Tyler Thomas, now 7, has suffered tremendously from valley fever.
Just months after my son Tyler Thomas was born, we noticed a knot on the right side of his head that felt like hard bone. The doctor kept saying it was a calcium deposit. But when he started having night sweats and had frequent colds, we had a feeling something more was wrong. He also developed what looked like boils on his pelvic area and leg. I took him to a different doctor.
When he was about a year old, his eye swelled up as if someone had hit him or he had fallen. The doctors sent us to UCLA where they did a biopsy. They realized he had disseminated valley fever. The valley fever had spread to his skull, and he had what’s called cranial osteomyelitis. From that point on, we never even spent a full month at home.
Tyler received the anti-fungal medication amphotericin B. It was so harsh when they first gave it to him that he had a seizure and a fever. It was terrifying. I didn’t know what was going on with my son.
Back at home, I had to administer IV medications without nursing skills. Once, when I was administering the medication, the Amphotericin was too strong, and it looked like he was paralyzed from the neck down. He kept crying. I rushed him to a local hospital where I was told he had to be immediately transferred to UCLA. There, they realized the amphotericin had stripped him of his body’s nutrients.
Amphotericin also blows patients’ veins. With so many different IVs, his little hands and legs were all swollen. It came to the point where I picked up my son and looked at him. He was so swollen and torn up. I thought, “They don’t have a cure. Was it worth him going through the pain and misery?” You could see it in his eyes. I was so upset once that the nurses hid him from me when they had to put in another IV. I didn’t want them to poke him anymore. But every day counts. They can’t give you a break.
Tyler went through this for a year and a half. They finally got the valley fever to a level where it could be suppressed. But it never goes away.
When Tyler was young, he never spoke, even when he was 2.5-or 3-years old. Finally, when he did speak, we couldn’t understand a word he said. Some of the doctors believe that when the valley fever went into his head, it could have damaged the speech part. But we don’t know. I had to take it upon myself to buy a sign language dictionary and teach him the words for water, hungry, etc. Now, at 7, his speech is still impaired. He doesn’t have any friends at school. He’d rather stay home.
There needs to be more resources and awareness of resources. The schools need to be more aware. They don’t understand. Valley fever affects your entire family. When a parent has to be outside at the hospital, who is going to take care of the other children? Truancy became a problem with my daughter. We were gone for the holidays, Christmas at the hospitals. I had to call friends to take my other kids presents.
The biggest problem was the lack of awareness about valley fever. There wasn’t any support that I knew of as far as resources, transportation or meals. People think of this as an adult disease or even a child disease, but no one thinks of the babies. You think it couldn’t happen to you. But if you have family members bearing children, they’re all at risk. We need a vaccine.