True Story how a determined mother gets IVIg approved
Search Cidpusa webBy Paul Ziobro
WASHINGTON - Patience and persistence paid off for a Weston family, whose child plans to begin potentially life-changing treatments Sunday following a five-month long appeal process with their health care provider.
For more than half her life, eight-year-old Anns health has been deteriorating due to Lyme disease, which has contributed to her current movement disorders and mental decline, her mother, Shelly, said.
"Her memory of herself has always been as someone who's sick," her mother Shelly said. "She doesn't really remember what it's like to be the energetic kid she was and not have these disorders."
When intravenous antibiotics failed, the family fought to persuade their HMO, Health Net, to cover an expensive, experimental treatment recommended by several doctors. The Shelton, Conn.-based company agreed Monday to provide at least a six-month trial phase of the treatment, which the family are "excited about and hoping everything goes smoothly," Shelly said.
Because of the experimental nature of the treatment and rare combination of Anns conditions, Health Net wanted to take extra precautions, including consulting several specialized doctors, before signing off on intravenous immunoglobulin (IVIG) treatment, according to company spokespeople. IVIG is a process that would boost a deficient immune system to help it accept antibiotics better.
"This is the outcome we wanted. Independent physicians working with the Shellys family and coming to a place where everyone was comfortable with the course of treatment and evaluation," Health Net spokeswoman Alice Ferreira said.
Ann probably contracted Lyme disease when a deer tick bit her cheek on her 4th birthday, mother said, but the main visual symptom of the disease-a red, slowly expanding "bull's-eye" rash, according to the Center for Disease Control-never materialized. The disease went undiagnosed for two years as Ann was scuttled to specialists for pains in her knees and feet, an inability to concentrate, insomnia and "awake seizures," where her body would flail for up to an hour, Shelly said.
"The first time it (an awake seizure) happened, my husband and I held her legs down and her toes started to move, and she was haveing a seizure, 'Make this stop! Make this stop!" Shelly said.
Anns Lyme disease had proliferated without proper treatment for so long that it spread to her spinal fluid and brain, contributing to her movement and cognitive disorders, Sharon said. Once she was positively diagnosed with Lyme disease, doctors tried IV antibiotics but that treatment only had a temporary effect.
Anns pediatric neurologist, Dr. Abba Cargan, first recommended IVIG treatment last November. Cargan declined to comment on her condition or treatment, according to his office. This case did not have the "bull's-eye" rash, which is diagnostic.
Initially, Health Net denied coverage for IVIG because they maintained the little girl had no clear diagnosis and Wrachel would be at risk to the treatments' side effects, according to Health Net spokesman Ira Morrison.