SPENCER'S STORY

Spencer Robinson was a normal 3-year-old, enjoying life and spending his days playing with toys and with his older brother, Drake. One day, Spencer's mother, Angelika, was stunned when an otherwise healthy Spencer experienced what looked like a seizure. A pediatric and adolescent psychologist, Angelika wasn't initially that concerned. She knew plenty of kids who experienced seizures and was sure this was a single episode. Still, she took Spencer to see a specialist at Children's Hospital of Orange County (CHOC). There, she experienced the shock of her life - a moment she says will forever be ingrained in her memory.

Angelika recalls, "The doctor told me my son had a severely abnormal EEG and that by all medical standards he should not be functioning at all. He said my family had a long, hard road ahead and he could not be sure what the future had in store for Spencer."

Shortly after, Spencer began experiencing hundreds of seizures, and then thousands, rendering him helpless. He was extremely ill for close to two years.

While other facilities appeared to have given up on Spencer, CHOC physicians assured Angelika that they would never give up on her son. Spencer was not a candidate for surgery and was not responding to any treatment plans, until the physicians suspected the underlying cause of the seizures was immune-based. Accordingly, they prescribed prednisone and Spencer responded positively to the steroid. The frequency of his seizures lessened, giving Angelika and the physicians hope that they were on to something.

During this time, Angelika began researching the use of IVIG (intra venous immune globulin) therapy, proven effective in treating immune system disorders, and with her physician's support, urged her insurance company to cover the treatment. Despite her research and the testimony of the physician, her insurance company denied her request for coverage. Angelika appealed multiple times, taking her appeal to the tertiary level. She was told that the treatment, while standard for other conditions with seizures, was considered experimental on her son. When all of her efforts to work with the insurance carrier failed, she contacted the California Department of Insurance. From there, an appeal went out and came back unanimous - Spencer was finally going to receive IVIG therapy.

Within weeks of the therapy, overseen by CHOC physician Diane Nugent, Spencer returned to his old self. He turns 6 years old this year and has been seizure-free for nine months! A CHOC nurse continues to give Spencer his IVIG treatments at his home so he doesn't have to be hospitalized. Spencer has regained the functions he lost while experiencing his seizures. Angelika calls Spencer "my hero" and is still amazed that the only time he complained during those dreadful two years was to occasionally say that he didn't like it when he fell down. He is back to enjoying life like a little boy should, including playing with his brother, Drake, now 8, who says that during that difficult time, "I felt like I had lost my brother." Drake now invites Spencer to sleep on his bottom bunk on a regular basis.

Additionally, the California Department of Insurance has earmarked Spencer's case, as has his insurance carrier, so no other family has to endure what the Robinsons did.

Angelika encourages parents to be the strongest advocate for their children and to never give up on protecting their best interests. She is thankful to CHOC and to the partnership she has formed with Dr. Nugent. Their partnership is a shining example of family-centered care - something Dr. Nugent is proud to be a part of.

"A patient like Spencer and a mother like Angelika only come along once in a physician's career," says Dr. Nugent. "The partnership I have formed with those two, with all of us focused on Spencer's care, is like no other. Together, we found the right treatment for a very special little boy."