CDKL5 in Color

Episode 48: Let’s Talk Feeding Tips & Tricks

The show notes are packed for this one! Feeding difficulties are a common challenge for those living with CDKL5 Deficiency Disorder. Most individuals are on some type of modified diet due to the inability to effectively move food within the mouth, chew, and safely swallow. In this latest episode, we talk about challenges, tips, and tricks for feeding our children by mouth. We also have an honest conversation about the importance of nutrition and when it’s a good idea to seek out support from your medical or therapy team.

SHOW NOTES

Check out our website and sign up for our quarterly newsletter at www.CDKL5inColor.com

Follow us @CDKL5inColor on Instagram, Facebook, LinkedIn, Blue Sky, & YouTube!

Email us to be on the show! [email protected]

Thank you to our 2026 Airwave Ally Sponsor - UCB Pharma!

LINKS:

Article: Feeding is a Full Body Skill

Article: Development of Oral Motor Skills

Article: 9 CVI adaptations for mealtime

Article: 10 Signs Your Child Might Need Feeding Therapy (And Why It's Not Your Fault)

Fact Sheet: Feeding and Swallowing (Boston Children’s Hospital)

Article: What is a Swallow Study?

Article: What is Aspiration?

Article: What is a nasogastric feeding tube (NG tube)?

Honeybear Straw Training Cup

ARK Therapeutic: Chewies, Z-Vibe, & More

Shop: Ninja Chopper

Shop: Meat Smasher

Shop: Milk Frother

Shop: Straw Cup - The First Years Take & Toss Straw Cups

Shop: Magic Bullet Personal Blender

Episode 33: Let’s Talk About Tube Feeding

Publication: Nutrition Support for Neurologically Impaired Children: A Clinical Report of the North American Society for Pediatric Gastroenterology, Hepatology, and Nutrition

Publication: The Role of Nutrition in Neurological Disorders

Global Expert Insights: Consensus Recommendations for the Assessment and Management of Individuals With CDKL5 Deficiency Disorder

Episode 47: Olivia’s Life with Emryn (age 3)

Life with CDKL5 is a family affair and Olivia knows that better than most! In this latest episode of the podcast, Olivia shares about life with her large family, including her sweet, snuggly three-year-old, Emryn, who lives with CDD. We talk about the challenges of navigating medical care when knowledgeable providers are far from home, and how frustrating it is to access services within systems that aren’t designed to truly educate families on what’s available. We also dive into the emotions of caregiving and hear Olivia’s perspective on releasing what she cannot control. Thanks for joining us, Olivia!

SHOW NOTES

Check out our website and sign up for our quarterly newsletter at www.CDKL5inColor.com

Follow us @CDKL5inColor on Instagram, Facebook, LinkedIn, Blue Sky, & YouTube!

Email us to be on the show! [email protected]

Thank you to our 2026 Airwave Ally Sponsor - UCB Pharma!

LINKS:

Article: What is Cortical Visual Impairment?

Epilepsy Foundation: Seizure Rescue Therapies

Seizure Action Planning

Soticlestat

Managing Caregiver Anxiety: Coping Strategies & Support

Katie Beckett Medicaid Waivers

Parent to Parent USA

Episode 6: Let’s Talk About Constipation

9 Reasons Standing Is Important, Types of Standing Frames “Standers”

Nasogastric (NG) Feeding Tube Insertion and Care

CDKL5 Parent Support Group on Facebook

Vanderbilt CDKL5 Center of Excellence

Episode 46: Let’s Talk About Respite

It’s the number one unmet need that #CDKL5 caregivers have mentioned on our show, and we know exactly why. When your child needs 24/7, specialized care, it’s not easy to do it on your own, and it’s even harder to find someone else who you can trust to meet your child’s needs. Medication management, lifting and positioning, behavior management, seizure safety, specialized feeding needs, and more - it takes a special person to fill the caregiving role for our kids. In this episode, we talk about what respite is (and what it’s not) and how we’ve navigated respite in our own lives. We also offer suggestions to families for finding and funding respite.

SHOW NOTES

Check out our website and sign up for our quarterly newsletter at www.CDKL5inColor.com

Follow us @CDKL5inColor on Instagram, Facebook, LinkedIn, Blue Sky, & YouTube!

Email us to be on the show! [email protected]

Thank you to our 2026 Airwave Ally Sponsor - UCB Pharma!

LINKS:

NORD’s Caregiver Respite Fund

Connect by Support Now - Grant Finder Free Tool

Article: State Medicaid Approaches to Respite Care for Children and Youth with Chronic and Complex Needs

Publication - Pediatric Respite Homes: A Call to Action

Respite Provider Screening Questions

Ryan House in Arizona

Respite Homes in the US

Get To Know My Child - Respite Care Notebook (fillable)

Episode 45: We’re Back for Season Three!

The CDKL5 in Color podcast is back with new episodes! To kick off season three, join us as we catch up about our summer break, reflect about awareness month, and look ahead to what’s to come. We’re excited to continue weaving a tapestry of beautiful #CDKL5 stories! Have a topic you’d like to hear about? Want to be a guest on our show? Message us! We’d love to hear from you!

SHOW NOTES

Check out our website and sign up for our quarterly newsletter at www.CDKL5inColor.com

Follow us @CDKL5inColor on Instagram, Facebook, LinkedIn, Blue Sky, & YouTube!

Email us to be on the show! [email protected]

Thank you to our 2026 Airwave Ally Sponsor - UCB Pharma!

LINKS:

Ppod Chair

Vanderbilt University Next Steps Program

Firefly Splashy BIG

Wheels for the Splashy BIG

DEEP Webinar: Blended Diets 101

Episode 33: Blended Diet (CDKL5 in Color)

Free eBook: Blended Diet Recipes

DEEP Webinar: A Caregiver’s Guide to Seizure Medications (part one)

Register: A Caregiver’s Guide to Seizure Medications (part two)

COMBINEDBrain: Consortium for Outcome Measures and Biomarkers for Neurological Disorders

Haystack Project

ICCRN - International CDKL5 Clinical Research Network

CANDID Study

Episode 44: Exploring Caregiver Guilt (Part 3)

Parent caregivers overwhelmingly want to do their best when caring for their child, but medical complexities, jam-packed appointment schedules, behavioral challenges, and systems that can seem like more of a burden than a support can leave caregivers feeling all sorts of unpleasant feelings about their role. In this special three-part series of the podcast for CDKL5 awareness month, we are exploring a common and harrowing emotion that many caregivers feel - guilt.

We asked our peer CDKL5 caregivers the question, What have you felt guilty about in your role as caregiver? In part three of this series we explore feelings of guilt related to decisions we’ve made. We’d love to hear your comments or feedback. Thanks for listening.

SHOW NOTES

Check out our website and sign up for our quarterly newsletter at www.CDKL5inColor.com

Follow us @CDKL5inColor on Instagram, Facebook, LinkedIn, Blue Sky, & YouTube!

Email us to be on the show! [email protected]

Thank you to our 2026 Airwave Ally Sponsor - UCB Pharma!

LINKS:

Webinar - Addressing Feelings of Guilt and Regret: Strategies to Employ as a Caregiver, Courageous Parents Network

Website - Courageous Parents Network (search guilt)

Article - What is Caregiver Guilt? How to Recognize and Overcome Caregiver Guilt, Psychology Today

Article - The Emotional Side of Caregiving, Family Caregiver Alliance

Article - 7 Actionable Tips to Overcome Caregiver Guilt, Blue Moon Senior Counseling

Book - How to Handle More Than You Can Handle, Amanda Griffith-Atkins

Self-Paced Program - Caregiver Connect (helping families manage the caregiver burden and stress that accompanies caring for a child with a rare epilepsy)

Episode 43: Exploring Caregiver Guilt (Part 2)

Parent caregivers overwhelmingly want to do their best when caring for their child, but medical complexities, jam-packed appointment schedules, behavioral challenges, and systems that can seem like more of a burden than a support can leave caregivers feeling all sorts of unpleasant feelings about their role. In this special three-part series of the podcast for CDKL5 awareness month, we are exploring a common and harrowing emotion that many caregivers feel - guilt.

We asked our peer CDKL5 caregivers the question, What have you felt guilty about in your role as caregiver? In part two of this series we explore feelings of guilt related to the negative feelings we sometimes have. We’d love to hear your comments or feedback. Thanks for listening.

SHOW NOTES

Check out our website and sign up for our quarterly newsletter at www.CDKL5inColor.com

Follow us @CDKL5inColor on Instagram, Facebook, LinkedIn, Blue Sky, & YouTube!

Email us to be on the show! [email protected]

Thank you to our 2026 Airwave Ally Sponsor - UCB Pharma!

LINKS:

Webinar - Addressing Feelings of Guilt and Regret: Strategies to Employ as a Caregiver, Courageous Parents Network

Website - Courageous Parents Network (search guilt)

Article - What is Caregiver Guilt? How to Recognize and Overcome Caregiver Guilt, Psychology Today

Article - The Emotional Side of Caregiving, Family Caregiver Alliance

Article - 7 Actionable Tips to Overcome Caregiver Guilt, Blue Moon Senior Counseling

Book - How to Handle More Than You Can Handle, Amanda Griffith-Atkins

Self-Paced Program - Caregiver Connect (helping families manage the caregiver burden and stress that accompanies caring for a child with a rare epilepsy)

Episode 42: Exploring Caregiver Guilt (Part 1)

Parent caregivers overwhelmingly want to do their best when caring for their child, but medical complexities, jam-packed appointment schedules, behavioral challenges, and systems that can seem like more of a burden than a support can leave caregivers feeling all sorts of unpleasant feelings about their role. In this special three-part series of the podcast for CDKL5 awareness month, we are exploring a common and harrowing emotion that many caregivers feel - guilt.

We asked our peer CDKL5 caregivers the question, What have you felt guilty about in your role as caregiver? In part one of this series we explore feelings of guilt related to feeling like we are not doing enough. We’d love to hear your comments or feedback. Thanks for listening.

SHOW NOTES

Check out our website and sign up for our quarterly newsletter at www.CDKL5inColor.com

Follow us @CDKL5inColor on Instagram, Facebook, LinkedIn, Blue Sky, & YouTube!

Email us to be on the show! [email protected]

Thank you to our 2026 Airwave Ally Sponsor - UCB Pharma!

LINKS:

Webinar - Addressing Feelings of Guilt and Regret: Strategies to Employ as a Caregiver, Courageous Parents Network

Website - Courageous Parents Network (search guilt)

Article - What is Caregiver Guilt? How to Recognize and Overcome Caregiver Guilt, Psychology Today

Article - The Emotional Side of Caregiving, Family Caregiver Alliance

Article - 7 Actionable Tips to Overcome Caregiver Guilt, Blue Moon Senior Counseling

Book - How to Handle More Than You Can Handle, Amanda Griffith-Atkins

Self-Paced Program - Caregiver Connect (helping families manage the caregiver burden and stress that accompanies caring for a child with a rare epilepsy)

Episode 41: Michal’s Life with Natalia (age 5)

There are families navigating a CDKL5 Deficiency Disorder diagnosis all over the world. What makes the diagnosis a little easier? Finding support within your own country if you’re lucky enough to have it. In this latest episode, we welcome CDKL5 Dad, Michal, who is doing big things with his fellow CDKL5 families in Poland. He’s also Chair of the Leadership Board of the CDKL5 Alliance. His reason for getting involved is his beautiful daughter, Natalia, who lives with CDD. Michal shares how Natalia’s impacted by CDD, the close relationship she has with her adoring big brother, Jan, and how Natalia is charting her own course, working hard, and starting her journey in kindergarten. He’s a proud Dad, and we’re sure you’ll enjoy our chat. Thanks for joining us, Michal!

SHOW NOTES

Check out our website and sign up for our quarterly newsletter at www.CDKL5inColor.com

Follow us @CDKL5inColor on Instagram, Facebook, LinkedIn, Blue Sky, & YouTube!

Email us to be on the show! [email protected]

Thank you to our 2026 Airwave Ally Sponsor - UCB Pharma!

LINKS:

Follow Natalia’s Story on Instagram

Follow CDKL5 Poland on Instagram

CDKL5 Alliance

5 Ways Therapy Dogs Can Help Kids

Guide: Supporting Siblings Through a Serious Medical Condition: What to Say Infographic

8 Tips to Communicate Effectively and Compassionately to Help Siblings Cope

Supporting Siblings of Children with Medical Conditions

Episode 40: Let's Talk About Moments of Joy

Life with CDKL5 is filled with uncertainty, difficult decision-making, and sometimes heartbreak, but there are also moments of joy, so let’s talk about them. Taking time to recognize the moments in life that spark joy for us as parent caregivers can be a boost for our mental health. In fact, actively engaging in “micro-acts” of joy has been shown to lead to greater well-being, better coping, less stress, and more satisfaction with relationships.

This episode comes out over Mother’s Day weekend. We know it can be an emotional holiday, so if you’re feeling unpleasant at all, please know that we are sending love your way.

SHOW NOTES

Check out our website and sign up for our quarterly newsletter at www.CDKL5inColor.com

Follow us @CDKL5inColor on Instagram, Facebook, LinkedIn, Blue Sky, & YouTube!

Email us to be on the show! [email protected]

Thank you to our 2026 Airwave Ally Sponsor - UCB Pharma!

LINKS: 

Article: Can little actions bring big joy? Researchers find 'micro-acts' can boost well-being

The BIG JOY Project: Try your first micro-act of JOY now!

Article: The Power of Positive: Reframing a Negative Outlook

988 Crisis Line

Episode 39: Let’s Just Chat!

Sometimes it’s good just to chat. In this latest episode, we talk about what’s been on our minds of late. We talk about the ongoing challenges we face with home nursing and respite, how the upcoming federal budget for 2027 may impact our families and what we can do to advocate, and we talk MEGA COLON - it’s a variety! Have a listen!

SHOW NOTES

Check out our website and sign up for our quarterly newsletter at www.CDKL5inColor.com

Follow us @CDKL5inColor on Instagram, Facebook, LinkedIn, Blue Sky, & YouTube!

Email us to be on the show! [email protected]

Thank you to our 2026 Airwave Ally Sponsor - UCB Pharma!

LINKS:

Colorado Consumer-Directed Attendant Support Services (CDASS)

Council of Parent Attorneys and Advocates

IDEA - Individuals with Disabilities Education Act

The Arc: Education Policy and Advocacy

Find Your Representatives in Congress

Waivers: HCBS Home & Community-Based Services 1915(c)

Kids’ Waivers - state by state list

Cleveland Clinic: Peristalsis

Cleveland Clinic: Bisacodyl

DEE-P Webinar: Navigating GI Interventions

Cleveland Clinic: Intussusception