In an original essay, Hope Riley talks about an unexpected diagnosis that changed her son's life.
A week later, in the morning, when I was getting ready to take Logan to therapy, he was in a baby rocker chair. Suddenly, he began doing the same crunching movement, but this time repetitively, and it continued for twenty minutes. That's when I knew that Logan needed to be seen by a doctor urgently. So, I rushed to take him to the emergency department.
After his diagnosis, Logan immediately began taking a high dose steroid, which is a frontline medication for infantile spasms. This was very important because infantile spasms typically lead to developmental regression and with him already having a brain injury, he was at risk of having developmental problems.
During that time, I remember feeling constantly scared. Logan began having many seizures a day, which filled me with anxiety. I desperately wanted somebody to help him.I was constantly in and out of the emergency department at a children's hospital that was ten minutes from our house in Georgia. But after seeing that Logan wasn't getting the help I felt he needed, I ended up switching hospitals to another that was three hours away.
For example, Logan had very good head control and he used his arms and hands functionally. Immediately after his relapse of infantile spasms, he stopped using his hands and arms completely. Since then, he has managed to gain control of his left arm, but his hands are fisted a lot.
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