CDKL5 Guide for Parents
This guide was created for you by a group of fellow parents. When many of our children were diagnosed with CDKL5 Deficiency Disorder approximately, almost no comprehensive information existed. Thankfully, so much more is known about CDKL5 today, in part because of the work of the IFCR community. We hope this guide will serve as a starting point for you and your family as you begin your CDKL5 journey.
Everything You Need to Know About CDKL5 Deficiency Disorder
This guide gives an understanding on:
- What to Expect with CDKL5
- What to Do First
- Your Multidisciplinary Medical Team
- Handling Sleeplessness
- Travel
- And more!