Epilepsy Research

In an attempt to better understand the possible diagnosis of my daughter, I have done some research on Childhood Occipital Epilepsy. I think that this will also help others to understand the syndrome as well. (Please remember, as I remind myself as well, that they have not diagnosed Elizabeth with epilepsy, but have given us a great place to start. The neurologist believes that this is the most likely diagnosis.)

Epileptic seizures are brought on by a bombardment of electrical pulses to the brain. The average brain, at any given time of day, receives 80 electrical pulses per second. At the time of a seizure, the brain can be receiving up to 500 pulses per second. The pulses can affect only a specific lobe of the brain (partial), but all seizures have the ability to spread throughout the entire brain. In Elizabeth's case, it seems as though her seizures are limited to the occipital lobe. The occipital lobe is located at the back of the brain and it's main function is the operation and control of vision. A seizure to this area of the brain can cause loss of or blurred vision, hallucinations, etc.

Unfortunately there are many types of seizures and many forms of epilepsy. I am not yet 100% convinced that Elizabeth's seizures are occipital. I feel as though there are other symptoms (incontinence, confusion, length of episodes, etc.) that aren't covered in the spectrum of occipital epilepsy. Maybe her epilepsy is not partial (limited to one lobe of the brain) but rather spread to additional areas.

Elizabeth's EEG on Tuesday will mainly focus on the occipital lobe of her brain. The test will take roughly an hour, depending on her cooperation. We will be able to get the results an hour later. I am eager for answers and to talk about treatment. Assuming that her case of epilepsy (no matter which type) is text book, she can easily be treated with medication. Childhood epilepsy is often gone by the time the child reaches puberty. EEGs are run every three years to adjust or remove medications accordingly.

Taking a minute to learn about the syndrome has given me so much understanding of what Elizabeth is going through. Even though she doesn't remember the episodes, she must feel very alone and scared when it is happening. As her mother, I wish that I could clap my hands and she would snap out of it. There's nothing that we can do to help pass an episode; we just have to wait and all the while, let her know that we are there with her. Anybody who has a relationship with a child (mother or father, grandparent, aunt or uncle) wishes that they could take the pain that child is experiencing (a burn, a cold, or a seizure) and place it upon themselves. Elizabeth is so small, innocent, and undeserving of disease. As much as I wish I could fight all of her battles for her, I can't. Instead, I pray for Elizabeth's strength to get her through whatever her diagnosis might be. Nathan and I (among many others) will be there to help her along the way.

Having a "sick" child most certainly puts a lot into perspective. Life is very precious and we may have taken our health for granite. Because of the seizures, and the absolute randomness of their occurrences, Elizabeth needs to be monitored around the clock. I think that she's already tired of us asking her, "Elizabeth, are you feeling OK?"!

I am so grateful for all of the support that we have received from friends, family, and medical professionals (I felt terrible for the nurses and doctors that were working in the ER on Christmas Eve). We are blessed with such charismatic relationships and thank each and every one of you for your support.

I will continue to update my blog with Elizabeth's status.

Trish VanDusseldorp


http://www.livestrong.com/ has a lot of great information on not only epilepsy, but many other syndromes, diseases, and ailments. I got tired of trying to read between the lines filled with medical jargon. It's a great website if your looking for answers.