister). 

We are waiting on results from the MRI. 

We are continuing to do DNA (genetic) and metabolic tests, but won't know those results for several months. 

Cleveland Clinic Emotional Journey:

Throughout the whole experience in Cleveland my emotions were dramatically intensified and bipolar. Every tiny little thing made me want to punch someone, hug someone, scream, or cry (or all of the above!). It's SO hard to explain. My new friend Mandalina, who I met last Tuesday with Gabe, after she got home said "You come back so drained in everyway...hard to describe to people unless you've done it! i did it alone and was sooooooo tired i couldnt even think straight when i got home!" 

I agree, every bit. It was tough, I feel depleted, and it is SO hard to explain to the rest of the world, especially to everyone that hasn't experienced having a child with health problems. 

The hardest part was being alone; I always have Marcel to comfort me, help make big and small decisions, listen to all my complaints, and just understand completely how I'm feeling and what I'm thinking without me even saying a word. Of course we texted and talked on the phone a LOT while I was gone. He's such an exceptionally AMAZING and involved father and husband that not having him by my side was TOUGH! This was the first appointment he hasn't been to (other than simple "well child" check-ups) so it was tough on him too.

We've been in and out of hospitals several times, staying anywhere from a few hours to over a week. In Primary's they have a "pediatric neurology" section, but we are usually the only family there with a "seizure kid." 

Until Cleveland, never had we stayed in a section of the hospital devoted 100% to pediatric epilepsy. It was REALLY TOUGH for me! It's really hard to see Philippe have a seizure, but the hardest part is to HEAR it! When his seizures start he makes an awful sound that's like a scream, cry, and a screech all combined, plus it gets cut off a few times while his body seizes. It is the WORST sound in the world! In that one noise you can hear him 'saying' he's scared, confused, in pain, horrified, and NEEDS HELP NOW!!!

Other kids in Cleveland each made their own "seizure sound". They were similar to Philippe's but different, and they're always loud. Even though Philippe only had 1 recorded seizure in the 10 days we were in Cleveland, all day long I heard other kids having seizures, screaming and whaling. The other kids ages ranged from a baby next door to us to a 17-year old across the hall. 

Most days I am pretty tough, and it takes a LOT to wear me down. On day 8, Monday was one of those days that I "just couldn't do it" anymore. A new kid arrived at the hospital. He looked about 7 or 8 years old. They had to put his electrodes on to start his EEG and for 2 hours he was screaming and freaking out like Philippe does when they put his on. For some reason his mom kept his room door open the whole time! Even with our door closed we could still hear him screaming and crying the whole time. For the rest of the day I kept hearing that same little boy along with 2 other boys having a LOT of seizures, making their "seizure sound" followed by setting off the alarm that calls in the nurses, all day long. By the afternoon, even though Philippe was perfectly fine (and even had his EEG electrodes taken off by this time), I was laying on his hospital bed bawling my eyes out for the other children and families around us. In the most excruciatingly painful way possible I understand all that they were going through. I wish I had a way to make all the kids healthy. A way to take away all their suffering and pain. A way to give their families comfort and peace. I am not just fighting for Philippe anymore. I'm fighting for Mandalina and her sons Gabe and Michael, and Joy and Chris and their son Brendan, and Monica's son John, and Sarah and Adam who introduced us to the Cleveland Clinic where they've been taking their son Cole, and every person that has ever had a seizure, and all the families, friends, and neighbors that have been affected by them. 

...will I go to Med School and become a neurologist? No, but I will encourage and support doctors and scientists searching for answers. And I will keep praying and fighting for a cure!

-Candice

*note: anti-convulsants (anti-seizure meds) may suppress seizures, but they are note a cure: if the medication stops the seizures start right back up, if the medication even worked in the first place. 

The Ketogenic diet has worked to *cure* some individuals with seizures, but it's not 100% effective every time or with every person. We did it for 2 years with Philippe; it helped, but didn't stop his seizures.