Home Care for Epidermolysis Bullosa (EB)

Taking care of a child with EB requires careful attention to prevent infection, protect the skin, and support healing. Follow these instructions to provide a safe and clean environment.

Patient instructions:

Storing dressing supplies

  • Keep all dressing supplies in one clean, dry area, such as a shelf in a closet. Do not store on the floor.

  • Use a clean box or bin with a cover to store supplies to protect them from dust.

Laundry care

  • Wash bed linens and clothing that touch draining lesions with laundry detergent and bleach.

  • Use two rinse cycles or run a second wash cycle without detergent to be sure all soap is removed.

  • Choose soft fabrics like cotton for clothing and bedding to reduce irritation.

Bathing your child

  • Place a foam pad in the tub to protect your child’s skin from hard surfaces.

  • Bath your child daily or every other day.

  • Skin may be cleaned with a variety of gentle cleansers such as Dove® soap, Hibiclens®, Vashe® or saline-based solutions.

  • For babies that cannot sit up on their own, sponge baths may be preferred. You may also need to wash and rewrap one limb at a time. This will help to prevent your baby from rubbing one limb against another, causing skin damage.

  • Dressings can be removed before baths or in the bath. Using the bath to remove can be more comfortable if dressings tend to get stuck.

  • If your child is uncomfortable with bathwater due to stinging, you can add 5 teaspoons of salt per gallon of water. Use table salt or pool salt. Pool salt is inexpensive to purchase in bulk.

  • Bleach or vinegar may be added to bathwater to decrease the amount of bacteria on the skin. Bleach and vinegar may be alternated but should never be used together in the same bathwater. Bleach or vinegar are generally not recommended for children under 1 year old. Talk with your healthcare provider if your child is under 1 year old. 

Bleach bath instructions

  • **BLEACH MUST BE DILUTED**

  • Dilute ½ cup bleach in full bathtub of water OR ¼ cup bleach in ½ bathtub of water.

  • Use bleach baths 2-4x/week for 5-15 minutes each.

  • Rinse with water after dilute bleach baths, otherwise itching can worsen.

  • Warnings:

    • Generally, not recommended for children under 1 year.

    • Do not swallow, do not splash in eyes, do not drink!

    • Keep out of reach of children.

    • Keep in labeled child safety proof bottle.

    • Dilute prior to contact with skin.

    • Do not store in beverage containers.

    • Do not mix with acid or ammonia.

    • Know your poison control number.

  • Can also mix 1-2 teaspoons bleach in 1 gallon of water for compresses

Vinegar bath instructions

  • For 5% acetic acid: mix 1 part vinegar to 20 parts bath water

  • For 3% acetic acid: mix 1 part vinegar to 12 parts bath water

Comfort

Your child’s comfort is very important.

  • Create a routine for dressing changes. If possible, avoid bright lights in your child’s face, especially for babies. Singing, using a soothing voice, or playing soft music can help calm them. Dressing changes go more smoothly if you assign roles—one person handles the dressing, and another soothes your child. It's helpful to unwrap and bandage one limb at a time while keeping the others swaddled.

  • Some children may need pain medication before baths or dressing changes. Talk to your doctor if your child is having trouble, so they can recommend the right medication and dose.

  • Itching can be a big source of discomfort. Keeping the room cool and dressing your child in loose clothing can help. Let your doctor know if your child is struggling with itching—there are medicines that can help.

Dressing changes

Dressing changes are usually daily or every other day. If a dressing becomes loose, dirty, or falls off, replace only that part of the dressing until the next day.

Prepare for dressing changes

Prepare dressings ahead of time. Dressings can be cut several days in advance and coated with petrolatum 12 hours in advance, folded to contain petroleum jelly, and stored in a sealed plastic bag.

  1. Choose a clean area.

  2. Disinfect the area with the bleach solution (1 part bleach to 10 parts water).

  3. Cover the area with a clean towel.

  4. Wash your hands with soap and water and remove jewelry (rings, watches, bracelets) to avoid scratching your child.

  5. Gather recommended supplies:

    • Mepilex® Transfer with adhesive side coated moderately with petrolatum

    • Rolled gauze in various sizes – 2", 3”, 4” (recommend Curity™ brand)

    • Tape to secure gauze

    • Tubular dressing (such as Elastinet®, Spandage®, or Tubifast®)

    • Vashe or other wound cleanser

      • Can also mix 1-2 teaspoons bleach in 1 gallon of water for compresses.

      • Can also use diluted vinegar solution for compresses. For 5% acetic acid: mix 1 part vinegar to 20 parts bath water; for 3% acetic acid: mix 1 part vinegar to 12 parts bath water.

      • For any of these options, soak gauze in cleanser solution.

    • Bandage scissors

    • Petroleum jelly (generic brand or Vaseline®)

    • Needle for lancing blisters

    • Gauze

  6. Arrange the supplies:

    • Open the packages of gauze and any sealed containers.

    • Keep the plastic bag nearby for dirty dressings.

    • Arrange the supplies in the order you will use them.

    • Place everything within easy reach.

Steps for dressing changes

  1. Wash your hands with soap and water before removing the old dressings.

  2. Focus on one limb at a time to decrease itch and discomfort.

  3. Soak any stuck dressings in the bath or with water to remove them gently.

  4. Check for signs of infection. Call your healthcare provider if you notice:

    • Redness around a blister or sore

    • Red streaks near lesions

    • Yellow/green/blue drainage, or more drainage than is typical

    • Increased tenderness or bleeding

  5. Intact blisters should be lanced daily or when they are larger than dime sized. Gently wipe blister clean with alcohol pad and allow to dry. Drain blister by holding needle parallel to skin and piercing blister roof. Gently apply pressure with gauze to encourage fluid to drain. Keep the blister roof in place after draining to protect the underlying skin, the blister roof acts as a natural band aid.

  6. Apply wound compress (gauze soaked with Vashe or bleach/vinegar solutions as described above) to open wounds for 1-2 minutes

  7. Only use topical antibiotics as needed/instructed by your doctor. Overuse leads to the development of resistant bacteria.

  8. Place the Mepilex with petroleum jelly on the wound as the first layer. Overlap the edges by about 30% to cover the entire area without gaps.

  9. Then wrap with rolled gauze. Make sure the gauze does not touch skin, as this can lead to friction, blistering, or skin sloughing.

  10. Secure with tubular bandage (Tubifast, Elastinet, Spandage), also ensuring this only touches other bandages, not skin.

  11. Seal and dispose of the trash bag with dirty dressings.

  12. Wash bandage scissors with soap and hot water, rinse and dry thoroughly.  Put away in a clean plastic container or bag for the next use.

  13. Save all unused materials and put them away in the clean storage area for the next dressing change.

Feeding

  • Some babies can use pacifiers, without blistering while others cannot. Pacifiers can be coated with petroleum jelly or coconut oil to minimize blistering.

  • Breastfeeding is an excellent way to provide nutrition for your baby. If using a bottle, choose a special, soft nipple like the Haberman® nipple (available from Medela®). It is helpful for babies with blisters in their mouth.

  • Hold your baby in a half-sitting position during feeding. Burp gently halfway and at the end.

  • Use a soft, plastic-coated spoon when starting solid foods.

Clothing and toys

  • Choose clothing that is lightweight, loose, and breathes well. Some babies need clothing turned inside out so the seams do not cause friction. Others do well wearing 1-2 sizes up.

  • Use soft diapers with the elastic removed or consider using reusable microfiber diapers. The most important thing is the diaper wicks away moisture from the skin, so urine is not sitting against the skin.

  • Choosing the right shoes for your child with EB is important. Look for supportive shoes that their skin can tolerate. Start using them when your child begins walking. Here are some options:

    • PLAE®: These shoes follow the natural shape of your child’s foot and have adjustable tabs to fit comfortably.

    • PediPed®: Made with a soft rubber sole, rounded edges, a stable heel, and a soft toe box to help toes grip the floor.

    • Robeez®: Soft-soled shoes that flex and bend easily to support natural foot movement.

    • Friendly Shoes® or Billy Footwear®: Both brands feature large zippers for easy on-and-off without rubbing or causing friction.

    • Adidas® Climacool®: Athletic shoes designed with good ventilation to keep feet cool.

    • Nike® FlyEase®: Sneakers that zip open around the back and close with Velcro. They look like lace-up shoes but are easier to wear.

    • Pedors®: Stretchy orthopedic shoes that work well for foot issues like swelling or sensitivity.

    • Sheepskin slippers or shoes (for example Uggs®): These are a soft option for days when blisters or pain are worse.

Development

Babies:

  • Hold your baby often. Skin-to-skin contact helps you bond and gives your baby comforting, positive touch.

  • Encourage milestones. Help your baby practice tummy time, rolling over, sitting up, and standing with support. These activities support healthy development.

  • Choose safe and developmentally appropriate toys. Pick toys that match your baby’s age and abilities. If needed, lightly coat the toy with petroleum jelly to prevent rubbing. Let your child explore different textures and sensations safely.

Toddlers:

  • Create a safe space for your child to practice milestones like tummy time, crawling, cruising, walking, jumping, and running.

  • Bandage areas where friction is common but avoid over-wrapping to keep your child’s movement free and natural.

  • Encourage weight-bearing activities to help strengthen bones and improve overall health.

School-aged children:

  • Make stretching part of your daily routine to help prevent joint stiffness. Use distractions like reading, TV, music, or an iPad to make stretching easier if needed.

  • Encourage participation in non-contact sports or activities like yoga, dance, biking, or swimming.

  • Aim for 30 minutes of physical activity each day. Some activities might need to be adjusted, or equipment modified to prevent skin issues. These activities also help with socializing and making friends.

  • Other ways to stay active throughout the day:

  • Walk up and down the stairs a few extra times. Going down the stairs helps build bone strength. Use a handrail for safety!

  • Start a walking routine with 10 minutes a day and slowly increase the time as you feel comfortable. Focus on breathing and posture during your walks! Choose a time of day for walks when the temperature feels best for you.

  • If movement is limited, try sitting and standing from a chair to build strength. Try doing it without using your arms and count how many times you can do it in 30 seconds.

  • Play your favorite music and dance with friends or family.

Safety and medical care

  • Handle your child gently to avoid skin damage. Do not pick the baby up from under the arms. Instead, lift from under their bottom and support their head and back (or chest) with the other hand.

  • Use sheepskin padding or foam if needed to pad hard surfaces like car seat (belts) and strollers. Always follow the manufacturer’s safety instructions. Never add anything to your child’s crib. Learn more about safe sleep for babies.

  • NO rectal temps! Always take your babies temperature under their arm. If needed, lightly coat the thermometer with petroleum jelly or lubricant. Do not apply too much, as it can affect the temperature reading.

  • Sometimes your child may need blood draws, blood pressure checks, or other procedures. If needed, place gauze under the blood pressure cuff to prevent it from touching the skin directly. At CHOP, a team of phlebotomists and nurses is trained to perform blood draws and place IVs for children with fragile skin due to epidermolysis bullosa. When your child gets immunizations or blood draws, ask the nurse/tech to dab their skin very gently with alcohol. Never rub the skin.

If you have questions, concerns or notice signs of infection, call your CHOP dermatology team at 215-590-2169. For after-hours help, call 215-590-1000 and ask for the dermatology resident on call.

Resources

debra of America

  • debra of America is a nonprofit organization offering programs such as free wound care supplies, nurse educator support, advocacy for newly diagnosed families, mentorship, and more. They also distribute educational resources and facilitate support networks for individuals with EB and their families.

  • Phone: 833-DEBRAUS (833-332-7287)

  • Website: www.debra.org

EB Advocate

  • EB Advocate is a program by AdaptHealth Patient Care Solutions that offers specialized wound care products and support services for individuals with Epidermolysis Bullosa (EB). They assist with insurance verification and provide personalized care to meet the unique needs of EB patients

  • Website: EBAdvocate - AdaptHealth

 

Reviewed December 2024 by Julie Wieser, BSN, RN, Julie Anderson, BSN, RN, Colleen Macner Allen, PT, DPT, CLT, Emily A. Smith, BSN, RN, CWOCN