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.

Whole Lotta Shakin'...Act One

Might as well rip the band-aid off...

Oww, oww, owwwwww!

Rae is epileptic. I'd like to say that I'm in some state of shock or in denial about her most recent diagnosis, but I'm not. Instead, I have jumped off the high dive, in full on free fall, holding my nose closed with my fingers, waiting to be smacked by the hard, cold water and hoping for the best.

Here's the backstory:

Rae had tremors when she was only a few months old. I mentioned it to our PCP and he felt it was normal given the situation in which they occurred (usually right when she woke up). We were all fairly confident that she was having some kind of startle reaction to whatever environment she found herself when upon opening her eyes. Oops!

I later mentioned this again to our Neurologist (at six months), but once again he felt that was perfectly normal give her age and it was not anything to be too concerned about at this time. Double Oops!!

Months pass....

My husband was still concerned about the tremors and I was in some sort of denial and still believed that maybe (knock on wood) they weren't anything serious and still just some kind of startle response. Now I'm mentally flogging myself because I was wrong. My gut was right, but my actions were totally wrong.

It wasn't until I started talking to an employee of our local Babies R Us, whose daughter is epileptic, that I began to seriously doubt what we were actually dealing with and began believing she was having (gulp!)...SEIZURES! After I described what Rae was doing, the woman advised me to record the tremors and take them to the doctor. It would be easier to show them what was happening because unless she had a seizure while in their office or during testing they wouldn't know what was actually going on. That's when I started climbing the ladder of the high dive.

I went home, charged my video camera, dumped all previously recorded videos into my computer, made an appointment with Dr. A for the following week and waited. In order to ensure that I captured the tremors on video, I made Rae nap in our living room. During that time, I discovered that she was having these episodes way more often than I believed. Almost EVERY nap time she would awaken suddenly, get a vacant look in her eyes, and shake...all over. I wept.

After a few more videos, some minor editing, and uploading the compilation to my Nook I was ready for our appointment with Dr. A...or at least I thought I was. When he viewed my video he was instantly concerned, stepped outside to place a call to our neuro, Dr. H, and wanted to have an EEG done asap...(big gulp!)...my mind was screaming, "That can't be good!" In a matter of minutes, we were scheduled for a sleep deprived EEG at 2 that afternoon. Now I just had to keep her awake till then, which is usually not a problem since she hasn't been napping till 3 or 4, but of course today had to be the day that she wanted a nap.

The video is a tad long and the final clip is to show that it wasn't noise or touch waking her.

I make arrangements for Mimi, my Mom, to ride to the children's hospital with me so she could keep Rae awake. That worked perfectly until we reached the parking garage. We waited for like five minutes for a woman to evacuate her space. I swear she was twiddling her thumbs. That's when Rae chose to nod off...she was out in an instant (crap, crap, crap). I threw my truck into park, hopped out of the drivers seat, flung the back door open, desperately unlocked her 5-point harness (while Mimi was rubbing her face with a cold wet towel), lifted her out of the car and started swinging her in the air. I'm sure the three car caravan behind me thought I had lost my mind. Once I passed Rae off to Mimi, I took my place back behind the wheel and proceeded to beep my horn at the oblivious women in the SUV. I was never happier to see reverse light trigger. FINALLY!!

Well, much to Rae's displeasure. we made it to the hospital and she was still awake. Now we had to get past registration and through the EEG... All I can think while walking the plank is, "I sure hope I don't belly flop."

*Shakin' Part 2 coming soon...