West Covina mom, Georgina, has a 9-year-old daughter, Sofia, who at age 13 months was diagnosed with a rare seizure disorder called infantile spasms. The neurological condition affects approximately one out of 2,500 infants and children in the US each year and can cause significant intellectual and developmental complications. If left untreated, infantile spasms can lead to significant developmental delays, intellectual disabilities, and regression of previously acquired milestones. Furthermore, it can be severe and life threatening if not managed.
The ongoing ordeal that Georgina and her daughter are coping with illustrates a number of important points when dealing with a child who suffers from a condition, which at present presents a treatment dilemma. Most importantly, a parent must serve as a strong advocate for the affected child and take an active role in attaining the best possible treatment. Also, when the condition is intermittent (e.g., seizures), it is important to document them so that medical professionals who care for the child can gain a complete understanding of the problem. In this case, Georgina videotaped Sofia’s seizures, which was immensely helpful to her daughter’s physicians. When a problem persists, despite high-level care, avoid the pitfalls of doctor or hospital shopping in an often futile effort to resolve the problem. For the past two years, Sofia has been receiving her care via UCLA Health System, which ranks among the top medical centers in the US and around the globe.
Georgina first noticed the seizures when Sofia was 13 months old. She salivated profusely, uttered strange noises, dropped her head, and made repetitive movements with fixed eyes. The seizures lasted about 10 minutes and recurred once a week. Georgina videotaped one of the events and took her to an emergency room. The video tapes were extremely helpful for making the diagnosis of infantile spasms. Sofia was placed on medication and was seizure-free for five years. Sadly, the seizures recurred, and for the past two years, she has been cared for at UCLA Health System. Sofia’s physicians are now closely observing Sofia so that they can get an accurate EEG recording of a seizure. When that is accomplished, they will devise a treatment plan, which may involve surgery.
In summary, an ill patient at any age, from infancy to old age needs an advocate to assist in navigating through the medical system. For an intermittent condition, such as a seizure disorder, documentation with a video clip is extremely important. Seek the best medical care available and avoid doctor shopping. However, if you question a diagnosis or treatment plan, it is prudent to obtain a second opinion. U.S. News & World Report ranks hospitals annually, and also ranks them by specialty. Via its website, you can locate the best hospital in your area—or elsewhere—for a specific type of care (e.g., neurology in Sofia’s case). For more information about infantile spasms and available support resources, click on this link.