caregiving for a child with a rare epilepsy syndrome

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coping with CCM diagnosis

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living with a rare epilepsy syndrome

Elliot was a full-term, healthy infant, born without any complications. Elliot’s first tonic-clonic seizure was at 6 months of age accompanied by a slight fever, and lasted 1 hour and 40 minutes. After all testing came back negative, we were told Elliot had a febrile seizure, and we were sent home. All his seizure events required emergency intervention and averaged 20-40 minutes in length. After one of his early seizures, he suffered Todd’s paralysis (a temporary paralysis), which the ER doctor on duty had never seen before. Elliott was transported to Children’s Memorial Hospital in Chicago, with fear that he had experienced a stroke. We were assigned to a neurologist who specialized in cortical dysplasia helped us explore options for surgery.

After more test, we were told Elliot’s residual swelling of the brain was caused by one of his many prolonged seizures. Elliot continued to have prolonged tonic-clonic seizures, and at 18 months, he began having dozens, then hundred, of myoclonic seizures every day.

Although Elliot continues to have the same seizure triggers, we will take the “risk” of him having seizures as they are now, compared to the terror of having a seizure in his sleep.

Now, as a young adult, Elliot has significant developmental delays, behavioral challenges, and difficulties with gait. Even with all of the challenges that come with living with Dravet syndrome, most days he is happy and loving. We will continue to fight to find options to improve his quality of life, and hope one day for a cure for all who live with Dravet syndrome.