In the last few weeks, Jenelle's seizures have gone from having a "big one" every two weeks, to having a "big one" weekly, to now having lengthy seizures every other day. She continues to have long tonic seizures that go over two minutes and often end transitioning into a grand mal. School has seen this seizure, as well as her daycare provider. Both agree, these tonic seizures are horrific to watch as every muscle in Jenelle's body contract and stiffen during the seizure. Poor thing has also been very lethargic often taking 3 or more naps a day this past weekend. I can't help but wonder if she is napping because of the new medication, or if she is napping because her little body is tired from so many seizures.
Over the weekend, I had a revelation about Jenelle that prompted me to use my secret "back line" to Dr. Shields today. Using the general line to get in touch with him can often take a few days for a return call, if you get a return call at all. I sent an e-mail to his nurses this afternoon and spoke to Dr. Shields this evening on my drive home from work. He agreed her seizures were going in the wrong direction and that we needed to be more aggressive with getting her onto Banzel. Instead of increasing it every two weeks, he wants to increase weekly to see how it goes. We'll start that increase tonight.
As for my revelation over the weekend, Dr. Shields was very intrigued. At a holiday dinner on Saturday, I was talking with a new friend who is a physical therapist and into holistic nutrition. We talked a bit about Jenelle and he asked me lots of questions about Jenelle's vitamin intake. My response was, "Well, she is not taking any supplements right now, however, we usually don't have to worry about that because she is eating so well by mouth. She used to get all of her needed vitamins from her formula." Then it hit me. We took Jenelle off formula in May, coincidentally around the same time Jenelle's seizures started to get worse. Could it possibly be a simple vitamin deficiency has been causing all this havoc with her seizures?
Like I said, Dr. Shields was intrigued with this idea and agreed it was something to consider. He gave me instructions this evening to start giving Jenelle 100mg Vitamin B6 a day; 50 mg in the morning, 50 at night. He said that Vitamin B6 seems to have the most connection in causing seizures, and if we add that and see a significant difference, we may be onto something.
So while the increase of seizures has been disappointing of late, we now have a new plan. Please keep us in your special thoughts and prayers that her seizures do not get worse. The last thing I want this holiday is a hospital stay. I will continue to keep you all posted. Thanks in advance for the thoughts and prayers!