EB Tips and Tricks from the Debra CARE Conference

Pictured: Dr. Jakub Tolar

EB can make a lot of daily activities difficult and painful. Check out some tips and tricks compiled from presentations at the 2016 Debra CARE Conference.

Good nutrition can be difficult to maintain for people with EB, in fact, malnutrition is fairly commonplace. Eating can be painful when there are blisters in the mouth and throat. Soft diets are often helpful to ease this difficulty. Food can also be blended to make it easier to be consumed but for many feeding tubes are still necessary to maintain a reasonable caloric intake. People with EB tend to require more calories per day than most people because their bodies are typically in a constant state of healing.

Jennifer M. Phillips, MS, RD, LD, recommends adding high calorie, high protein nutrition-rich food wherever possible. EB patients need not shy away from fatty foods. Avocados, cream, butter, blended nuts are all good options to help increase daily calories. Dr. Phillips also suggests that inflammatory foods may help overall health because it’s difficult for healing to take place when the body is dealing with consistent inflammation. Carnitine, selenium and zinc levels should also probably be checked.

Teeth cleaning after eating may be difficult as well. Try using a very soft bristled toothbrush with an easy handle to grip and communicate well with your or your child’s dentist. Dental instruments can be abrasive enough to make their delicate skin blister, both outside and inside the mouth. In addition to the fragility of skin and mucus membranes, many people with EB have smaller mouths, making dental care even more complicated.

Mark Cannon, DDS, suggests;

Dentists should lubricate their instruments (usually with carafate and costco coconut oil) and gloves so there is as little friction and abrasions as possible and should modify what they’re using for the patient’s comfort.

At home he recommends the use of minimum intervention and periobiotic toothpastes. Toothpastes without fluoride are best when ensuring that all toothpaste will be spit from the mouth may be difficult. He also suggests the use of products with xylitol which isn’t metabolized by bacteria the same way as sugar and can keep the pH in the mouth where it’s supposed to be.

Anna M. Baker, MD gave a presentation on wound care and infection and began by pointing out that our skin isn’t sterile so of course, our wounds aren’t either.

Contrary to what many believe, Dr. Baker states that constant use of topical antibiotic ointment can be detrimental. She recommends using it if there is obvious sign of an infection but not to use it to prevent infection because of the possibility of bacteria becoming resistant to it.

Another common mistake is to assume there is an infection if there is fluid coming from the wound, when that is not always the case. Some fluid loss from a wound is normal so look for a change in the amount, smell, and appearance of the fluid and keep an eye out for inflammation. Bandages wrapped between the fingers can help keep hands functional and keeping all bandages clean and non-restrictive is an important key in the healing the process.

Unfortunately, most patients with EB experience a range of pain on daily basis. Getting dressed in the morning and bandages changes can be exceedingly painful, let alone appointments. Mark Popenhagen, PsyD had some tips to manage pain from a psychological approach. He warns that many young children will be under the impression that pain is punishment and thus be less likely to say are in pain in order to avoid more.

There are different responses to pain and some are better than others. Catastrophizing self-talk lowers self-control and can actually increase pain. Distractions, on the other hand, are helpful. Something as simple as having a child concentrate on blowing on a pinwheel to make it spin while they’re having something painful done can lower their pain levels.

Dr. Popenhagen also recommends monitoring your child’s pain levels without constantly asking if they’re hurting, which can just serve as a constant reminder of their discomfort and cause them to focus on it. He also suggests doing potentially painful home procedures, and discussing pain outside of the child’s bedroom so that it can remain a safe space where the child can relax.

He also states, for both children and parents, patients and non-patients, that cell phones should be put away at bedtime for a good night’s sleep!


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