Kelly and Chris describe their initial hesitation to change their treatment plan, how ZTALMY has led to fewer seizures for Evie, and the positive impact this has had on her and their family.
Evie is living with CDD. Her family was compensated for sharing their story.
Kelly: Chaos is our normal.
Chris: Having a 5-year-old has its own chaos attached to it. But then with Evie running around, pulling things off of shelves, messing with our 13-year- old’s stuff, everything's always balancing on the knife's edge. And that's just how it is.
Kelly: A good day for Evie means a very busy day for me and Chris, because we are going to be moving and we are going to be getting our steps in today.
It's a good day when Evie's up and walking around, right? And she's happy.
Chris: If I'm making food and she comes over and grabs a bowl and pulls all of it onto the floor and makes a mess, that's a good thing. That's what we want. I just think she's exploring her world when she does things like that. She's trying to figure out her environment. And most of all, it means she's feeling good.
Kelly: Evie is 11 years old, and cognitively, she's around 7 or 8 months. As much as we're so proud of her and so thankful that she is mobile and able to move around and do all of these things, it's very dangerous.
Kelly: Step. Step. Whoa!
Chris: She walks around with her helmet on when we're in an environment that she's not familiar with, or when we know that we're going to give her a little bit more freedom. But she falls. Sometimes she falls and scrapes her knee. Sometimes she falls and splits open her chin. And when she falls, she gets back up. But in order to protect her from those things would be taking away that freedom, that running around that she just loves to do. And it's not worth it.
Kelly: Uh oh. Look who stole your seat.
Kelly: A great day can turn on a dime and an instant with a seizure. You could have the best laid plans in the world, and a seizure can change that.
Chris: When something goes wrong with her, it's all hands on deck. And we have to go to the hospital or spend the day sitting on the couch, taking turns taking care of her.
Kelly: She is the toughest kid I know. She takes everything in stride. I mean, kids are resilient, but Evie is a whole other level of resilient.
Chris: When the seizures are at their worst, they're just stifling. She's too tired. She's exhausted. She can't eat. She can't engage.
Kelly: We kind of lost her for a little bit there in terms of like her interaction with the family and her personality.
Chris: The seizures were taking away so much from her. She was just sleeping through her days.
Announcer: ZTALMY is a prescription medicine used to treat seizures associated with CDKL5 deficiency disorder (CDD) in people 2 years of age and older. It is not known if ZTALMY is safe and effective in children under 2 years of age.
Kelly: Our neurologist was very excited about ZTALMY. She sat us down and she said it's specifically for kids with CDD. But there was a lot of hesitation to begin with. With any other treatments we've tried, you know, you might see a little bit of a benefit very early on, but most of the time that benefit goes away.
Chris: Naturally, your brain goes back to all those other medicines that you've crossed off the list over the years.
Kelly: Did you have a good day? Are you so happy to see daddy?
Kelly: We don't want to get high hopes over anything because the letdown is heartbreaking. We thought about it, and we had talked to some of the other parents in our community that were using ZTALMY for their kid, and we said, okay, let's see how this goes.
Announcer: ZTALMY can cause serious side effects, including sleepiness and suicidal thoughts or actions. The most common side effects include sleepiness, fever, drooling, and seasonal allergy.
Kelly: Our neurologist advised us to titrate very slowly in the beginning. It was a nice, slow process that we felt comfortable with.
Kelly: She talked to us about the side effects that could potentially happen. And you know, you make choices for your kids every day. But a medication, that's a huge decision.
Chris: Because we trust her neurologist so much, we knew that that was what was going to be what was best for Evie, was to take this leap and hope that it was going to work the way it has.
Kelly: Once we added ZTALMY to her treatment plan, we did notice fewer seizures over time.
Chris: Having a good day at the park?
Kelly: With fewer seizures, Evie is able to participate more in school. She's able to participate more with our family.
Chris: We went to our first movie the other day as a family and sat in the theater. All of us together. Simple things like that, that were never an option before.
Kelly: Fewer seizures means that we get a smiling kid. It's like getting to know your kid all over again.
Chris: Her personality was lost for a while and we got it back. Yeah, we got our daughter's smile back. That's invaluable.
Kelly: Yeah. She's cheering for you!
Kelly: There she is. Oh. Thank you.
Kelly: Evie has been through a lot. Through hospitalizations, through seizure after seizure. And all she knows to do is to get back up again and go for it. And that's one of the things I think Evie has taught us. Everybody has a bad day, but you got to pick yourself up and move on and find your way through it and get to the other side.
Chris: Let's go, let's go.
“The seizures are less frequent, and that’s made all the difference.”
— Chris, Evie’s dad
The decision to make a change to Evie’s treatment regimen didn’t come easily for Kelly and Chris. They were hesitant to try a different medication after their past experiences, but embracing Evie’s resilience, they found the courage to take the leap. Since starting ZTALMY, Evie is having fewer seizures, which has helped her to participate more in school and family activities—exploring her world in ways that make her and her parents happy.
Sleepiness: ZTALMY may cause sleepiness. Taking ZTALMY with central nervous system (CNS) depressants including alcohol may increase sleepiness. Do not drive, operate heavy machinery, or do other dangerous activities until you know how ZTALMY affects you or your child.
ZTALMY can cause serious side effects, including:
Sleepiness: ZTALMY may cause sleepiness. Taking ZTALMY with central nervous system (CNS) depressants including alcohol may increase sleepiness. Do not drive, operate heavy machinery, or do other dangerous activities until you know how ZTALMY affects you or your child.
Suicidal Thoughts or Actions: Like all other antiepileptic drugs, ZTALMY may cause suicidal thoughts or actions in a very small number of people, about 1 in 500. Call your healthcare provider right away if you or your child have any of these symptoms, especially if they are new, worse, or worry you:
Pay attention to changes, especially sudden changes in mood, behaviors, thoughts, or feelings. Keep all follow-up visits with your healthcare provider as scheduled.
Stopping ZTALMY: Do not stop taking ZTALMY without first talking to your healthcare provider. Stopping ZTALMY suddenly can cause you or your child to have seizures more often or seizures that do not stop (status epilepticus).
Before taking ZTALMY, tell your healthcare provider about all of your or your child’s medical conditions, including if you or your child:
Tell your healthcare provider about all the medicines you or your child take, including prescription and over-the-counter medicines, vitamins, and herbal supplements. ZTALMY may affect the way other medicines work, and other medicines may affect how ZTALMY works. Do not stop or start taking other medicines without talking to your healthcare provider.
Especially tell your healthcare provider if you or your child take: alcohol; opioids; antidepressants.
Know the medicines you or your child take. Keep a list of them to show your healthcare provider or pharmacist when you or your child get a new medicine.
Do not drive, operate heavy machinery, or do other dangerous activities until you know how ZTALMY affects you or your child. ZTALMY may cause you or your child to feel sleepy.
See "What is the most important information I should know about ZTALMY?"
The most common side effects of ZTALMY include:
These are not all of the possible side effects of ZTALMY. For more information ask your healthcare provider or pharmacist. Tell your healthcare provider about any side effect that bothers you or your child or that does not go away. Call your doctor for medical advice about side effects. You may report side effects to the FDA at www.fda.gov/medwatch or 1-800-FDA-1088. You may also contact Marinus Pharmaceuticals at 844-627-4687.
For additional information, please click here for Medication Guide and Instructions for Use and discuss with your doctor.