Diagnosis, Ongoing Care and Follow-up Visits for Children with EB
Whether your baby had skin wounds at birth, or later in life, a specific diagnosis is the first step in helping children with EB.
If EB is suspected, your pediatrician may refer you to Phoenix Children’s Hospital’s EB Clinic.
If you do not need a referral from your physician, you can make an appointment directly with our office.
After an appointment is scheduled, you will receive a packet of forms in the mail. You can also download and complete the forms below. You should fill out the forms as best you can and bring the completed copies with you to the EB Clinic.
What to expect at your first visit
Your first visit will include an extensive office visit with various EB team specialists. They will do a full skin evaluation on your child, talk to you about your child’s medical history, assess overall health and order any necessary tests.
Tests may include:
- Biopsies of the skin
- Blood tests
- Cultures to check for bacterial infections
- Genetic testing
Ongoing care for Children with EB
Depending on the type of EB, and the severity of the condition, children may need daily care to treat wounds and prevent injury and infection.
Daily care may include:
- Removing bandages and cleaning the skin
- Draining blisters
- Applying ointment to the skin
- Bandaging the skin again
Ongoing care may include:
- Dental care
- Eye exams
- Monitoring for anemia, difficulty swallowing, infections, malnutrition and growth, and skin cancer
Depending on the severity of the condition, children with EB may need to see the team at the EB Clinic 1 – 4 times per year.
However, the EB Clinic at Phoenix Children’s Hospital is available whenever children with EB and their families need care, emotional or physical support, guidance on EB resources and financial help.