Toward finding a cure for OMS, we collect data on every child evaluated at the National Pediatric Myoclonus Center. Research on OMS has been hindered by its rarity, so development of a database is essential. The information obtained from your child will be used directly in his or her treatment. It will also be added to the total database. You are benefiting from research on all the children who came before. Through the following studies, we offer state-of-the-art diagnosis and treatment.
Lumbar puncture study
To determine the nature and severity of brain inflammation, we measure lymphocyte subsets in spinal fluid, which bathes the brain. We also determine the levels of several brain chemicals that are associated with the symptoms of OMS.
Although the idea of a spinal tap scares some people, it really is not a major procedure. We use intravenous propofol anesthesia so the child is not awake. The fluid is obtained sterilely through a spinal needle placed at the base of the spine. The amount of spinal fluid removed is replaced by the body in about an hour. Done under these controlled circumstances, there are no major complications of lumbar puncture. An occasional child will experience a sore back or headache, which is relieved with rest and acetaminophen (Tylenol).
Parents of children who already had a spinal tap often ask why another one is necessary. Unfortunately, information we need is not available from tests done at other hospitals.
We also obtain a blood sample for parallel studies under the same anesthesia.
To determine what types of white blood cells have invaded your child's tumor and what chemicals they secrete, we ask permission to obtain a piece of the neuroblastoma.
Longitudinal Follow-up Study
This study examines the course of OMS over time. The aim is to determine how long OMS lasts and to identify patients at risk for relapses. We collect demographic information on all children.
Our center runs several trials of immunological medications. We aim to find the most effective agents with the least side effects.
Immune Response in OMS
The purpose of this study is to determine the immune response to the agents we use to treat OMS. A small amount of blood is tested for several immune markers.
This study evaluates the intellectual and educational consequences of OMS. It provides valuable information for working with the schools to devise a learning plan for your child.
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