By Barbie Porter
This past April Tonya Trusty thought her toddler son, Phoenix, was going to die. His rib cage was pronounced. He refused to eat. He faced continuous health problems related to eczema, which had him on a steady intake of prednisone, antibiotics and immune suppressants.
“In May his BMI was in the fourth percentile and he kept going down,” Tonya said.
The BMI or body mass index is based on mass (weight) and height of a person. A calculation used with the two numbers helps determine if a person is underweight, healthy or overweight.
Phoenix, who is now two years and two months old, is now eating well, walking, talking and becoming a mischievous child.
“He’s active and happy. You’d never know six months ago I didn’t think he’d be here today.”Tonya Trusty on her son’s health
Itchy skin is
where it all began
Phoenix’s health problems showed up when he was a few weeks old. He scratched at his face to the point he bled. Trusty took him to the doctor, where the learned he had eczema. Eczema leaves a red, itchy inflammation on the skin.
Phoenix was prescribed topical steroids, but the constant exploration of little fingers touching open sores before they healed led to an infection.
Steroids and antibodies were given, as were immune suppressants, as he was also diagnosed with cradle cap at two weeks. Cradle cap is a common ailment for children. It may clear up on its own or require medicated shampoo.
Time passed and no progress could be seen. So, Trusty brought her son to a dermatologist.
“It was March of 2020 and it was the same week the pandemic hit and shut everything down,” she said. “By then we were on the fourth round of immune suppressants and the fourth round of prednisone and topical steroids. He kept getting infections, so I think we were on the fourth round of antibiotics, too.”
In addition to issues with his eczema, Trusty saw her son’s progression in growth and weight fall below the normal range. Phoenix was connected with a physical therapist, and the activities and exercises prescribed seemed to help encourage crawling and other toddler activity. However, at the 12 month check up he was under 10 percent body weight. The unexplained decrease continued.
At the 18-month check up, Phoenix was down to a 5 percent body weight. His rib cage could be seen and his mother said he appeared to be anorexic. To provide a clear visual of the dire situation, Trusty said at his six-month check-up he was 20 pounds and one ounce. At the 18-month check-up, her 2-foot-71/4 inch tall son had no weight gain, and his growth had notably slowed.
Phoenix wouldn’t eat a normal amount during meal time. Trusty knew what normal was as her older son Landon (who is now three) had an average diet. Phoenix was not only a picky eater but after a few bites he would appear to suck the flavor out of the food and then spit the remains out.
That led to a consideration of food allergies and a visit with a dietician and nutritionist. What they found was Phoenix had allergies to cats and dogs. The cat in the Trusty household was re-homed and the dogs were given outdoor living quarters, but Phoenix’s peculiar eating habits did not change.
In the end, Trusty was told to increase the sugars and calories in his diet. Another month passed, and the symptoms worsened. Now, he was having stomach issues where what he ate passed through him quickly. In turn, he lost more weight.
At that point she told her primary physician she wanted a referral to Mayo Clinic. She was told if she went that route, it would mean all-encompassing tests would be given. When Trusty agreed, that is exactly what the doctors there did.
She learned while certain foods can exacerbate Phoenix’s eczema, they should still be fed to him in small doses. If they are cut from the diet completely there is a chance he could develop a food allergy to that product as he gets older.
She learned what a full-blood panel meant. In addition to testing for many ailments, Trusty said the through panel literally took tubes of blood from her son to the point he had to wait a couple days before any more blood could be drawn.
She also learned how lucky she is to have friends she could count on back in Frazee. She credited Tammy Rausch and Lauren and Tony Brune for stepping in to help care for her other son, who had to stay home as access was limited at Mayo due to COVID-19.
“No words can explain how much it meant to have friend step in to help, without hesitation,” she said. “I never had to worry about Landon being safe while I was gone. That was huge.”
With full focus on Phoenix, Trusty noticed the doctors in their various specialities gathered and created a potential list of causes for the continued health decline. Then, as tests were taken, the teamwork continued so all were informed of the results. She noted that was one aspect she felt was lacking when she started her journey on a local level.
With hours of research and testing, it was determined that little Phoenix had a lot of antibodies for a lot of different viruses and bacteria. She suspects he was riddled with health problems because he was put on immune suppressants early on.
The answer they had been searching for came while she was reviewing the steps that led them to Mayo with one of the doctors. When cradle cap came up, the doctor turned off the light, took out a black light and waved it over her son.
“His whole head and body showed lime green,” Trusty said, noting she was told he had a fungal infection, not cradle cap.
After treatment for the infection started in April, his eczema cleared up. He started gaining weight. At his lowest point he was at a BMI of 3.4. Now he is nearing the eighth percentile.
“I really didn’t think I was going to have him with me by his second birthday,” she said, the fear still cracking her voice. “Hadn’t it been for Mayo, I just don’t know. He’s thriving today; they saved his life, I think.”
She added the decision to press forward and reach out to Mayo was the best choice she made, and encouraged other parents not to hesitate when advocating for their child’s health and wellbeing.