Life Lately.. .and Seizures Suck

As you all know, we had a spectacular fall and early winter! It was better than we could have hoped for with Addie starting school and being "out" more during sick season. Her body was coping well, and while she did catch a couple of bugs, she held her own. A couple of seizures, both making sense but a couple of months apart, were tough but not life changing. Then January 1 came, and she had another seizure. ..then February 22.. another.. and February 29.. .another. Three seizures in 2 months. She had 3 seizures in her first 4 years of life… so 3 in 2 months and five total since she started school.. well, that will alter your lifestyle more than a little bit. We changed her seizure meds after the one in January, and we saw some behavior changes - increased anxiety and huge mood swings - increased struggles at school, and she was extremely nauseous with any increase in dose. Then she had the February seizures, so we're left with a clear understanding that her meds aren't working, like, at all.

She is having seizures earlier in sicknesses and with "lesser" sicknesses now. Previously, she only had them after her body had fought off a major sickness like Hand Foot and Mouth or the Flu.. now she's having them before we even see symptoms of sickness, which leads to a "seek and find" mission in the ER - yes, all five of those seizures required EMT transport to Children's because her seizures last so long. Each time, thankfully, her shunt has checked out, but she has been sick - once with strep and now twice with her most recent sickness, walking pneumonia. So - good news - she still generally only has seizures when she's sick. Bad news - it's with any sickness and there's not always warning anymore. The huge concern is that she tends to have them at night and they never stop on their own. Like never. So, if we don't notice and wake up, she won't stop seizing… Try to sleep with that knowledge. Needless to say, we're all a little on edge and sleep deprived around here these days. Even poor Prince is tense! For a little perspective, in the world of seizures, most last anywhere from a few seconds to a few minutes… but Addie's average 10 - 15 minutes with rescue meds.. so while she may have fewer seizures in her lifetime than some people have in a day, hers are still very much a big deal.

So, what's next? Well, we met with our neuro earlier this week… and we're pulling her out of school for now and going back into "bubble mode" where we don't go to the store, don't take her around crowds, etc. for a while. It breaks my mama heart - school was SO good for her and she loved it so much - but it's necessary. We have to find a seizure med or combination of meds that will work, and until we feel like we have found something that stands a chance of working, it's not safe to send her to school. We have to break this cycle. Not only do we need to get her well and keep her well to prevent seizures while we transition meds, but we need to keep her well so we can help rebuild her confidence and trust. With so many doctor's appointments and trips to the ER, she is terrified - literally in tears - when we pack up just to leave the house. This is her safe place again, and Philip and I are her safe people. So, we're going to huddle up and slowly work on that while we are working through the maze of anti-epileptic drugs (AEDs).. they all have potentially huge negative side effects - we've already been through the ones that have the least. Right now, we're looking at a choice between a drug that is known to decrease appetite (while we're trying to wean her off her Gtube) and reduce your ability to cool yourself off by sweating (as we go into summer.. with our new house with the backyard we bought just so Addie had lots of great outside opportunities) and a drug that is lesser known and while it is being used in pediatrics isn't approved by the FDA for use in pediatrics yet, so its long term effects are still being studied - oh and it's not covered by insurance since it's not FDA approved for peds, so it's insanely expensive.. but it doesn't have nearly the potential side effects. Oh, and neither medicine may work for her. Good times!! :) It takes me back to our bedside conversations with Dr. Buckheit in the NICU - I can still picture him sitting there with his computer and teeny tiny Addie in the isolette - where we discussed weighing the cost with the potential benefit. Addie wasn't even a week old, and I had no idea how many times I would revisit that conversation. It's helped us through a lot of tough decisions, and I'm praying it does again this time.

So, that's life lately! And, as rotten as it has been and as anxious as we are, we know this is just another phase. We've been through enough to know that we'll eventually come out on the other side to something more tolerable, and life will go on.. for now, though, we're just in the weeds. And it's not all bad - she's discovered a love of Paw Patrol and eating popcorn (hello, choking hazard!), and we've hit 75+ degrees the last two days, so we've been able to get out and go for some great walks and adventures. I'm making a point to treasure all this great one on one time with her - one day she will be grown and won't want to go for long walks with her mama. When all else fails, nothing will rebuild your faith in car rides like an Ice Dream Cone from CFA! If you think of it, we would really appreciate your prayers for wisdom, direction and no side effects regardless of what medicine we try next… and that it would work! We want our happy, confident girl back!

Kisses from the Backyard!