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!
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2 comments:
Reagan is on Banzel. It was "the one" for her that finally worked. One thing we noticed with her is that in the beginning her seizures actually got worse. We were this close to taking her off of it, but her doctor checked her levels and they were still very low, so he continued to increase the Banzel beyond what he normally would have prescribed. And it worked. So just keep that in mind. Sometimes kids metabolize it differently and need a higher dose! I hope this works for her!!
Hello,
My name is Joanne and I'm a new visitor to your blog. I have a daughter who is 12 who has Sanfilippo Syndrome, and a fellow Sanfilippo parent introduced me here. Our epilepsy situation and lack of seizure control, as well as increased seizure frequency over the years is so similar to that which you write about with your daughter. I hope to pop by from time to time and maybe find some helpful tips and hope to be able to have some to share as well.
Wishing you all health in the new year, Joanne Huff
www.caringbridge.org/visit/sashasegal
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