Caring for a child with CLN2 disease is complex and impacts the family in many ways. Managing complex medical needs, such as frequent appointments and various prescriptions can be challenging, even when the family has found a routine that works.
Due to the range of symptoms and complications that children with CLN2 disease experience, experts agree that children should be under the care of a team of specialists. Talk to your doctor about which specialists they think should be included in your healthcare team.1
Your doctor may use medications to manage seizures, one of the most common symptoms of CLN2 disease. There are many anti-epileptic drugs (AEDs) available to help manage seizures. However, some may be more effective than others in the treatment of seizures that are related to CLN2 disease. It is important to work closely with your doctor to find the right AEDs for your child.1
The goal of CLN2 disease seizure management should be to control seizures and minimize disabling or life-threatening seizures. Even with the use of AEDs, seizures will not likely go away completely and may still occur. Your doctor will work to find the medication(s) or dosage that best controls seizure activity with minimal side effects.1
Medication(s) should be reevaluated periodically. It is possible that medication(s) that worked well in the past may no longer work as well for your child. If a new symptom or sudden change occurs in your child’s condition, talk to your doctor. Together, you can decide whether or not the new symptom or change in condition may be a reaction to the seizure medication.1
Three common movement disorders associated with CLN2 disease are2,3:
Experts agree that treatment should focus on reducing how often your child experiences these symptoms, lessening the severity of these symptoms, and relieving any pain children may experience.
Certain medications and physical therapy may be used to help manage movement disorders. Your doctor may even recommend support equipment (an ankle brace) or items designed to adjust body posture (special pillows, a neck support, or a vest). Talk to your doctor about any movement disorder symptoms your child may be experiencing. You can work together to find a treatment that will best address your child’s movement disorder symptoms.
As CLN2 disease progresses, certain feeding and digestive issues may occur, including1:
When caring for a child with CLN2 disease, it is important to keep them in good nutritional status, prevent deficiencies, and make sure they maintain an appropriate growth rate. Achieving these goals may require supplementing their diet with formula, vitamins, and minerals. To prevent constipation, it is important to include an appropriate amount of water and fiber in your child’s diet, and consider medications that may help relieve this symptom.1
As swallowing difficulties increase, managing your child’s secretions will become very important. Your doctor will recommend treatments and help you develop the right plan for your child.1
You and your doctor should discuss your child’s nutritional status and any feeding abilities or restrictions you encounter. Together, you can identify potential issues and the various techniques that may address them, such as special diets and other methods of feeding.
CLN2 disease includes a range of symptoms, some of which may cause pain. The most common causes of pain are1:
As parents or caregivers, you play an important role in pain assessment. Your ability to read your child’s reactions and/or signals can help your doctor find the cause of pain and treat painful symptoms appropriately. Sometimes, finding the cause of pain may take time and careful evaluation of different parts of the body may be required. Once the cause of pain has been identified, your doctor will provide recommendations for addressing pain.1
Experts agree that children with CLN2 disease can benefit from physical therapy that has been adapted for the specific challenges they face. Talk to your doctor about developing a physical therapy plan specialized for CLN2 disease. Physical and occupational therapy should be started early to help your child maintain abilities for as long as possible.
Maintaining regular school attendance is extremely valuable for children with CLN2 disease and their families. Children and their families benefit from the social interaction and the continued involvement in their community.
It may become difficult to communicate with your child as language, motor skills, and vision decline. To help you continue communicating with your child, experts suggest early development (when possible) and use of alternative communication methods like symbols and gestures.
The BDSRA is dedicated to funding research for treatments and cures, and providing family support services.
Visit the Batten Disease Support and Research Association (BDSRA) to learn more about CLN2 disease ›
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