First Do No Harm - Epilepsy Awareness Month

"Check to see if she's breathing." That's what I've been saying and doing for that last 20 years. The Hummingbird has a number of disabilities. Epilepsy being just one of many.
So....if you'd like, join me on a trip down memory lane to her first epileptic seizure.

She was nine months old and sleeping in her car seat chair when her deaf and hard of hearing teacher noticed she wasn't acting right. She was having her first grand mal seizure. DH and I took her to the emergency room and they told us nothing could be done for her (don't you just love doctors sometimes?...not). Come to learn that you can stop seizures through certain medications. She had three more grand mal seizures. I had no other choice but to start her on an anti-convulsant drug, Phenobarbital.

From nine months old to seven years we went through cocktails of drugs taking it to their maximum levels where she was lethargic, listless and falling asleep with food in her mouth. Her eyeballs would shake and quiver from side to side from being toxic on Phenobarbital. And with all of that, her seizures continued to increase. She was having a grand mal seizure everyday. Her grand mals (tonic clonic) consist of extremely hard convulsions. Her body would stiffen and she would throw her head back. Her eyes would either be fixed to the left or right or rolled back into her head. She would often hold her breath until her face turned grey, her fingernails turned blue and her lips turned purple. She would often scream with such a piercing cry, it would have me in tears. It has to be one of the worst situations for a mother to be in, when we can't do a thing for our children to stop the madness. But only to ride it out. She was slowly deteriorating and the doctors couldn't help me except to add another drug on top of the three she was already taking.

I do believe it was an Angel who sat me in front of the television set one October evening in 1997. Jim Abrahams was being interviewed about his son who also had epilepsy and an amazing treatment to control, often cure it. It's through a diet of food, of all things. It took me three years of fighting with our doctors and insurance to agree to start her on the Ketogenic diet. Although, high in fat and protein, the ketogenic diet is a way to control epilepsy. On the second day of starting the diet, the seizures stopped for eight months. It was truly amazing. However, her seizures have come back, but it's about one every six to 12 weeks. I'll take that over grand mals every single day. Along with the ketogenic diet, she's also taking medication although cut by half and at a very low dose.
She is no longer lethargic or listless. I give credit to the Ketogenic diet for giving my daughter's life back to her. She has a smile that is sure to melt your heart.

November is Epilepsy Awareness Month.

Few medical conditions have carried the mystique or generated as much controversy as epilepsy. Coping with societal challenges can be the most difficult part of having epilepsy.

November is Epilepsy Month, a time to promote awareness of epilepsy, the third most common neurological disorder, affecting approximately 2.5 million Americans. It has been estimated that 10% of the American population will experience a seizure in their lifetime. Every year there are nearly 181 thousand newly diagnosed epilepsy cases in the United States, and over 45 thousand of
these are children under 15 years of age.

Epilepsy is defined as the recurrence of two or more unprovoked
seizures requiring long-term treatment with anti-epileptic (AE)
medication.

The focus of Epilepsy Awareness Month is to make people aware of the disorder and promote tolerance and overall understanding for the condition.