This week on Seizing Life® Clare Phelps shares the difficult diagnosis and frustrating treatment journey of her young daughter Sophie, whose epilepsy has so far been treatment resistant.
In March 2021 at the age of three, Sophie Phelps experienced her first tonic-clonic seizure, which was diagnosed as a febrile seizure by emergency room staff. Four months later, Sophie experienced another tonic-clonic seizure, which was again labeled a febrile seizure. However, her seizures continued in a rapid onset during the next several weeks. Sophie was admitted and discharged from the hospital numerous times with repeated reassurances to her mother that the seizures were complex febrile seizures. Within the span of a month, Sophie went from a normal, healthy child to experiencing recurring, tonic-clonic seizures that would often dangerously impact her oxygen levels. Clare details the frightening and frustrating early months of her daughter’s epilepsy and her years-long journey through various neurologists and epileptologists getting second, third, and fourth opinions. She discusses the numerous therapies and medications that Sophie has tried to better control her seizures, and how the seizures and medications have impacted Sophie’s physical and cognitive health. Clare also talks about her advocacy efforts as a CURE Epilepsy Champion running in the Chicago Marathon, explains why epilepsy research is important to her, and offers advice for parents of children living with epilepsy and physicians who are treating those with epilepsy.
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