Bandage Changes can be Very Difficult!

This weekend I was contacted by DebRA of America who referred me to an EB familly having trouble with bandage changes for their child. The family's concern was that she was not holding still and "cooperating" during the bandaging process. The main reasons for most EB children resisiting these dressing changes is because of the pain involved. Many times the bandaging, although a special kind, can adhere to the skin. It can be very painful trying to get it off. Many times parents will soak the bandages off in the bathtub. I offered the family some advice, but also let them know that each EB child is different in their pain level and "willingness" to sit still during these dressing changes that can sometimes take up to 2 hours depending on the severity of EB. When Maxx was younger, we would try to get him involved in the process of bandaging. He would hold the gauze or the Aquaphor, and I think this made him feel like he was part of the process. The trickiest thing is lancing a blister when it has become full and swollen. I hated when we would have to hold him down just to get this done, but if we didn't it would double in size in the matter of an hour. It was nice to be able to communicate with this family about the trials and tribulations of EB. It helps families feel as though they are not alone. I am also sending out a new baby box of supplies to them since they have not received one yet.

To understand what it is like for a child with severe epidermolysis bullosa to get a dressing change, please click the link below: These pictures were captured by Shannon Montez, a photographer in California.

www.shannonmontez.com/bandage/