Treatment of EB in Children
While there is no cure for EB, regular bandaging of the skin may prevent blistering minimize damage to the fragile skin of children and promote healing.
Wound treatment can minimize the spread of infections.
Medications can help alleviate pain, prevent and treat infections and promote healing of blistered skin in children with EB.
Specialized diets may help to treat symptoms associated with EB, such as difficulty swallowing.
In rare cases, surgery may help some symptoms of EB.
Often, treating EB is a daily, lifelong process. It is vital that children with EB and their families become experts in their skin care.
Caring for children with EB:
- Antibiotic ointments can help treat wounds.
- Bandages and padding on fragile skin can minimize damage to the skin and prevent the spread of infections.
- Dental care is extremely important for children with EB (the EB team at Phoenix Children’s Hospital can advise your dentist on treating children with EB or refer you to a dentist with experience in patients with EB).
- Gastrostomy tube insertion into the stomach may be needed to deliver nutrients to children with EB who have difficulty swallowing.
- Genetic counseling is useful to help children with EB and their families to cope with the emotional aspects of being diagnosed with an inherited, genetic disorder.
- Nutritious diets and dietary supplements can help children with EB to maintain their health and grow, while a diet of soft foods can help to avoid damage to the mouth and GI tract.
- Physical therapy and occupational therapy can be helpful for children with EB to maintain the full range of motion in their limbs and better perform daily activities of living.
- Surgery is sometimes needed to treat symptoms of EB. This may be for, dilating a narrow esophagus (feeding tube), separating fused fingers or toes, and removing squamous cell carcinoma.
- Wound care is a daily procedure for many children with EB.
Additional information and resources about EB can be found at Debra.org