Manage episode 298177132 series 2905833
Episode 99: Raising a Child With Multiple Complex Medical Conditions With Guest Tammy Flynn
In this episode, guest Tammy Flynn discusses raising children with complex medical conditions. Her son Marcus has numerous complex medical conditions, including Ehlers Danlos syndrome, Sherman’s kyphosis, EOE (eosinophilia of the esophagus), a bleeding disorder, encephalopathy upon birth, low tone, poor fine motor skills, differently shaped ear canals, slow motility, reflux( as a child), and cancerous moles on his back.
Other than heavy morning sickness that spanned her pregnancy, her pregnancy was relatively normal. Toward the end, she thought her water broke, but it turned out that she was hemorrhaging. The labor and delivery ended up being pretty normal. Marcus was initially jaundiced and had difficulty with feeding from the beginning. Once he started feeding, he started throwing up a lot. He got an infection early on in life and kept getting infections. Marcus bounced from doctor to doctor, with them trying to figure out what was going on. He kept having ear infections, was failure to thrive, was throwing up all of his feeds, and was very developmentally delayed. Doctors didn’t know what was going on. At his 9 month visit, Tammy brought up her concerns with the pediatrician, and it was recommended that Marcus start PT and OT. At that time, he was functioning at the level of a one month old. Tammy felt like she was in a whirlwind, as her other 2 children had lots of activities going on, and Tammy was running a business as well. When he was 3, Marcus had a nerve and muscle biopsy done, which revealed brain encephalopathy. This started her down the road of obtaining additional services, including feeding therapy and speech therapy. They started seeing a lot of specialists, but still were not getting answers. 10 years later, a doctor re-looked at the nerve and muscle biopsy that had been done when Marcus was 3, and found that it was done wrong, and wasn’t a good enough sample to give them enough answers. Marcus was involved in therapies on a daily basis. Around age 12, Marcus started to look hunched over. He underwent imaging and results showed Sherman’s kyphosis and he was fitted for a back brace. Once he got to 97 degrees hunched over, they started doing genetic testing to see what they should do next. The doctors started looking at possible syndromes to try to figure out what condition Marcus had. When he was 19 years old, Marcus’ spine started collapsing. They needed to decide quickly whether they would operate or not. Therefore, they went on a strict diet, did therapies and exercises every day, and tried to get in him the best shape possible for the best possible outcome for surgery. He underwent the 10 hour surgery and remained in the hospital for weeks afterward. He then did in-home therapies for months.
Tammy found that social support and connection with other medical parents key to helping her son. She found that reaching out to the organization related to the diagnosis was really helpful to get recommendations for treatments and doctors. She also found creating an incredible medical team and firing anyone who isn’t a good fit very helpful for Marcus. Give yourself a moment to allow yourself to feel your emotions. However, try not to bring those feelings to the medical appointments. When Tammy gets a new overwhelming diagnosis, she schedules a follow up appointment to come back and ask all the questions, so she can give herself time to cope emotionally.
For hospital stays and ER visits, have a GO bag packed, with activities, things to do, things that bring you joy, work to do, a toiletries bag, things to help your child feel more comfortable, and things that will make you feel more comfortable.
For children who have multiple conditions, keep a packet with diagnoses, medications, adverse reactions, where they find spot to drop blood off at, lists of specialists and doctors, hospital numbers, and scheduling numbers. Start making your chart early, and add to it. List out how the conditions affect your child, what the treatments are currently, and everything that changes. Update the chart every 6 months to a year. Work on building your case for services, when they are needed.
Keep the medications organized. Listen to podcasts, Find low costs tools. Talk to others who have been through the same things. Use your state organizations when you need information.
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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