Septo Optic Dysplasia
I am an 11 yr old boy who has Septo Optic Dysplasia otherwise known as De Morsier Syndrome. I have to take alot of hormones that my body doesn't naturally make. I have seziures and I get hospitalized everytime I get sick. My mommy and daddy hate to see me get so sick. The doctors at the hospital are really cool they know me pretty well. It is good to see them when I am sick. I sometimes get to see the doctors go from interns to residents to chief residents to fellow doctors. They joke around alot when they see me on their next level of becoming a doctor. They say "hey, you know Patrick we really like seeing you but, we wish we could see you out of the hospital instead."
I am missing Growth hormone, this is the hormone that helps with the processing of food to make you grow. When I was a year old I only weighed 8 lbs. This really worried the doctors and after lots of hospital stays for failure to thrive and lots of poking and proding tests they found that I had SOD/ONH (optic nerve hypoplaysia)(small optic nerves). I needed growth hormone and cortisol replacement. I have 3 tumors in my brain called lypolmas (these are fatty deposits).
I have epilepsy and used to have about 10 to 20 seziures a day (this is after medication). I have a vegal nerve stimulator in my chest to help control the seziures. I went on the Ketogenic Diet for the second time, and boy it is working great. I am now seziure free and have gone from taking 28 pills per day to just 2 a day. The food isn't the greatest, & it is mostly all fat with very low carbs. I basically eat a stick and a half of butter daily. I feel a hundred percent better so it is well worth not eating sweets. I try not to cheat on my diet but sometimes I can't control myself. It is really hard to resist sometimes.
I also have ADHD and keep my parents really busy. They can't leave me alone for a minute, because I am always in to something. I am developmentally delayed so this makes the attention defecit even more severe. My developmental age is between a 5 and 7 year old. I am very curious and enjoy getting into mischief. This tends to lead to trouble. I love to wake up really early before everyone else and try to make breakfast. usually I just make a mess.
Well that is really all for now. Thank you for taking the time to visit my webpage and I hope the links that I am giving you help if you need more info.
Have a nice day!!! Love, Patrick
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SOD/ONH resource page
parents helping parents website
The Magic Foundation
ADHD parents support group
Keto diet
Send E-Mail to: hogue6272@yahoo.com
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