Episode 137 | A son with Aicardi-Goutieres Syndrome (AGS)

On today’s episode of the podcast we hear from Lauren about her son’s diagnosis of Aicardi-Goutieres Syndrome (AGS.) She shares how her uneventful pregnancy followed by a NICU stay and numerous hospital visits with unanswered questions eventually resulted in a diagnosis. Lauren shares how coaching changed her life and how she is now a life coach for mothers of children with disabilities.

[4:32] How ranch living was a dream come true

[5:20] After an uneventful pregnancy, Lauren gives birth

[7:00] A nurse tells Lauren to get a second opinion

[9:15] Lauren and Katie chat about the NICU life

[11:00] How staying at the hospital added to the emotional and stressful times

[12:25]  Asking about Lauren’s pregnancy history

[14:00] An MRI reveals some answers

[16:50] Living in flight or fight mode

[19:50] Leo stopped eating and had a swallow study

[21:00] The doctors grasp for answers

[26:30] Genetics appointment results

[27:30] How diagnosis day holds trauma

[29:11] Finding a specialist who has experience working with children who have AGS

[31:20] How Lauren found healing through coaching

[35:28] Lauren shares Leo’s love language

[37:24] Self care is what works for your stress management

[39:22] What is driving your action and feelings?

[42:27] Our definitions of being a good mom

Connect:

Lauen’s Coaching Website

Lauren’s Instagram Page

Whether you are a parent or professional, we want you to join our community. Sign up for our newsletter here.

Parents, download our free parent starter kit.

When you download our starter kit, you’ll learn how to:

• Give medicine to your child without it becoming a wrestling match
• Prepare your child (and yourself) for a shot so they can feel less anxious
• Create and use a coping plan for any medical appointment or procedure

The first sign of sniffles, or worse, shouldn’t send you into a tailspin. Feel confident in your role as a parent and advocate, no matter what medical situation you’re facing.

Child life specialists, get affordable PDUs on-demand here.

Shop for your CLOC gear here.

Catch up with CLOC on Instagram, Facebook and meet Katie for a Q+A every Monday at 10 AM CST.