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About Jack

"Jack" © Can Stock Photo

Jack is a 17-year-old who has drug-resistant epilepsy and intellectual disability. Jack was diagnosed with infantile spasms (a severe epilepsy in infants) when he was 7 months old. He subsequently developed Lennox-Gastaut syndrome (a severe epilepsy syndrome in older children) and has been on many different anti-epileptic medications as a result. Although he continued to have intermittent seizures, his epilepsy was under fairly good control until he was about 13 years old, when he and his family moved to a rural county where they had relatives, because they could no longer afford to live in the city.

Shortly after the move, he had an episode of status epilepticus, which was thought to be attributable to some missed doses of medication, disrupted sleep, and a viral illness. He was transferred from the local hospital to a tertiary care center three hours away and hospitalized for two weeks. His new epileptologist there was able to get Jack’s seizures under control, although they were not as well controlled as before the move. Because transportation to the tertiary care center was so difficult, Jack missed appointments occasionally over the next few years.

Jack has received services at home and at school since infancy. He is able to complete some of his activities of daily living on his own with prompting, but he largely depends on his mother’s care. Because he will turn 18 in a few months, his mother recently started the process of applying for guardianship.

Last week Jack returned to see his epileptologist at the tertiary care facility's clinic for a routine follow- up visit. The physician informed Jack and his mother that he would be retiring soon and that Jack would need to find a new physician. Although they updated his seizure plan at that visit, because of Jack's age, the retiring physician suggested that they look for a new epileptologist who treats adults and referred them to that clinic at his facility.

After returning home, Jack’s mother called to make an appointment with the adult epilepsy clinic at the tertiary care facility but quickly found out that they did not take Jack’s insurance. His mother applied for new insurance and made a new appointment, but they were unable to keep it because the insurance had not taken effect. By then, Jack was 18 and could no longer be seen in the pediatric clinic, and his pediatric epileptologist had since retired. Jack’s mother found an adult neurologist close to Jack’s home and who had one visit with Jack. However, that neurologist said that Jack would need to find a specialist to care for him. His mother continued to look for an appropriate epileptologist but Jack ran out of medications before she succeeded. During a bout of the flu, he came to his local hospital's emergency department in status epilepticus. A day later, he was transferred to the adult tertiary care center where he was hospitalized for three weeks. As he recovered, his mother noted that he had lost some of his self-care abilities.