Friday, January 7, 2011

And this world seems so much more hopeful...

On Christmas Eve, Evie had what was her first seizure for at least two weeks. It was also her first seizure in public. We had gone out to breakfast with my 80 year old handicapped grandmother and aunt, who had made the trip from Charleston to see Evie for the very first time. We were waiting to be seated at Cracker Barrel and were browsing the Christmas goods when Dave signaled to me that she was having a seizure. We stood in the corner and held her between us. On a positive note, the sweet little moments we spend together soothing her during a seizure are so precious and so bittersweet, I almost cherish them. This seizure marked a turning point in how we see her seizures. They are starting to become just a part of our life. The world doesn't stop when they occur, it just slows for an instant. That being said, whereas a seizure is no longer a panicked and adrenaline filled event for us, I did let a tear fall as I sat in the corner of the restaurant trying to comfort postictal Evie because her latch was too weak for her to nurse and comfort herself.

Since then, she has had 4 seizures. Two last Thursday, one Saturday, and one Wednesday while I was driving her (by myself) to the neurologist.

The neurologist explained to me that at this point, we are looking at four different possible causes for her seizures.

First, we may not be successfully keeping her medicine dosage on track with her growth. We decided that we would keep her dosage at .60 Mg of medicine per Kg of her weight. Her build up of medicine had dropped to .45 Mg/ Kg. This means constant adjustments and a biweekly visit with him.

Second, her seizures may be of the variety that they are not being addressed by the medicine she is on. After viewing a few videos I managed to take
of her seizures (I will try to post one soon), he made the observation that she seems to be having more activity on the right side of her body, which would mean that the epileptic activity is on the left side of her brain. There is a medication that would address that issue quite effectively, but would only benefit her if we were absolutely certain that was the case. If it weren't the case, using it too early could cause infantile spasms, developmental delays, more seizures, and even brain damage. The only way to tell if her epileptic activity is in fact, exclusive to the left side of her brain is with careful monitoring by EEG, which will be done at her biweekly visits. Even if we find this is true, we have to ask the question, which is worse, the seizures or their medicine?

Third, she may have an issue that cannot be addressed by anti-seizure medicine at all. This could include a metabolic deficiency which can be tested by more blood work and a spinal tap. He believes that this would be unlikely because she is on track developmentally and physically (within the context of her current medication). However, whereas a spinal tap and the general anesthesia that would accompany it may be the most intrusive procedure for testing, the treatment for a deficiency, a vitamin for instance, would be the least detrimental. A spinal tap is scheduled for February 1st.

Fourth, there could be something that is physically causing the seizures that cannot be addressed with medication, a microscopic brain abnormality or growth (read tumor) that could not be seen (even by what he said were the dozens of doctors he has shown it to) in her MRI because her brain is so immature. This would include the possibility of tuberous sclerosis, which he is revisiting. A dilated eye exam is on the books and a follow up MRI will be scheduled in two months to re-examine her brain and with it another round of general anesthesia.

It has to be said that it is somewhat ironic that I avoided anesthesia like the plague when I was birthing in my attempt to protect her and now there is no avoiding it for us and it really is a lesser evil at this point.

I guess it's obvious which of these possibilities I would choose if I could. Although it's unlikely, what a blessing it would be to be able to give her a vitamin and have this all go away. Of course, weighing probability against preference, I can only hope she's outgrowing her dosage, but that doesn't save her from a multitude of tests. We can only wait and see... and suffer a constant, simmering anxiety for the foreseeable future.

Through this all though, and issues with Dave's family I cannot yet bring myself to write about they are so painful, we have been blessed with a multitude of caring friends and even strangers. It's little things like the constant reassurance of close friends and family, sweet letters, messages, and calls from friends from the past, and delightful little surprises and prayers from complete strangers that get us through. Thank you for encouraging and supporting us as we rebuild the world that we felt crash around us.

One of the delightful surprises from Tracie Knight Birch.


  1. You are such a strong mama. And I love that photo--the two of you are beautiful together!

  2. Beautiful photo! I really love it. And I love Evie. I know, no matter what the diagnosis ends up being, that she will be wonderful. Because she has some pretty amazing (and strong) parents that will make sure of it. I'm so glad you are my friend!

  3. Lots of hugs and love to you guys. You are both amazingly strong to be dealt such a hand and to deal with it with such grace. Please don't hesitate to ask if there is anything we can do.

  4. I realize that you haven't posted on this blog in years, but I came across it when I searched for "Epilepsy and baby wearing." My daughter is just now 2 months old and had her first seizures last week. She has experience a battery of tests similar to the ones you have written about. I haven't been able to find anyone else who has parented a baby with seizures so young. I'm so overwhelmed by sadness and grief that I'm having a difficult time even wanting to get out of the house. If you happen to see this and wouldn't mind emailing me, I would really appreciate it. We seem to have a lot in common.. Take care and Merry Christmas.. Jackie ( ** Note that my email ends in .CA and not .COM. :)