Welcome Friends!
Alyssa W.
Florida
Birth Date - November 21, 2005
Main Diagnosis - Epilepsy
THEME: hearts - purple for epilepsy
Biography
I was born at 38 weeks gestation due to no amniotic fluid. I was born sm gestational size and quit growing at 35wks. I weighed 5lbs 6ozs and didn't breath at first. I was able to stay with my mommy though. Like most newborns I had jaundice and had to go through phototherapy lights. My mommy noticed around 2wks old that my right leg shook frequently. She mentioned it to my dr and she sent me to a neurologist. It wasn't till I was 4mths old I was diagnosed with a seizure disorder. I continue to battle with this disorder to today. I was hospitalized numerous times as a infant due to this disorder and got sick numerous times due to the seizures lowering my immune system. At 2 1/2 I had to travel 2hours away from my home to have a vagal nerve stimulator inserted. By age 4 it was apparent I had a severe developmental delay from the seizures and my seizure disorder became Epilepsy. At this present day at age 6 I have 13 known diseases.
Epilepsy, Asthma, Gerd, Gastroparsis, Precocious Puberty, Mood Disorder, Developmental Delay, Sensory Processing Disorder, Hirsutism, Malaise, Dysmotility, Vit D deficiency and recurrent infections. I am on 18medicines and wear braces on both my legs. I have currently 14 specialists. My joints always hurt, I need to sleep a lot, I have a wheel chair to help me out and I have to keep a routine! I am mentally 3 even though I am 6. My mom has worked hard to take care of me as a single mother and her parents have helped her out a lot. My Big Daddy which is what I called my Grandpa (my moms dad) died a little over a year ago. I have a seizure response dog in training and have a emfit monitor to alert to seizures when I am sleeping.
I am being tested to see which of 3 possibly auto immune disease I may have and am being hospitalized for a week to retry the ketogenic diet. Last time I tried it I got real sick and almost went to ICU with my O2 levels and heart rate. We decided to stop and retry later when I was 100%.
