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Because there's no cure for Hunter syndrome, treatment focuses on managing signs, symptoms and complications to provide some relief for your child as the disease progresses.
Although there's no cure for Hunter or other MPS syndromes, some treatments that are in their early stages have had some success by slowing the disease's progress and lessening its severity.
These emerging treatments include:
Enzyme therapy. This treatment uses man-made or genetically engineered enzymes to replace your child's missing or defective enzymes and ease the disease symptoms. Called idursulfase (Elaprase), this treatment is given once a week through an intravenous line. Given early enough, enzyme replacement therapy may delay or prevent some of the symptoms of Hunter syndrome. It's unclear, however, if the improvements seen with this therapy are significant enough to raise quality of life for people with the disease. In addition, benefits in thinking and intelligence haven't been seen with enzyme replacement therapy.
Serious allergic reactions can occur during enzyme replacement therapy. Other possible side effects include headache, fever, skin reactions and high blood pressure. Side effects tend to lessen over time, however.
Treatment for skeletal and connective tissue problems. Because most children with Hunter syndrome don't heal well and often have complications after surgery, options are limited for addressing skeletal and connective tissue complications. For example, surgery to stabilize the spine using internal hardware is difficult when bones are fragile.
Your child's joint flexibility can be improved with physical therapy, which helps address stiffness and maintain function. However, physical therapy can't stop the progressive decline of joint motion. Your child may eventually need to use a wheelchair because of pain and limited stamina.
Surgery can repair hernias, but because of weakness in connective tissues, results usually aren't ideal. The procedure often needs to be repeated. One option is to manage your child's hernias with supportive trusses rather than surgery because of the risks of anesthesia and surgery.
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