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Experts at Arkansas Children’s specialize in the diagnosis and management of rare diseases, including Batten disease, also called Neuronal Ceroid Lipofuscinosis (NCL). Batten disease is a rare inherited disorder of the nervous system that typically begins in childhood between the ages of 5 to 10, although it can be diagnosed at younger or older ages.
At Arkansas Children’s, we have a dedicated pediatric neurology team with the expertise to accurately and effectively diagnose patients with Batten disease. Working together with a range of pediatric specialists, we determine the ideal treatment plan for optimal care, including neuro-physical medicine and rehabilitation. Our expertise and compassion help families address the challenges of Batten disease to achieve a better quality of life.
A person can develop Batten disease any time from infancy to adulthood, though early childhood is the most common time for the first symptoms to occur. Symptoms like progressive vision loss and seizures are among the initial difficulties. Other symptoms may include:
Children with Batten disease eventually become wheelchair-bound or are bedridden.
Our providers from specialties such as neurology, ophthalmology, developmental pediatrics and genetics collaborate to review diagnostic test results and arrive at the diagnosis of Batten disease. Tests may include:
Batten’s disease (CLN2) patients benefit from a new medication called Brineura®. This drug can help slow the loss of walking ability in children with Batten disease, which is a very serious inherited nervous system disorder that typically begins in childhood.
While there is no current cure for Batten disease, innovations in research and potential clinical trials are improving the management of this rare disease. Some of our patients with Batten disease are benefitting from a new medication called Brineura® to help slow the loss of walking ability.
Our team of pediatric specialists at Arkansas Children’s use these research innovations to help children of all ages with Batten disease. For example, patients are seen in the neurology clinic for medications to control seizures. Arkansas Children’s ophthalmologists work closely with the team to support the unique vision needs of our young patients. And specialists in developmental pediatrics and neuropsychology help families to structure educational plans for children.
Our Batten Disease Clinic is available by physician referral. If you would like your child to be referred to Arkansas Children's, please have your doctor call 501-364-4000. If your child does not have a primary care physician, please call 501-364-4000 and we will be happy to recommend one in your area.