Seizures, ugh?!

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.

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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.

 

 

14 thoughts on “Seizures, ugh?!

  • Oh crap! I feel your pain and have been there. Seizures are scary and suck…BIG TIME! I am so sorry this is happening but so glad you will get some answers and are in the right place. Maggie is so strong and obviously gets so much of that from you and AJ. She’ll fight it as hard as you and pull thru again. Ellie is on Keppra and it’s stopped everything. No cluster seizures and nothing else I can see. I hope you can get it under control quickly. Sending you all love and strength from rainy Seattle! Maggie is our hero! ❤

    • hi Heidi,
      I’m glad that Ellie’s seizures are under control with Keppra. It seems to have helped, but we have had a few breakthrough seizures. Fingers crossed. Sending you love and strength from sunny LA.

  • Ughghhhhghghghaaaa is right. I’m so beyond sad to read that you all are now dealing with seizures. We love you guys and please let us know if we can help in any way. I love seeing that photo of Maggie smiling and you ARE such a fighter. I’m in awe. Kisses to all.

  • I’m so sorry….there is not one part of the body or life itself that the Rett monster doesn’t touch. Breaks my heart that sweet, little Maggie has to deal with this now. God bless you all as you figure this out – and you will…you are strong, and she is strong.

  • You are amazing Jenny. I am in awe of you and AJ and Maggie. I am sending you love and light and peace. You are so strong.

  • When can she start the medication that seemed to show positive results…from that trial she was in a couple of months (?) ago???That’s when (I think AJ posted) that you guys were pretty sure she was taking a plecebo.
    I have read articles that marijuana (PHOENIX TEARS) helps some people with seizure. Is this a possibility?

    • Hi Marcia,
      The trial she was in starts Phase 3 in 2018. So it will be a bit until that mediation is on the market. We are hopeful that the trial proves effective and she will be able to have the meds at some point.

  • Rett is unforgiving and just keeps taking. I know it is a cliche, but in times like this all you can do is take each day, each moment at a time.

  • Thanks for sharing. It is painful to feel broken and to admit it. The fact that you can still open up and share all this mess shows how incredibly strong you are. I love and admire you and AJ so much. Y’all are great parents and beautiful, resilient people.

    Maggie has an amazing smile, especially considering the hell her body is going through.

    In the midst of all this Good Friday gloom, may you have some peace, light, and joy this Easter.

  • I am so sorry for what is happening to Maggie and can’t imagine what you and AJ, as well as the rest of the family, are going through watching these latest developments. She is so blessed to have you for parents and fortunate that so many others are reaching out to offer support in anyway they can. We all know that you and AJ are strong and that Maggie is a fighter. Just look at her beautiful smile. I pray that God will put the right people in your path during this difficult journey to help stabilize her condition and result in more positive outcomes. Thoughts, prayers and love to all.

  • I read your post and feel sad and get angry. But at the same time I also feel so much admiration for you and AJ. Your strength shines through in Maggie’s sweet, warm smile which makes me feel her love. All of you guys are rock stars!

  • I am so sorry to that seizures got to Maggie. They are without a doubt my least favorite part of Rett. After years of them they still can cripple me. Sending our love and hating rett with you xx

    • Thanks Colleen. You are such a source of strength, we appreciate all that you do. Let’s hate Rett together.

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