CDKL5 in Color

Seizure Action Plan Awareness Week is Feb 10-17, 2025 and in this latest episode we talk about seizure action planning basics and share our experiences developing these specialized plans for our loved ones with CDKL5 Deficiency Disorder. We also share some personal tales about others’ reactions to our kids' seizures and reflect on the realities we manage as our “normal” living with a severe refractory epilepsy. SHOW NOTES Check out our website and sign up for our quarterly newsletter at

How familiar are you with rare disease advocacy? In episode 7 we talk about how advocacy impacts drug development as well as how it impacts the social systems our children are a part of. We share ways to get involved with organizations that champion rare diseases and encourage you to get out there and share your challenges and needs with those who can make a difference. We also share about a Rare Disease Day giveaway we are running all month long!SHOW NOTES Check out our website and sign up for our

In this latest podcast episode, we delve into the challenges of managing constipation in CDKL5 Deficiency Disorder. We share our personal experiences, discuss why constipation is a common issue for individuals with this rare disease, and suggest practical tips and strategies that you can consider with your child’s doctor.Adequate Hydration! Getting our kids moving or standing, tummy massage. Dietary changes, over the counter remedies, and prescription meds. Shout out to the caregivers

Deshaun is a sweetheart CDKL5 mama whose positive attitude will make you smile. She is a champion of accessing mental health support and talks about how prioritizing her own mental health has made a profound impact on her life. Hope you enjoy learning a bit about her life and her son, Braylon, who is a music lover like his mama!SHOW NOTES Follow us @CDKL5inColor on Instagram, Facebook, LinkedIn, Blue Sky, & YouTube! Check out our website www.CDKL5inColor.com Email us to be on the show

Before our kids were diagnosed with CDKL5 Deficiency Disorder, they were diagnosed with epilepsy. In this latest podcast episode, we share our initial experiences receiving an epilepsy diagnosis for our infants. We also share our thoughts on building a collaborative provider relationship that works.SHOW NOTES Follow us @CDKL5inColor on Instagram, Facebook, LinkedIn, Blue Sky, & YouTube! Check out our website www.CDKL5inColor.com Email us to be on the show! CDKL5inColor@gmail.com MENTIONED IN

In Episode 3, you’ll hear from CDKL5 mama, Rachel, who is raising her amazing nine-year-old daughter, Mimi, with her family in California. There are so many quotables in this episode! Rachel is an insightful speaker and her stories about life with Mimi are captivating.Listen in as Rachel reflects on the unexpected path they’ve walked with CDKL5, the challenges they face balancing Mimi’s physical abilities with her significant functional disabilities, the safety measures taken to protect her, and