There will be some other questions from other students they have to be answered.
If your child will enter nursery or school, first of all , the parent must meet with the class teacher and try to explain and clarify the disease (EB) and how to deal with.
First, how to welcome EB students and involve them in activities.
Educate other students about EB even in different classes.
Educate other students about abilities and limitations and how can other students help.
The bandages protect the skin from friction and prevent blisters. They also cover areas that have erosions to reduce the risk of infection and reduce pain. However, these bulky bandages are uncomfortable and seal in body heat so that a child with EB gets overheated easily, specially in warm weather.
Parents may be asked to provide an “EB KIT” of dressings , with an explanation of procedure, just in case an injury occurs at school. Parents should also provide telephone numbers of people who can be contacted in an emergency. However, it has been fund that most children with EB cope remarkably well with school life and quickly learn how to avoid injury and trauma.
The objective should be to allow to participate as much as possible. For floor activities , the child can stand, sit, or lie on a foam mat. Blistering is precipitated by friction so exercises involving kneeling , running or jumping may be problematic. Games involving hand holding and fast activity may be also difficult. As a rule , the parents and the child should be allowed to educate the school as to the types of activities that can be performed without the development of blisters. This may include modifying the physical education requirements or excusing the child from all formalized physical education activities.
this varies tremendously from child to another. Usually they know what activities he or she can participate in safely.
Children with EB have varying degrees of pain depending on their sores and blisters at the time. When a student with EB usually walks around the classrooms or in the halls but occasionally prefers not to walk, better ask if they are having pain and honor their wishes.
Students with EB have open and healing wounds of all stages all the time. Since their wounds heal more slowly than wounds in normal skin, they seem to have an odor. This is extremely difficult to prevent. If, however the odor becomes more pronounced, discussing this with a parent will help them treat a wound that may be critically colonized or infected and decrease the odor.
Due to many layers of dressings and some decreases of their dexterity, bathroom time may take more time for the EB student. An EB child may resist going to the bathroom if they are constipated. Allow more time to use the bathroom to relax and be less anxious and less pain.