Feb 13, 2020
Episode 22: Managing Multiple Medical Conditions in Children With Guest Rob Gorski
In this episode, we discuss coping with managing your child's
multiple medical conditions. Our guest, Rob Gorski, has 3 sons on
the autism spectrum. Although they each have autism, their symptoms
are all very different, and two sons have other medical conditions
as well. One son holds only a diagnosis of autism. One son has a
rare fever disorder. His oldest son, Gavin, has Childhood
Disintegrative Disorder, epilepsy, an autonomic disorder, Common
Variable Immunodeficiency (CVID), asthma, and schizophrenia. His
oldest son's disorders have led to multiple hospitalizations to
assist with management of the conditions, lasting up to 10 days
each.
It is exhausting to manage multiple conditions. Luckily, his oldest
son rarely gets sick, due to IVIG infusions. However, when he gets
sick, this may lead to a hospital stay. His youngest sons get sick
frequently, and were recently sick for 3-4 weeks with various
conditions and multiple people in his home were sick at the same
time. In order to fight off infections, Rob's son requires IVIG
infusions twice weekly to stay healthy. Other than 1-2 weekly
psychotherapy sessions, there are medication checks and other
medical appointments, adding to up to 13-14 medical appointments
per week. There is usually at least one appointment every day.
Luckily, there haven't been many recent ER visits for any of his
children, although there were a lot of visits when Gavin was
younger, due to self-injurious behavior. Medication changes need to
be managed for Gavin very carefully, or they can lead to ER visits
due to adverse reactions to the medications. Gavin needs regular
bloodwork (every 1-4 weeks). If there is a problem, the routine
starts all over again. Although his son's condition is relatively
well-managed currently, they are working on finding ways to improve
his quality of life.
It can be very difficult to parent children with multiple conditions, because their needs are all conflicting and the needs may be upsetting to the other children. Each child copes with difficulties differently. Although there are lots of aspects to managing his medical conditions, Gavin never complains about his medical management. Rob finds that he feels that he feels he copes poorly, but others tell him he appears to be coping well. Therefore, other people don't help as much as he needs, because they think he is doing well. Writing and doing his podcast helps him to cope. Walking really helps him to cope, and he usually listens to a podcast, the news, or an audiobook. Respite care has not worked for him, as he feels less anxious when his children around him and in his care. A strong social support network has been very helpful and important to him and his family. The exhaustion has been very difficult for Rob, especially now being a single parent. In order to cope, he tries to find humor in everything, he laughs, he smiles, he jokes around. He noted that self-care is imperative, because caregiver burnout is a huge issue.
Links:
Autism Dad Website
Autism Dad
Podcast
Twitter
Email us if you have any
questions or ideas!
We are now on
instagram!
Check out updates on our
website.
Follow FUBAR on
Twitter
Check us out on
Facebook and join our parent group!
Please subscribe to our podcast in the iTunes store, or wherever
you find your podcasts, Leave us a 5 star review, to help us know
what you like and what you don't like, and to make sure other
like-minded people find support through this podcast.
Show Music:
Lion Roar: Lion Roar by Iwan Gabovitch under CC-BY 3.0 License
(www.freesound.org)
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 2020 Jessica and Lewis Temple