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Thriving in the Midst of Chaos: Parenting With Special Needs Kids


Aug 12, 2021

Episode 102: Spinal Muscular Atrophy And ADHD With Guest Trudy Citovic 

In this episode, guest Trudy Citovic discusses raising a child with spinal muscular atrophy. Her daughter, Alina, was diagnosed with SMA when she was 5 years old. She never lost any skills but started experiencing weakness and less stamina. She was about to lose skills when she was formally diagnosed. Her nanny initially picked up on the symptoms, as Alina was not developing at the same rate as another child of the same age. Alina couldn’t go up the stairs well and couldn’t run, and this spurred Trudy to take Alina to the doctor. They spent two years searching for a diagnosis, and a lot was ruled out, but they weren’t sure what was going on. Due to well-timed genetic testing at age 5, Alina was quickly diagnosed with SMA and was provided with treatment just as it was coming out. She initially completed the SMA treatment that used a spinal tap, where the medical was injected intrathecally, although it caused her PTSD due to a horrible spinal fluid leak from the first treatment. The doctor who injected it was on vacation, the ER doctors on call were not familiar with her condition, and misdiagnosed her as fine and sent Alina home. The next morning, the head of radiology called them and said Alina needed to immediately come to the hospital for MRIs, and found that she had a horrible spinal fluid leak. The only treatment at the time was for her to lay flat for 3 days. After this treatment for the leak, Alina still had to go back for 4 more spinal tap treatments. To help with the PTSD, Alina underwent psychotherapy, which was helpful.

Once Evrydsi came out, they immediately switched to that, which has been very helpful to Alina. Alina no longer has to undergo invasive treatments and can simply take a pill every day. Alina no longer has to be exposed to trauma or anesthesia, no longer misses school, and no longer has a several hour drive to get treatment.

 

Teachers at school didn’t understand Alina’s condition, which led to Trudy pulling her out of that school. Getting a 504 plan and switching schools was really helpful in minimizing difficulties for Alina. They taught Alina how to advocate for herself, which has been great for Alina. Nowadays, other than living on a house that is all on one floor, there are minimal impacts of SMA on their lives.

 

Initially, coping was really hard for Trudy and her family, especially due to the medical trauma. She and her husband separated for a short-while, and they engaged in a lot of self-reflection. They sought help from a doctor, who diagnosed them with ADHD and anxiety/depression and prescribed supplements and medications that helped with they mental health. Trudy also began to engage in more yoga, teach yoga, and do daily meditation.

 

Website

Facebook

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Evrysdi

Headspace App

Himalayan Institute

How to Talk so Little Kids Will Listen: A Survival Guide to Life with Children Ages 2-7

The Whole-Brain Child Workbook

Attention Deficit Disorder: The Unfocused Mind in Children and Adults

 

 

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Show Music:

Intro Outro: Intro Outro 2 by Mattias Lahoud under CC-BY 3.0 License (www.freesound.org)

Theme Song: 90s rock style by monkeyman535 under CC-BY 3.0 License (www.freesound.org)

Self Care Song: Green and Orange No Water by Duncan Alex under CC-BY 3.0 License (www.freesound.org)

 

Hosted by: Jessica Temple and Lewis Temple

 

Disclaimer: Our show is not designed to provide listeners with specific or personal legal, medical, or professional services or advice. Parents of children with health issues should always consult their health care provider for medical advice, medication, or treatment.

Copyright 2021 Jessica Temple