In my last post, I said I’d mainly update y’all if there were major changes or events. So today on my 35th birthday, I thought I’d check in and let you know what we’ve been up to…..
We have bought a new home and moved. We couldn’t be happier with it and we are so relieved to be out of our rental. Both my parents came to help with the move and we were able to do it with virtually no disruption to Maddie’s school and therapy schedule, which was really important to us.
We also had help from Maddie’s new babysitter. For years, I’ve tried to manage everything day to day on my own, but with her extremely busy schedule of school and therapies in our home, I barely have time to keep up with grocery shopping and meals. We finally found a CNA who Maddie really loves and who I feel I can trust to take good care of our little princess. So for a few hours most days, I have help now and it has been amazing.
There has also been a major change to Maddie’s schedule. Though she is still waking some during the night or a little too early in the mornings, she has been on a pretty normal sleep schedule a few days after my last post in mid January. We saw a sleep neurologist at Duke who really listened to my explanation of what was going on and with just a few little tweaks to our bedtime routine, her melatonin dose, and her morning seizure med timing, we have found a successful method for maintaining a normal bedtime.
It’s been a truly life changing improvement for the whole family. It means that for the first time since Maddie developed epilepsy over 4 years ago that Brandon and I know we’ll actually get to see each other every day (that he’s in town). We can actually eat meals together and have time just with each other after her bedtime. When her schedule was constantly moving, for 2 weeks of each month I needed to be asleep when he was home from work so it meant lots of tiptoeing around the house and barely seeing each other.
We are so thankful that the sleep issue was fixable. After so long with crazy sleep we were concerned that’s just how it would always be and that was pretty depressing.
Stabilizing her sleep has been great for many reasons, including her seizures. She has always had seizures tied to sleepiness so now that she is sleeping better, she has less of the clusters of drops than she was before. Unfortunately, her bigger seizures, the long tonic ones, have not gotten better at all. They vary widely and it is really frustrating as I just can’t seem to figure out why some days are terrible and others are great.
We recently began a trial of a new medicine, Zonegran. Actually she had taken it 3 years ago with some success, so we wanted to see how it would work in combination with her 2 other seizure meds. It is considered one of the safest, most used drugs out there for kids. After the second dose, Maddie began having a cluster of seizures that would not stop. It went on for hours before I finally was sure of what was happening and that there weren’t really breaks between them. And we had to give Diastat, an emergency seizure rescue medicine. Even that took a while to work which really scared me.
When trying a seizure med that has worked for your child before has such scary results, it makes you afraid to try anything new. But we have to find something to help her. She will never develop AND it’s really difficult to keep her safe when she is having seizures so often every day.
So our next step is to consider the surgical options available to her. The Vagus Nerve Stimulator is what one Neuro suggests, but the other isn’t super enthusiastic about for her. Another possibility, the Corpus Collosotomy, is a surgical procedure that might improve her quality of life (make her seizures less dangerous) but which probably won’t help with development in a meaningful way.
Both of these options could be done by a Neurosurgeon at Duke. But both scare me and don’t offer a tremendous upside. We have appointments May 28 with the Duke Neurologist and Neurosurgeon to talk about these options and come up with a plan.
But because we are not particularly enthralled with either option (though I feel they are really all we have left), we are taking a quick trip up to Detroit again on Monday. For those of you who’ve followed Maddie’s story for years, you remember our trip to Detroit in 2009 where we hoped to find Maddie to be a surgical candidate for some type of resection or a complete hemispherectomy. Those surgical options, though much more invasive, have better outcomes developmentally than the other options we are considering. She would only be found to be a candidate for either of those if diagnostic testing suggested an area of the brain that might be the cause of her seizures, which could be safely removed without too much loss of function.
None of Maddie’s current neurologists think she would be a candidate for those types of surgery, but before we move forward with the very permanent Corpus Collosotomy, we want to make absolutely sure. So Monday morning, Brandon, Maddie, my mom and I will all fly to Detroit where Maddie will have an overnight EEG and a PET scan under sedation Tuesday. Then we’ll meet with the famous Dr Chugani Tuesday afternoon and then fly back to Raleigh. I’m not getting my hopes up that he’ll be able to help her, but we feel it’s worth a shot. Even if she is again found not to be a candidate for surgery there, it’s always nice to get another opinion, and he’s certainly got the experience with kids with her type of epilepsy.
So in closing, on my 35th birthday, I can’t help but think back to my 30th. We were in the midst of tough chemo for Maddie and I truly didn’t know if my daughter would survive her battle with leukemia. Five years later we are in a very different place than I expected……because her seizures had not begun yet and she was a normally developing 18 month old then. But I am nonetheless extremely thankful for where we are and that she is a five plus year survivor of her poor prognosis leukemia. While I long for her to catch a break and to find a cure for her epilepsy so that she can know what it is to truly enjoy life, when I think about what a happy little girl she is, I know that we can manage however this all plays out.
For those of you that pray, we’d love prayers for safe travel and that we get some positive way forward in Detroit.
A few pics from Easter:
Love to everyone,
Liz, Brandon, and Maddie