This week I received a call from a neurologist’s office in North Carolina seeking information on IVIG ( intravenous immunoglobulin). The neurologist office’s needed documentation to provide to an insurance company to gain coverage for a patient. The doctor had discussions with the insurance company in a peer-to-peer review, but the company had declined to cover the treatment.
IVIG is a class of treatment referred to as immunomodulatory, that is it alters the immune system and is administered to treat auto-immune diseases. It is a blood product that suppresses harmful inflammation. Its use in rasmussen’s came out of research conducted in the 90s (Is RE an Autoimmune Disorder Andrews and McNamara) that articulated that RE was an auto-immune disease. Unfortunately this research proved not to be conclusive and the debate continues to today whether there is a viral trigger to the auto-immune process that destroys half the brain in rasmussen’s.
During my medical odyssey with Grace, IVIG was suggested as a treatment. My insurance company declined as well saying the treatment was experimental. By this time, it was too late and the dye was cast, a hemispherectomy was our only course of action. Is IVIG is an effective treatment for RE? For the more aggressive presentation of RE typically found in children, IVIG, for some, temporarily slows the disease, but it is not a cure and the treatment is not a long-term solution. Is it useful, however, in the slower progression cases and in situations where the hemispherectomy surgery is not an option?
I contacted my friends at Johns Hopkins and they provided me three papers that address the use of IVIG. The first paper concludes, “immunomodulation can be considered when early surgery is not feasible, in late-onset patients with slower disease progression, and in the few cases of bilateral disease.” Here are the papers:Experience with immunomodulatory treatments in Rasmussen’s encephalitis Guidelines on the use of intravenous immune globulin for neurologic conditions-1 Therapeutic agents in RE Bien et al 2002
The second paper states, “The expert panel agreed that, although the available evidence is quite limited, it does suggest IVIG may be of transient benefit for some patients with Rasmussen’s encephalitis. The expert panel agreed the accepted and appropriate standard of care for this condition is hemispherectomy. In the opinion of the expert panel, it is reasonable to consider IVIG among the options for short-term, temporizing measures in the management of patients with Rasmussen’s encephalitis.”
The most difficult question regarding IVIG is if its effects are transient why consider treatment. This is a dilemma with no correct decision.
We had a family turn us down this week to ship their child’s tissue following their hemisphrectomy. We had limited interaction with the family, but this was disconcerting. Without the tissue we cannot conduct research to find a cure; the availability of tissue drives research. The tissue after surgery is routinely discarded or stored without purpose. We cannot afford to let a hemispherectomy occur without gaining access to the tissue. Please spread the word and help us to accelerate research into rasmussen’s.