Kadance Strong

Here is a little info about Kadance's medical journey so far: Kadance has had medical issues since birth. She is 16 years old. She was born with a low body temperature, and a resolved heart murmur (around 2 weeks old) Around 5 months old is when she started to get sick with various viruses about every other week. She has a history of Asthma, Sinus infections, strep (had tonsils and adenoids removed in 2020), ADHD, Anxiety, depression, dysthymia (was bullied in 2nd grade), Mononucleosis (mono), Functional Abdominal pain, learning disabilities, concussion, premenstrual syndrome, migraines, acid reflux, sleep difficulties, insomnia, and chronic fatigue. She misses a lot of school because she has so many viruses all the time, which makes her struggle in school even more. She has seen around 10 specialists over the years and will be adding more due to this new illness. She has had many trips to the hospital over the years for her various illnesses, she has been poked and prodded so many times that it doesn't even phase her anymore.

This latest illness started on December 5th, 2021. She had 2 back to back viruses. A URI (upper respiratory infection) and Coxsackievirus (a form of hand foot & mouth). On December 21st she had 3 Syncopal episodes (passed out) with loss of consciousness all within a 10-minute time frame. Rushed her to the hospital where they gave her fluids for dehydration and ran a bunch of tests (Cat scan, lab work, etc.) They decided to keep her overnight for observation and run more tests the next day (EEG, EKG). She stayed a total of 3 days in the hospital. They suspected that she may have had a concussion from her falls when she passed out. As well as Vestibular Migraines and had some thoughts that she might have POTS Syndrome (Postural orthostatic tachycardia syndrome) or some other form of Dysautonomia (Autonomic Nervous System Dysfunction) We had a follow-up with Neurology the following week. She was super concerned that there was no improvement on any of the meds they put her on at the hospital so she advised us to go down to Boston Children's Hospital for further evaluation. Boston ran some more tests and an MRI was ordered in which they discovered that Kadance had Labyrinthitis (inflammation of the innermost portion of her ear canal). After a 5 month wait she saw the Balance and Vestibular program down at Boston Children's Hospital where they also diagnosed her with Triple PD (Persistent postural perceptual dizziness). She is seeing Rheumatology this week as there has been some suspicion from her Physical therapist and a few other doctors that she has Hypermobility as well. This poor girl can't catch a break, she just wants to be a normal teenager again and enjoy the last few years she has of school. It's bad enough that her Freshman year was cut short due to the latest medical issues because she was bedbound and unable to walk on her own for several months.

Unfortunately, this illness isn't curable, and she will have flare-ups of it for the rest of her life, she just needs to be taught how to deal with the illness and learn how to control it going forward, that is where the weekly trips to Boston Children's Hospital come into play.

Kadance saw the Rheumatologist about 6 months ago and was also diagnosed with a few more illnesses on top of all of the other ones already listed She has Hypermobile Ehlers-Danlos syndrome, Raynaud's phenomenon, Fibromyalgia (fibro fog), polyarthralgia, Stomatitis (sores in mouth off/on) and a weak immune system. She is trying to stay positive about all of this diagnosis but has days when she just cries because she wants to be a normal teenager again!

Her daily life includes:

-Balance problems

-Noise/light sensitivity

-Shortness of breath

-Chest pain

-Dizziness, lightheadedness, vertigo

-Swings in body and skin temperature

-Ongoing fatigue

-Visual disturbances (blurred vision)

-Difficulty swallowing

-Nausea and vomiting,

-GI problems

-Fast or slow heart rate, heart palpitations

-Brain “fog”/ forgetfulness/can’t focus

-Large swings in heart rate and blood pressure

-Weakness

-Mood swings

-Fainting, loss of consciousness

-Sleeping problems

-Migraines or frequent headaches

-Dehydration

-Frequent urination

-Exercise intolerance