CDKL5 in Color

In Episode three 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. Please listen to the episode to hear it first-hand. I’ll take a shot at highlighting some of the discussion here. The Early Days and Diagnosis From early on, Rachel noticed that something was different about her new baby, Mimi. She was floppy, lethargic, didn't want to feed, and appeared jaundiced. At just three weeks old, odd movements led to a trip to the ER. Initially dismissed as overanxious parents, an EEG soon revealed that Mimi was experiencing seizures, leading to her being put on her first anti-seizure medication. Like most of us, Rachel wasn’t educated about epilepsy and thought that the new medication would resolve Mimi’s issues. However, when Mimi had another seizure despite being on medication, Rache...

It’s a beautiful thing to have a day filled with peaceful joy, but oftentimes when your child has a diagnosis of CDKL5 Deficiency Disorder, a holiday can feel anything but peaceful or joyful. Unfortunately, sometimes what should be a special day can feel emotionally and/or physically draining. So, what can we do to survive holidays with CDKL5? In our latest podcast episode (episode 2 - Let’s Talk About Holidays), we dive into how we manage these special days in our families. Spoiler - it’s giving ourselves and our children a lot of grace and leaning into what works for our unique life instead of holding on to traditions that don’t serve us. Do you struggle with any of these holiday stressors? - Changes in routine. Often our kids (and our households) thrive on routines. A holiday by nature is special, and it can be a whirlwind that is difficult to handle when you have med times and bedtimes, and are missing the support of a school day. Some advice: try to keep as close to your normal r...