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

Podcast Show Notes

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

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  • 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.

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