Baby Steps

Wednesday, June 26, 2013

Le Bonheur

We will be going to Le Bonheur children's hospital in Memphis on Sunday to do a complete seizure study with some technology that is not available here in town. Our last EEG gave us results that were pretty unexpected. Piper has been having a new or modified type of seizure that did not show up on the EEG. We think that these seizures are originating deeper in her brain and cannot be read by a typical EEG. Our neurologist was pleased with the results on paper and suggested that these new seizures are random body movements due to a poorly controlled motor system. We didn't agree and based on our experience of watching seizures, we know that they are in fact some type of seizure. So we talked with him about other tests that can detect deep brain seizures. There are only a few hospitals in the country with this technology and Le Bonheur is one of them. Advanced testing from a team of epileptologists will be done to evaluate and determine if there is any new information to be learned. The evaluation usually takes a week and she will have all of the testing done in a few days. It may not be the best few days for her but it will definitely be nice to have it all done in a shorter period of time.

As most of you know we have exhausted our resources as far as anticonvulsants go. At 22 months old she has been on 9 medications and the ketogenic diet. Only one of these medicines have shown to be effective and does not control seizures completely. This medication has the potential to cause serious and irreversible vision loss. The longer you use it the more likely you are to have these side effects. If things stay the same she will not be coming off this medicine anytime soon. There are more seizure medications out there but the side effects are absolutely terrible. We know from experience what these medications can do. We have had a drugged up, zombie like child and do not want to see that again. Her current medications make her sleepy but not able to sleep, aggressive and just in a bad mood for hours after she gets them.  One of the medications we keep getting recommended has caused liver failure (which kills you) in many patients, especially under the age of two. They do routine testing to check if the levels are toxic but once they are there is nothing you can do about it. We don't feel comfortable with these circumstances and won't be trying this with Piper. That doesn't leave many choices. We have been researching for months on other options for Piper and have made some new decisions. We will see what the results say and go from there.

Even with the increase in sezuires, she is mostly happy and in a good mood. She hasn't had a chance to learn a lot of new things but is not regressing so that is good. She is improving with regards to eating, she can eat a variety of textures with no issues. Tonight she had fish sticks and carrots and ate the whole thing! I was very impressed.

For those of you who follow the blog regularly, I would like to add your email to a group list. We have some other issues that I would like to share with you about Piper but would rather not share with the whole world. In the next month I won't be updating the blog as much but will be sending out a group email. Please email me at AnnieKoozer22@gmail so I can add you to the list.

Thanks for the continued prayers, concerns and support! We appreciate you all.

1 comment:

  1. I am Andrew Edwards mother and have followed your story since before Piper was even born. I would like to be included on the email list. Thanks. Our prayers are with your family and precious Piper.