This page contain information that either I or have parents have learned after the fact and wished that had known about these things BEFORE it became an issue with their child.  As with many things when it comes to EB, not all with EB have any of these issues, but I wanted to make people aware of them just in case!

DISCLAIMER:  I am not a doctor, nurse or any other medical professional.  I am just a women with EB and a mother to children with EB.  The following information on this page is information I learned along the way either growing up for caring for my kids.  Any advise learned here, should be cleared by your doctor before trying it.

Tips on dealing with Infections

There are 4 main types of infection those with EB get: Staph Strep Pseudomonas MRSA - (Methicillin-resistant Staphylococcus Aureus) (there are also dozens of other bacterial infection that one can contract, but these seem to be most common among EB)

Gastroesophageal Reflux Disease

Debra.org states that: Gastroesophageal reflux is the back up of stomach acid into the esopohagus in many instances this may cause discomfort and reduce desire to feed. Symptoms of gastroesophageal reflux may include: Cranky and pushing away bottle after a few minutes of feeding. Reluctance to feed. Coughing. Milk may be present in mouth between feeds. If gastroesophageal reflux is suspected it is helpful to consult a Pediatric Gastreonterologist. Physician may order various diagnostic tests such as endoscopy, pH testing and/or various radiographic studies to rule out the presence of reflux.

Signs of Infection (as obtained from www.debra.org)

Signs of infection may include the following. Redness surrounding the wound, or a red streak that spreads toward a more central part of the body, unexplained fever or chills, evidence of pus or yellow drainage or crusting on wound surface or draining from EB wound. A fever may or may not be present. The physician may obtain a wound culture. A wound culture is done by gently swabbing the open area with a long cotton tipped applicator to see what bacteria grows on the wound surface. These culture results are helpful in order for the physician to determine the best course of treatment. Treatments may include various topical soaks and /or antibiotic ointments that reduce bacterial growth upon the wound. Fever is an indicator that there is systemic infection. This usually warrants a visit to the physician for oral antibiotic therapy. In some instances systemic infection may require a hospital visit for intravenous antibiotic therapy. Soiled wounds and wounds covered with antibiotic ointment may need to be cleansed prior to culturing in order to increase the accuracy of the culture result. Itchy skin (pruritus) may be caused by infection, sensitive nerve endings or healing. Scratching of the area will cause further damage to the wound bed. Consult physician about medications to manage itch.

From personal experience, I have also found these to be signs of Gastroesophageal reflux: crying when laid flat on their back; may prefere to sleep in a infant chair or swing; stuffy nose; frequently wakes at night for no apparent reason and rarely I have found to cause diarrhea and a rash that usually is only present after a bowl movement.  Gastroesophageal reflux can also cause blistering and erosions in the esopohagus. Which can lead to eating and breathing issues.  It can also cause a build up a excess mucus and in turn can lead to swollowing, eating and breathing difficulties

A grandmother of an EB baby recommend this site to explain more about Reflux in Infants: http://www.marci-kids.com/

Some common prescription medications used to treat Gastroesophageal reflux: Zantac- known as a H2 blocker; usually taken twice a day and is VERY bitter. Previcid-known as a Proton pump inhibitor, comes in a powder, dissolveable tablets and a reulgar pill.  The powder is mixed with water and has a plesant berry taste as does the dissolvable tablet.  The pill can be broken open and the contents sprinkled over applesause.  Nexium, also is Proton pump inhibitor comes only in pill form and also can be broken in half and sprinkled over applesauce Reglan is an Prokinetic agent which has several effects. It may make the valve between the esophagus and stomach (lower esophageal sphincter) close more tightly, which helps prevent stomach juices from getting into the esophagus. They may also help the stomach empty quicker. Prokinetic agents are sometimes combined with an acid reducer, but their use is limited by frequent, sometimes severe side effects. (source www.webmd.com)

Only a physician can properly dignaoise an infection.  But once dignaosied, they are usually treated with a topical and/or oral antibiotics. There are some home treatment you can do to help prevent infection and get rid of the one you have in conjunction with what your doctor as prescribed.

For a Staph or Strep related infection, you can take bleach bath or apply bleach compresses to the infection area to help kill the bacteria.

Bleach Bath Formula for Adults and Children OVER the age of 1: The bleach formula is: Mix 1 tsp bleach in ½ gallon water (same as ½ tsp bleach in one quart of water). For Children and Infants UNDER the age of 1, the formula is 1/2 tsp bleach or less to one gallon on water. No matter what age, make sure you rinse well with clear, clean water after a bleach bath, otherwise excessive itching and irritation may occur.

Lactose Intollerance

Many with EB particular those with EBS-DM are lactose intollerant. They do much better on lactose free or soy formulas or lactose free or soy milk once they are over the age of one.  Adults have also reported an improvement in wound healing and over all skin appearance  when dairy is eliminated from their diet.  But as with everything, PLEASE check with your child's doctor before changing their diet.

For Pseudomonas Infection, you will want to use an acetic solution and the most common thing to use is Vinegar.

The acetic acid formula is: Mix 1 ounce of 5% vinegar in 19 ounces water. Vinegar baths or compress can be used on any age.  Just make sure you rinse well with clear, clean water after a Vinegar bath, otherwise excess itching and irritation may occur.

What is lactose intolerance? Lactose intolerance occurs when the body cannot easily digest lactose, the kind of sugar found in milk and dairy products. This happens when the small intestine does not make enough of an enzyme called lactase. Your body needs lactase to break down, or digest, lactose. When lactose moves through the large intestine (colon) without being properly digested, it can cause uncomfortable symptoms such as gas, pain in the belly, and bloating. Some people with lactose intolerance cannot digest any milk products while others can eat or drink small amounts of milk products or certain types of milk products without problems. Lactose intolerance is common in adults. The biggest challenges for people who are lactose-intolerant are knowing how to eat to avoid discomfort and getting enough calcium to maintain healthy bones. What causes lactose intolerance? There are three types of lactose intolerance. Adult lactose intolerance is the most common type. Usually, people inherit this type of lactose intolerance from a parent and develop symptoms as a teen or an adult. Most people with this type of lactose intolerance can eat some milk or dairy products without problems. Acquired lactose intolerance occurs when the small intestine stops making lactase, either temporarily or permanently. This can happen if you have a short-term illness such as the stomach flu, a lifelong disease such as cystic fibrosis, or an operation to remove a part of your small intestine. Congenital lactose intolerance is a rare condition that is present at birth. A person with congenital lactose intolerance cannot eat or drink anything with lactose. Sometimes, a premature baby has temporary lactose intolerance because he or she is not yet able to make lactase. Once a baby begins to make lactase, the condition generally goes away. What are the symptoms of lactose intolerance? Symptoms of lactose intolerance can be mild to severe, depending on how much lactase your body makes. Symptoms usually begin 30 minutes to 2 hours after eating or drinking milk products. If you have lactose intolerance, your symptoms may include: Bloating. Pain or cramps. Gurgling or rumbling sounds in your belly. Gas. Loose stools or diarrhea. Throwing up. Many people think they are lactose-intolerant because the symptoms of lactose intolerance are very common symptoms. If you feel sick after drinking a glass of milk one time, you probably do not have lactose intolerance. But if you feel sick every time you have milk, ice cream, or another dairy product, you may have lactose intolerance. Sometimes, people who have never had problems with milk or dairy products suddenly develop lactose intolerance. This is more common as you get older. If you think you might have lactose intolerance, talk it over with your doctor. Your doctor can make sure that your symptoms are caused by lactose intolerance and not by another problem. How is it treated? There is no cure for lactose intolerance, but you can treat your symptoms by limiting or avoiding milk products. You can also take dietary supplements called lactase products that help digest lactose. In time, most people with lactose intolerance get to know their bodies well enough that they can avoid symptoms caused by lactose intolerance

Suggestions for the entire family when dealing with EB and infections

- swab their noses with prescription bactraban to help stop the spread between family members.  Most people carry the staph bacteria on their skin and in their nose  and don't even know it.  It usually doesn't cause a problem until it gets into an open wound. - NEVER share towels, blankets, sheets, etc... -wash bed liens in hot water daily of the person with an active infection -wash your hand A LOT -for children in school, once they get home from school/day care have them wash their hands and change their clothes.  You wouldn't believe the kind of bacteria and germs that can come home from school -change your clothes and wash your hands after you return home from work or a doctors appointment.  -if possible do the same for the person in the family with EB. -disinfect toys of small children frequently to prevent the spread of bacteria.

Mositure

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Those with the recessive forms of EB need extra moisture to aid in wound healing.  However, those with EB Simplex, excess mositure can be bad and can cause more breakdown of the skin.  Fingers or toes with too much moisture can start to curl and web if not allowed to air dry frequently.