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We know how hard it is to care for a child with complex medical needs. We are here to support you and ease these difficulties any way we can. This guide was created as a resource for you and your family to navigate your care and partnership with our team at the Leukodystrophy Center.
Newborn babies and babies born prematurely may show different behaviors when they are irritable, uncomfortable or stressed. Here are the signs to look for.
Toddlers may display different behaviors when they are in pain or uncomfortable. Here are the signs to look for.
School-age children may display different behaviors when they are in pain or uncomfortable. Here are the signs to look for.
Teens may display different behaviors when they are in pain or uncomfortable. Here are the signs to look for.
A doctor may prescribe an opioid pain medicine (also called a narcotic) for your child. Learn more about how opioids work.
These webinar videos from the Leukodystrophy Symposium provide up to date information on the best diagnostic and disease management practices, with an emphasis on how to provide patient and disease centered care during the COVID-19 health emergency.
The International Rett Syndrome Foundation (IRSF) is laser-focused on creating a world without Rett syndrome. For nearly 40 years, we have fueled life-changing advancements in research toward a cure.
The Rett Syndrome Primary Care Guidelines provide suggested visit schedules by clinical area of assessment, specific concerns to look for and timelines for follow up appointments. Download today to ensure the best care for your child.
The ability to think in images or pictures is a skill that comes easily to children and teens, and can also be helpful for pain management.