Jenelle's Journey

We met with Dr. Shields at UCLA yesterday to update him on Jenelle. He is going have us come back up in the next two weeks to run some more tests. He wants his own 24 hour Video EEG, another MRI and a PET scan, which is a type of scan used to show activity in the brain - Jenelle hasn't had one yet. We brought him up to date on Jenelle's seizures and her developmental status since our last visit in September, and he really zoned in on the fact that Jenelle favors her left side (something she has done since she was only days old.) He said that is probably a very big clue that there is probably something wrong with the left hemisphere of her brain.

He mentioned that surgery to remove part or half of her brain is now an option, and one that has a very short window of opportunity. They prefer to do this surgery between ages 18 months and 2 years of age so there is a better developmental outcome. I reminded him that last time we saw him, he said surgery wasn't an option, and he agreed that was true for Infantile Spasms, but says that she has probably grown past that now. He said that UCLA is the leader in the country right now for performing a new surgery on patients with generalized seizures (seizures that come from all parts of the brain) and that they have been very successful. He wants to run the tests first to determine if she is a good candidate, and also said we still can't rule out the Ketogenic Diet or a Vagal Nerve Stimulator (VNS) which is like a pace maker for the brain - a device that short circuits the seizures before they happen. The problem with the Diet is that UCLA has a very, very long waiting list, and he also agrees somewhat with Dr. Phillips in that she may not be metabolically stable to start it. He said we would probably never be able to pinpoint an exact metabolic problem with Jenelle. He thought she was pretty delayed developmentally, but that most likely her abnormal EEG (the Hyppsarythmia pattern) is the cause of her delays. Once we can give her some normal brain waves, she may start to progress. Continuing on her drugs may also be an option.

Seven months ago, when we were first introduced to seizures and Jenelle's diagnosis, I read all about surgical solutions I wanted to vomit. I couldn't imagine making such a decision as to agree to let doctors remove half your child's brain. However, now that we're on our 5th drug and all the difficulties we've encountered in the past few months, I realize it may be her best option if it looks like something that she could benefit from. He said before making that decision, he would have us meet with families that have done the surgery, as well as other counselors that will help us make that decision. I got a message last night from a parent that had the surgery done for her child, and she say it is "frightening but awesome" at the same time. This Mother told me that upon waking from surgery, it was very apparent that her child was already doing better and controlling both sides of the body very well. In fact, the side of the brain they removed had not been working, so the "good" side of his brain had already started to compensate and was already controlling the other side of the body. They said the PET scan made their decision very obvious in that they knew the one side of the brain wasn't working. Her son is walking, talking and living a normal life. If we must choose surgery, I hope our tests are just as obvious.

So, for now we're just waiting to hear from UCLA as to when we need to come back for testing. He said their hospital was full right now with RSV patients, but it would most likely been in the next two weeks. We need to move quickly, since Jenelle is almost 17 months old and we are quickly approaching the "window of opportunity."