Updates on Alyssa

It has taken me awhile to get to updating. I am tired. We are all tired. Alyssa is still not doing well even after starting the new med. She has only had five days in the last month that she has not had seizures. There are many nights when she is having 8 or more seizures and she is starting to have more during the day as well. She was started on Keppra a month ago and the only change that we saw was in her behavior. This medicine has made her mean and grumpy, which is so not Alyssa. There has been absolutely no change in the seizure activity and so we are weening her off of this one. To say that we are a bit discouraged is an understatement. We are so tired and Alyssa is just fed up with all of it.

We were finally able to see her neurologist today. Her EEG results were abnormal and showed that her frontal lobe could be where the seizures are originating from. Unfortunately her doctor said that frontal lobe seizures are notoriously known for being difficult to treat. Not what we wanted to hear. They also say that if 3 medications are unsuccessful, then generally no medications will be effective and the seizures are considered intractable (untreatable). So, the plan. We are going to start another med tonight called Zonegran. We'll see how she does over the next month. Hopefully we will see improvement with few side effects. If we don't, then she will go in for an extended EEG. She will be inpatient for several days while they monitor her for a longer period of time so that we can hopefully get a better picture of where the seizures are coming from. Depending on those results, we will possibly be looking into epilepsy surgery to remove the piece of her brain that is causing the seizures.

I have been researching like crazy and though surgery sounds terrifying and drastic, it can also be extremely successful with very few complications. Many patients following surgery are completely seizure free or the seizures are significantly improved. The testing to even qualify for surgery is very intense, so we will see what happens. Hopefully this new medicine will help and we won't have to worry about it! :) I just want my Alyssa back. I hate seeing her like this.

So time will tell us which path to go. Jeff and I are constantly praying for help in making these decisions. I know that Heavenly Father will help us. We just have to trust in him and in his time frame. We are so tired. I am feeling a little bit (a lot) overwhelmed with all of my children's needs. I'm tired of living in survival mode. It seems like we have been living like this for years now and I am worn out. But, we all keep trucking along.

There have been some wonderful things happening as well! Jared was nominated to be a wish kid and just this week we were able to go to the Make A Wish wishing house so that he could make his wish. It was so wonderful and just magical! He was so delighted with the whole process and it was so fun to watch him as he participated in the wish magic! He wants to go to Disney World so hopefully we will be heading that way in a couple of months. This trip is coming at a time when our family could really use it. I am so grateful for the amazing people in this world who do so much good for others. All five of us are excited! As soon as I get the pictures of the night I'll write more about this magical night. Thank goodness for the little tender mercies that keep us going.