Editor’s Letter October – November 2016
The last quarter of the year is upon us and it never ceases to amaze me how fast time passes and although I enjoy the rollercoaster of events through the year the rhythm of time seems to slow, allowing me to simultaneously reflect and with eagerness and excitement plan for a new year.
November is Epilepsy Awareness month and I would like to talk a little more about the importance of this. We understand that statistically the majority of individuals with Angelman Syndrome have epilepsy. When my son Nathan was first diagnosed with epilepsy, before the age of 2 (even before the AS diagnosis), the severity of it was never explained to me. In fact, it was rather dismissed as if complications were a rarity. I did not know, but had to painfully learn that my son, who fought so hard to learn to walk and took his first steps at 2 and a half, would lose the ability due to uncontrollable seizure activity for months. A series of epileptic episodes also caused him to have to relearn to drink from a cup. We spent 6 months relearning how to do what most people can do without even thinking about it.
The ultimate lesson that we had to painfully learn was of the potentiality of epilepsy being life threatening. Even after his diagnosis of Angelman Syndrome the risk factor for his already very difficult to control epilepsy was never even mentioned. It wasn’t until we were again in the hospital and the seizures were again uncontrollable and happening one after another. He was hooked up to an EEG, a heart monitor and oxygen monitor. The staff rushed in, his monitor alarms began to sound. His heart rate that was once racing began to drop. I saw the nurses face fill with fear as she moved his entire body from side to side and said to him to “Stay with me”.
Today I am so grateful for having found the low carb, high fat therapeutic diet for Nathan because we now have excellent control of his seizures. Of all of his previous seizure triggers, only one remains. The first sign of illness is the only one that sends my mind back to that day and fills my heart with fear. With each passing illness we are more controlled and moving farther and farther away from seizure activity.
This month, along with awareness of epilepsy and it’s risks, I also need to raise awareness about the solution we have found.
“Complaining about a problem without proposing a solution is called whining”
– Teddy Roosevelt