Tuesday, April 4, 2017

An Epilepsy Update

Obviously I've been woefully negligent of this poor little blog. Life has found a balance of normal for us around the hydrocephalus, as many hydro moms told me it would when we were diagnosed. Days go by where we don't think about Addie's shunt or use the word hydrocephalus in conversations. We are thankful that we have the luxury of time behind us and hindsight and adjustment to what has truly become our new norm.

Addie is in school (private kinder) and loves it. We decided at the beginning of this school year to repeat her in Kinder for a myriad of reasons but the main one being she is a young 5 yo with a May birthday and considering the rough start to life she had over the first few months after she was born, she's really more like a September baby so holding her back made sense on a lot of levels. We are realistic that more time will not mean her delays will magically erase themselves but we do believe that giving her a rock solid kinder readiness skill set will only benefit her in the academic hurdles that await her as she grows up.

The most frequent flyer doctor we've seen over the last two years has been her neurologist. We actually changed neurologists in August of last year and love our new doc. Which is a good thing because I have a feeling we will be spending a lot of time with him. Addie's seizures have been quite stubborn over the last year and half. She had been having headaches -- about two a month -- that we finally connected to being post ictal migraines after a prolonged over night seizure we were missing. Addie's seizures are quiet and she doesn't move a lot with them so they are incredibly hard to detect on seizure monitors. We increased her existing med (a process that took quite a while because she was still on the same dose that she had been on for two years) that she had been taking since she was first diagnosed and had 6 weeks of seizure control. No migraines, no seizures. We were thrilled. Until November 1, 2015 when she fell off her bar stool, hit her head, and immediately began vomiting. We took her to the ER for a CT and in the process she was up past her bedtime by a number of hours. This, we would later realize, was a big rock in her seizure pond and caused ripples that took a while to calm back down in her brain. Addie's seizures are incredibly related to sleep. 99% of them occur while either falling asleep or waking up. When we had the ER visit, we inadvertently triggered a round of seizures that neuro added another med to her regime to counteract. Hindsight being what it is, that was probably the wrong decision. He assumed (and I feared)  her epilepsy suddenly got worse when we really should have looked at the fall and sleep deprivation as an event to let her recover from before adding more meds.

Fast forward to now after a year of tracking seizures: seeing increased seizure activity, seeing changed seizure activity, and seeing six week 'honeymoon' phases before her seizures would return. We are now looking at beginning testing to see what else we can do for her seizures. On one hand --  we realize how blessed we are that Addie is averaging  just 2 seizures a month when I know so many children who battle hundreds a day. But we are also to the point that we know we have to look at Addie's quality of life and trying to get her seizures under control more than they are would 100% be better for her. Plus if there's a chance she's on the wrong type of meds for her seizures or if the meds themselves are causing some of the issues (which is what we suspect with the second med she's on), we would be remiss not to investigate it, no matter how scary.

So after today's neuro appt., her new neurologist (have I mentioned how much we love him?!) wants a five day in patient EEG where she will wear a back pack that transmits the EEG data and she can be up and moving around and playing and then sleeping (the biggie) in the hospital. The hope is to capture some great data to see what is really going on in her brain when she has a seizure. He suspects (as do I) that the type of seizures she's having are not what the medicine she is on is designed to treat. This would also be the first step toward testing for epilepsy surgery should be elect to go down that path in the future.

I felt it was time to resurrect her blog for now as we may have some big updates to share with family in the following weeks and months and did not want them to come out of no where!

She's our miracle girl and the light of our lives and we are so honored to be her family. Hoping and praying this is the right next step for her journey.