Haley Is My Hero

Where does time go? I have meant to write to let you all know how things are going with Haley and our family. Thanks to all of you that have inquired. I will try to update more regularly in the future.

The last time I wrote Haley had just started Banzel. Initially it was wonderful for her. We saw noticeable decreases in the generalized tonic-clonic seizures (grand mal), but we also saw an appearance of some complex partials, myoclonics and drops. Every medication has it tradeoffs. We made increases in this medication very gradually and she did have better days. The biggest thing we did notice with the addition of Banzel was her increased speech. At times it got somewhat annoying to me, but then I quickly reminded myself there are many Dravet kids that have no language left and their parents would give their right arm to hear their precious child utter “mom” or “dad”.

March went by and there was nothing too remarkable about that month. We made some adjustments to her Depakote because the Banzel does interact with that drug. In April things got worse all of the sudden. It wasn’t until I was making sure we had all her drugs for her Make-A-Wish trip that I realized what could be the culprit. At the beginning of April we had been given the generic form of Depakote, and according to her seizure calendar there was a direct correlation to that new form and seizures. We went off the generic and back to the name brand and amazing the seizures decreased.

The highlight of our year had to be our Make-A-Wish trip in April. We went to Give Kids the World in Kississimee, FL. They enabled us to go to Walt Disney World, Universal Studios, Sea World and enjoy a ton of activities at their location. It was incredible. Haley really enjoyed meeting Cinderella. They whole time she was in her princess dress she was in character. You can check out the photos on the photo page.

May was an OK month of seizure control, but June was amazing. We had only eight seizures total that month…then things turned ugly! The summers are always harder due to the heat. However, Haley did not do much outside this summer and it was not a bad “heat” summer. The seizures picked up big time. They were no longer isolated to her sleeping hours. Now they were coming in the middle of the day, in mid-sentence, “boom”…down she would go into convulsions. Those are so difficult to get used to.

In August we went back to the neurologist and had the plan to increase the Banzel again. Then on the car ride home from Williamsburg (about an hour from our house), Haley went into a terrible seizure. It is an awful feeling when you cannot stop or pull over safely. You try to keep control of your vehicle while trying to reach your child. As I glanced in my rear view mirror, I could see she was so blue…blue-gray. It is terrifying, yet you try to maintain composure to help her. We finally managed to pull over and she came to. Those are the most frightening seizures. Since that day, we have had very few “seizure-free” days.

We went back to the neurologist last week. We decided that the Banzel had some positive effects at a lower dose, so we cut her dosage in half. We also believe that the Klonopin (Clorazepam) that she takes has lost it’s efficacy. It is a valium based drug and is excellent in controlling seizures, but over time you need more and more to get the same effect. Increasing the dosage too high renders any “rescue drugs” ineffective. What a tightrope we walk. So we are going to wean her off that drug starting in October. From what I understand it is an awful wean. Many moms and the doctor have told me, things will get worse before they get better. What fun we have to look forward to as we wind down 2009!!