Life with Epilepsy

[tvschiulaz]

Hi Everyone:  So I have to ask the question.  What is life like living with epilepsy?  I was exposed to epilepsy at a very young age because my younger sister has the illness.  When we were growing up, it was taboo to discuss the disease and we tried to hide it from everyone.

Of course, today, we know better and have told our parents off about it.  It is an illness that is maintanable with the assistance of medicine, the doctors, and technology.

So tell me, how do you deal with your child's condition?

[Elyssa414]

Wow, how do I even begin to answer this question...

Unfortunately for my son it has not been maintained. He developed typically, and even hit milestone ahead of time his whole first year. He was bright and starting to talk and walking and running. Then the seizures started between 14 and 15mos, and by 18 months he couldn't walk or make any sounds except to scream/cry. He couldn't feed himself or even roll over or sit up without help. The seizures, (Infantile Spasms or West Syndrome), were devastating for my son.

Since then he has undergone two rounds of steroid treatments, one of which almost killed him, two brain surgeries, tried a bunch of different anti-epileptic drugs... Right now he is on the ketogenic diet, (a VERY strictly regimented diet that simulates starvation, where all of his food, EVERY SINGLE THING that goes into his mouth must be calculated to an exact ratio, and then weighed out on a gram scale before consumption), he also has a VNS implant, (like a pace maker, but for the brain)

The brain surgeries stopped him from having 300+ seizures a day, and probably saved his life, and the steroids stopped the seizures long enough for him to re-learn how to walk... twice. He is now walking, running, climbing and even talking a little bit at age 7... But he's still having 50-100+ small seizures every day.

We are constantly researching new treatments, and just struggling to maintain skills despite all the seizures. On June 21st we are flying across the country to see a new specialist, and hoping he can offer a new idea to help Elijah get better seizure control.

Epilepsy took my bright clever typical toddler and replaced him with my wonderful, loving, sweet, developmentally disabled child. My biggest fear is that the seizures will someday take this child from me altogether... Epilepsy has invaded our lives and thoughts every waking moment of every day, and it is a hard thing to live with. But we feel VERY lucky that he is doing as well as he is, in spite of everything he's gone through. We feel like we have become stronger, happier, more loving people because of our older son's trials. And we love him no matter what.