Tuesday, October 23, 2012

An Epileptic Adventure

In March, we learned that Rae was epileptic (read about it: Act I, Act II, and Act III) and it really shook me up (no pun intended) because she had been having seizures since she was less than five months old. I just thought she was being startled.

Since then, we have changed medications once (from Keppra to Trileptal) and steadily increased her dosage. Unfortunately, back in June, we maxed out the amount of Trileptal that Rae is allowed. We were given a prescription for a medication called Zonegran, which would work in conjunction with the Trileptal in hopes of preventing any additional seizures (not a guarantee, this process is all trial and error). We had reservations about adding the Zonegran and I consulted doctors, nurses, other parents, and my sister-in-law. Our biggest concern centered around the potential for Rae to develop kidney stones. One component that creates kidney stones is lack of adequate fluid intake. Great!

Rae with Auntie Nona.
Rae, on a good day, will take two 8oz bottles. On a great day, she'll take three. On a bad day, well...I resort to Pedialyte and Pediasure and hope I can get her to take at least one full bottle. Of course, on those bad days, I supplement with watery foods like applesauce or purees. I'll give her pure juice if I think she'll drink it. When I'm really desperate, I cave and hold her (and her bottle) while she drinks just to make sure she is swallowing and not playing. Some days, coaxing Rae to drink is about all I manage to accomplish (thank God my husband understands).

When we took this into consideration, we decided to not add the Zonegran, not yet at least. We felt the very small, seemingly infrequent seizures she was having weren't severe enough to risk the side effects. A second MRI was completed in May and it showed no changes in her brain. That told us that the seizures she was having weren't causing any damage (at least at this point...knock on wood). It looked like the seizures plateaued. Of course, that didn't last long.

In the last month or so, we have witnessed an increase in the intensity of Rae's seizures. It isn't completely impossible for her to have one that is stronger than another; so, I observed her when she was sleeping (she only has them she she is asleep) and I started thinking maybe it was time to consider adding the Zonegran, but I was still on the fence. Then I spoke with my cousin (who is also epileptic) and she told me about a seizure she recently had that left her body sore for days afterward. This got me thinking about how Rae's body felt after a seizure. It's not like she can tell me how she feels (she's non-verbal). I started leaning over towards adding the Zonegran even more. Next, I read a post from another mother in my Hypotonia support group whose daughter also has seizures and she noted that after having a small one her daughter would regress developmentally. Then a bigger seizure seemed to "reset" her daughter's brain and she was able to do things like pulling up to stand. I don't think if Rae has a big seizure she'll start crawling, but they are probably impacting her development (something else to consider...I leaned even more). Lastly, for two nights in a row, Rae has fallen asleep in the living room only to suddenly wake with considerably stronger, more intense seizures that are lasting at best for 30 seconds. This is two to three times longer than the seizures she exhibited over the summer. At this point, I officially jumped the fence.

After discussing a change in course with my husband, we have made the decision to add Zonegran. This was not a decision that was made lightly and it hurts my heart. Tonight we start the 4 week process of adding Zonegran to Rae's daily medicine regiment. Say some prayers for us because we don't really know how this new course of action will effect her.

1 comment:

  1. Tons of prayers and good thoughts for you, Rae and family through this difficult decision and time. My Danielle was on a combination of Tegretol and Valium for seizure control and it seemed effective during her waking hours but we were advised that considering the severity of her brain damage, she would never be seizure free and was in fact seizing during sleep. It's so hard making these decisions. We're damned if we do and damned if we don't. All these anti-consulvant meds have their ugly side effects. I remember when they first prescribed Tegretol, I looked it up in the PDR, and immediately called the neuro, almost hysterical, asking what was worse the med or the seizures! I hope the new med is effective for Rae and that they can keep the dose low and she tolerates it well. Will they be doing labs to follow kidney and liver profiles, ect? I'll be sending up some extra prayers that all goes well. Try to get some rest sweety, I know you're exhausted. God Bless.