We are on our way to CHLA today for a 48 hour video EEG. Yep, that is where we are. We are now dealing with seizures. This has been happening for the past couple of months. We haven’t really discussed it, because we’ve been trying to get a handle on it.
About 2 months ago, we started seeing possible seizures. Once a week for a couple a weeks. Then it was twice a week for a couple of weeks. Then it was daily for a week or so. Then it was one or two seizures a day for a couple of days, then all of a sudden, five seizures, then twelve, then the Emergency Room. Everything was happening so fast, that it was hard to wrap our heads around, what to do, where to go, who to talk to.
The first day that I realized this is where we are headed, I wasn’t even with Maggie, neither was AJ. It was Shelly. As you know, Shelly is Maggie’s aide and at this point, the one person in the world I fully trust with Maggie’s life. Other than AJ or myself, obviously. Shelly had taken Maggie to her speech therapy appointment and I get a text. Maggie had a seizure, bigger than we had been seeing. We are okay, now. So I call Shelly, she tells me the seizure lasted for two minutes, Maggie’s body was limp and she turned blue and unresponsive. We discuss if they should just come home or stay at therapy. We decided she should stay, she was happy and with two people Shelly and Deandra, that truly love her and wouldn’t put her at risk. I trust Shelly’s opinion, that she is fine to stay. I get off the phone. I cry.
We knew it was happening, but so far, the seizures had been small, drop seizures. This was bigger, I had to talk to someone. I called a fellow Rett mom, Stephanie Bohn, and in that moment she helped me get my head together. I was in a fog. What we realized is, I needed a local neurologist, pronto. I thought the neurologists we were seeing would be enough, but to my dismay they weren’t. Seizures are a whole other ball game of issues. Maggie’s neurologist in San Diego, prescribed her some meds, but getting meds just didn’t seem right. We need to physically see someone in LA, right? I need a plan, a seizure action plan. I don’t know what I’m doing, or what to look for, or really what to do, when it comes to seizures. Maybe I was being naive. I knew seizures were a possibility, but I was truly hoping to bypass them.
I spent the next two weeks, speaking to the CHLA Rett Clinic neurologist, Dr. Partikian, he was extremely helpful, he referred me to an epilepsy specialist. I spent all of my extra time trying to get Maggie into the right doctors. At the same time, these were the same two weeks, that the daily seizures started, then multiple seizures then a cluster of seizures in one day. We didn’t have time to wait to get into see a doctor anymore, we had to take her to the Emergency Room. What a shock that was. Everything was happening so fast.
It was a Sunday. We had just been through the longest two weeks of daily seizures, AJ working 16-18 hour days, and me trying to figure out where to take Maggie. One of my closest friends, asked me to go hike. AJ said I should, although Maggie had two seizures that morning. I needed a break. I went hiking with Stephanie Siemiller and I cried. I vented about the seizures and how exhausted I was. I was glad to have the break. We finished our hike, I called AJ on my way home and he tells me, Maggie has had two more seizures, she is lethargic and throwing up. I think she needs to go to the ER. I head home, we decide she should definitely go to the Emergency Room. I call Steph, she comes over to watch Grayden. I shower and head to the hospital to meet AJ. Maggie ends up having 12 seizures that day. I end up staying in the hospital with her for the next couple of days, she has a 24 hour EEG and they monitor her.
Life is tough for us right now. In the midst of all this chaos, I am grateful for my friends and family that really stepped up, to make sure we knew we weren’t alone. Texts, calls, emails, offering to bring me food at the hospital, taking care of Grayden and not to mention a 9 month, super pregnant lady dropping off a surprise bags of clean clothes to wear for Maggie and I. Thank you, everyone.
Needless to say, we now have Maggie on seizure meds. It has been three weeks since our 24 hour EEG. We were told to give the meds two weeks and we should know how Maggie is doing. After the two weeks, I spoke with the doctor. We aren’t having multiple drop seizures anymore, but we have had 4 bigger seizures and Maggie’s breathing is so bad, she is gasping for air, all day long. So here we are. Headed back into the hospital for a longer 48 hour EEG. The team of neurologists want to monitor herbrain, her heart and her breathing. They are hoping to figure something out. I’m hopeful, but also a realist. This is Rett Syndrome and it can be unforgiving. There is no doubt this past year, and especially these past few weeks have really tried us. If you were to ask me “How are you?” If I were to answer honestly, “I feel broken.”
I will keep fighting for my daughter. I will keep fighting for a cure. But…right now, we are just trying to make it through most days and its exhausting.
I hate Rett Syndrome. It really is a monster.