A Day In The Life Of Christian Loper, ME!

Hi everyone!  My name is Christian Loper and I am from a small town in Texas.   I am 11 years old (but will be 12 in October!) and in the fifth grade.  I have two older brothers that are awesome and an older sister that is super.  I love my mom and dad because they are the best parents anyone could ever ask for.  I am spoiled but not rotten cause my family has taught me to appreciate the greater things in life.  I am always happy regardless of what situation I am in, except for one situation, Dys/auto/nomia -  a medical term utilized for a group of complex conditions that are caused by a malfunction of the autonomic nervous system (ANS). The ANS regulates all of the unconscious functions of the body, including the cardiovascular system, gastrointestinal system, metabolic system, and endocrine system. A malfunction of the ANS can cause debilitating symptoms and may pose significant challenges for effective medical treatment. I started getting sick in June of 2008 and I spent 10 days in the Lubbock hospital.  They thought I had either lymphoma or lymes disease, but all tests ran for both diseases were negative.  I was having severe headaches, passing out (on my face!) so they ordered an EEG.  Those results showed that I was having absence seizures.  I started taking topamax 100mg twice a day and it made me so sick :(  I went from doctor to doctor to doctor over the next seven months.  In February of 2009 I was admitted into Northwest Hospital where they suspected I had leukemia, but once again the test was negative.  They just decided that I had a low white blood count and my body simply struggled to fight off infections.  In November 2009 I was referred to the Children's Hospital in Dallas.  After days of testing they came to the "conclusion" that I had Crohn's disease.  I was started on more medication and sent home.  After that I continued to visit my local doctor as well as several others in Amarillo.  I was sick almost daily with  these symptoms: Fatigue, headaches, nausea, vomiting, muscle and joint pain, and insomnia, for about 11 months.  


In January 2010, I had been so sick that I had lost at least 20 pounds, I was missing a lot of school, and kept feeling worse each day.  One night I was so sick that I was screaming and crying because my head hurt so bad that my dad picked me up and my mom drove us to BSA.  My dad carried me into the hospital and both my parents were in tears, begging for help.  That day I met Dr. Habersang who over the next nine months treated me for each individual symptom.  I was in the hospital 7 times during those nine months.  In September, he decided that I needed further evaluation and referred me to Dr. Labron at Texas Children's Hospital in Houston.  When first meeting with her I went through more testing and lots of questions and she instantly knew I had dysautonomia.  I have been to Houston to see her eight times since October 2010, and have another visit scheduled for my birthday :( October 5th.


My disease has caused a lot of stress on me and my family because we don't have any idea when I will get sick again.  I have stayed in hospitals for up to two weeks at a time and have honestly thought I was dying because of how bad I felt and how hard it was for me to explain how I felt inside my body.  I was scheduled to go see a pediatric autonomic testing center in Cleveland, Ohio on December 23 (the appointment had been scheduled for nine months) but my mom got a call two weeks ago saying that the office was relocating and they wouldn't even be able to schedule me for another appointment until the spring of 2012, which could mean another nine months of waiting after being scheduled.  The only other two hospitals that do autonomic testing on children are the Mayo clinic (15 to 18 month waiting period) or the Children's Memorial Hospital in Chicago.  If things go as planned (PRAY PRAY PRAY) they think they can see me in as little as one to two months from now.  


I am unable to tell you specifically how many known cases there are of dysautonomia there are world wide, but I do know that the disease itself is rare, and it is even more rare in children as young as me.  For now I have to wait and pray that I don't get sick again before I get to go in and meet my new set of doctors.  I am going to end this blog with a few websites that you can read more information on.  Thank you for reading and God bless you all!  


http://www.dynakids.org/Documents/DebbieDysautonomiaArticle.pdf
http://en.wikipedia.org/wiki/Dysautonomia
http://www.medicalnewstoday.com/releases/76785.php
http://www.dinet.org/




written by Shawnda Brooke Wilkins with my mother helping me remember dates and doctors.