Last week mommy called The Cleveland Clinic to give them all my information and see if they could take me as their patient. You know, The Cleveland Clinic is ranked #3 among all the hospitals in the United States! Cleveland Clinic Children's Hospital's Neurology & Neurosurgery program ranked No.
1 in Ohio for the fifth consecutive year and ranked No. 3 nationally.
A couple days ago, mommy got a call from them to let her know that I was accepted as a patient! Now all I need to do is to get there. Once I do, there's a group of 75 of the best doctors in Neurology that they will all see me and discuss my case to see how to help me. On my first trip I have to stay minimum for a week, during which they'll make different studies and analysis, like a 3 day EEG. I've only had 1hr EEG's before, so they'll be able to know more about where my seizures come from and what triggers them.
Thank you so much for all your help and the time that you take to read about me! My family is very grateful for it!
- Philippe
Sunday, July 22, 2012
Thursday, July 19, 2012
Send me to Cleveland!
After 2 1/2 years of seizures with no answers my parents want to take me to Cleveland to meet neurologists that specialize in cases like mine. My parents are hoping to figure out what is causing my seizures`and get me the medical care that I need.
We need your help to send me to Cleveland. My family is trying to raise some money to help with my expenses.
We are holding a BIG bake sale
Date: Saturday, July 28, 2012
Location: Riverton Wal-mart Parking Lot
Starting Time: 10:00 AM
We would love to see you there.
Wednesday, July 18, 2012
My Story
Hi! I'm Philippe, I'm 3 years old. I have an awesome family! Mom and Dad love me so much, and so does my little sister and puppy.
When I was born I wasn't breathing. I was blue and purple and completely limp. After 1-2 minutes of resuscitation I finally started breathing and everything seemed fine. I soon smiled and laughed for mommy and daddy. I learned to roll over, and to grab toys with my hands. I was learning to sit up but couldn't quite do it all by myself yet... |
| one of my stays at Primary's |
When I was 5 months old one day I went stiff, I started shaking, breathing funny, and my eyes were stuck to the side for a few minutes. Mommy and daddy took me to the clinic hoping it was nothing, but then it happened again and the doctor said "Go to the ER, NOW! We'll call and pre-register so you can go right back when you get there." This was the first of many hospital visits. All the milestones I had reached were suddenly gone. I couldn't hold my bottle anymore. I didn't even realize I had arms or hands anymore, they would just hang limp at my side.
For several months, the doctors didn't know what was going on, and didn't have any answers. Later I was diagnosed with seizures and infantile spasms. I was prescribed a seizure medication but it didn't seem to help me, it only made me more sleepy, grumpy, and spaced out. I was just a very quiet, life-less baby. Mommy started doing physical, speech, and occupational therapy with my every day. Therapists came to our house almost every day, and mommy also took me to a clinic to see even more therapists. I hated all the therapy, but it helped me a little bit.
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| $72,947.52 (x4) medicine my mom injected in my leg |
The treatment cured me from my infantile spasms, but I still have seizures. I've been on the Ketogenic Diet for 2 years. My seizures fluctuate a lot. Some months I've only had one or two, but most months I've had 7 to 11 seizures. They happen when I wake up in the morning and last 20 minutes. Then I sleep for 3 or 4 hours and I'm grumpy all day. I hate days when I have a seizure.
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| these were my medical bills one month in 2010 |
I still haven't been able to talk, but I am learning to communicate with some sign language.
Thank you for taking the time to read my story!
- Philippe
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