Our sweet Harlow is sick and needs all our prayers, love, and support. Our girl is just 4 years old and battling with a sickness that is confusing everyone, including infectious disease. She has become a pin cushion instead of playing in the yard where she should be. We are reaching out to our friends, family, and community for prayers, love, and support. Anything you help with will be very appreciated. There will be trips back and forth to hospitals in different states, medical bills, and just everyday living. Dustin is a first responder in Nevada, and Kerri is a preschool teacher, and they have a 7-year-old son, Hudson.
Dustin and Kerri’s daughter Harlow started to feel ill on May 23rd. On the 25th, they were pretty concerned because she wouldn’t eat, complained of bad tummy pain, was running a fever, and her urine was brown. So they brought her to the ER where she was diagnosed with a UTI, ear infection, and dehydration. They gave her IV fluids and antibiotics and sent her home with an oral antibiotic. Her symptoms did not improve, and she started to swell in her face and extremities. She had gained 5 pounds in a week while not eating at all. Her urine started turning red, so 5 days later, they returned to the ER. This time they went to a pediatric ER where they ran more tests. They decided she never had a UTI and instead diagnosed her with post-streptococcal glomerulonephritis. She needed to see a pediatric nephrologist the following week. The pediatric nephrologist wanted to run more specific blood tests. Once they received those results, they found that her ANCA levels were 4x the normal amount, and she had ANCA vasculitis. The nephrologist said she needed to go to the hospital that night where she would be admitted for 3-5 days in order to receive IV steroids, and they would also perform a renal biopsy to confirm the diagnosis. The preliminary biopsy results do not show ANCA vasculitis, and the doctors are very confused now because they have never seen someone with such high ANCA levels who did not have ANCA vasculitis. Harlow’s bloodwork is also showing she has low complement component C3 levels, which is very concerning and also doesn’t line up with them not seeing vasculitis. They still haven’t received the full biopsy results, but all of her infectious disease testing is coming back negative, which is further confusing the doctors. Harlow needs to be seen by a rheumatologist and a nephrologist that specializes in vasculitis to truly rule out or confirm ANCA vasculitis or figure out what is causing this. Dustin and Kerri are going to work on getting Harlow care in Utah at Primary Children’s Hospital.
