I Hate Epilepsy

Yesterday, during one of Tennyson's doctor appointments, she began having seizures. She continued to have seizures every minute or so for over an hour and a half. This was far more frequent than her normal daily seizure activity.

Ironically, we had an appointment with her neurologist in the afternoon. We have been growing more and more concerned that Tennyson's seizures have never been prevented with her medications. Her seizures began last August. For seven months, she has had one or more seizures a day. It's an incredibly helpless feeling to watch her have them.

Her seizures are classified as myoclonic and tonic seizures. They are in a class of seizures that are of the most difficult to prevent and control. Myoclonic seizures are what she had yesterday. It's a rhythmic pattern. Brief jerks that happen every minute or so. They scare her. She is very aware when she is having them. She looks at me as if she wants to say, "what's happening to me!?". She cries when  they are over. Sometimes she can have three or four in a row.

I hate epilepsy. I pray everyday for Tennyson to live a life without seizures. Each time she has one, I think to myself, "I hope that was the last seizure she ever has." If I could take one diagnosis away from Tennyson, it would be epilepsy.

Her doctor gave her a medicine called Ativan to make the new seizure episode stop. Essentially, it made her sleep. While she slept, our neurologists made an aggressive plan to try to prevent these seizures. We are starting a new prevention medication this evening called Rufinamide. We are going to give her this new medication for about two months to see whether or not it will work for Tennyson.

I kept her home from pre-school today. She had a rough day yesterday and I wanted her to be able to relax and rest. I was also worried she would have a repeat of yesterday and her new emergency treatment prescriptions were not ready to be picked up. Her respite care nurse came to the house and Tenn was able to stay in her jammies and watch her favorite show on TV.

I hate epilepsy. I hate it. I hate it. I hate it!

tennsense@gmail.com

Amy