Garrett's House is dedicated to the support, advice, and education of a genetic skin condition called Epidermolysis Bullosa or EB for short. Currently there is no cure or effective treatment for EB. Please take a moment to learn about EB, and how you can support others who struggle with EB everyday. Garrett's House also honors the memory of those who lost their brave fight against EB. Please check out the Garden of Angel to learn more about the precious butterfly angels.

October 6, 2024

EB Related Eye, Mouth and Nose issues

EB can affect all aspects of the body; including the eyes, mouth, and nose.


Here are some tips from others with EB for those areas:


MOUTH

Those with EB are often affected by wounds in the mouth that can be painful, and slow healing which makes eating, drinking, and speaking difficult.  Some find swishing with salt water can be helpful.  Others find that magic mouthwash or Carafate can provide temporary relief from the pain


EYES

Eye Issues are a common and painful complication in those with EB.  When the eyes become dry, they can become damaged easily, causing corneal abrasions.   Keeping the eyes lubricated daily, but especially at night.  It is recommended that those with EB use preservative-free eye drops or eye ointment frequently to prevent abrasions.   Everyone has their own preference on which eye drops/ointment they use.  When corneal abrasions are frequent or begin to interfere with daily life, bandage contact lenses are often used.  These lenses are just like contact lenses and not only provide immediate pain relief and protection while the abrasions heal. Many with EB wear them daily to prevent corneal abrasions.  The most common brands used in those with EB are Air Optix Day and Night Aqua 30-day lenses. 


NOSE

Just like the rest of the body, the nose can be affected in those with EB.  The inside of the nose can blister or develop wounds.  Dry weather can cause nose bleeds as well.  Using saile nose spray or saline nose gel to help keep the inside of the nose moist to help reduce wounds and nose bleeds from developing.   When wounds become chronic inside the nose, scabs can occur, along with inflammation.  Over time the opening of the nose can scab closed, interfering with breathing.  Using a humidifier while you sleep, along with saline spray/gel can help keep the inside of the nose clear.  

Infections in EB: How to prevent them and how to treat them

While skin infections in EB are common, there are many things one can do to prevent infections. The following advice was given to me by an infectious disease doctor.

Prevention

1. ALL wounds need to be bandaged. Open wounds can easily become contaminated with bacteria causing an infection to start. Keeping wounds covered with bandages as they heal, not only prevents infections but also protects the wounds from further damage while they heal.

2. Bandages need to be changed daily and the skin needs to be cleaned daily. Some bandages need to be changed multiple times a day if there is heavy drainage.  The longer infection drainage sits on a wound, the more infected it becomes and the longer it takes to heal.

3.  Only use bleach when you have an active staph or strep infection, and no more than 3 times a week. Since it is cytotoxic it will kill both good and bad bacteria.

4.  Take showers, not baths.  Sitting in a tub of water with open wounds allows bacteria to spread to other open wounds.  A shower doesn't have to be like it sounds.  It can be sitting in an infant bathtub, making up a bowl of warm water and soap (or whatever you use in the bath) and gently pouring it over the body to clean it.  It could also be letting a toddler sit in the bathtub with just enough water to play in, and using a bowl or pitcher of warm, soapy water to clean them with.  But however you do it, clean the bathtub before and after bath/shower time.

5. Wash the clothing, bedding, towels, and blankets of those with EB separate from everyone else in the household to prevent the spreading of bacteria.

6.  Frequently clean your child's toys and other objects in the house they touch a lot- the TV remote, computer mouse/keyboard, door knobs, light switches, the toilet, fridge handle, etc.

7. Change clothing after coming home from school, work, and medical appointments.



Signs of an infection

  • red or swollen wound, sometimes it will feel hot
  • foul odor
  • excessive drainage )more than usual)
  • excessive pain and/or itching (more than usual)
  • a fever

(Greenish-blue drainage can indicate a pseudomonas infection. Cloudy, pea-green, or yellowish drainage can indicate a strep or staph infection.)



Only a wound culture performed by a doctor can tell you what type of bacteria is causing the infection. 


The typical treatment of an infection

Treatment depends on the person's age, previous history of infections, and recommendation of their medical team.

Typically skin infections are treated with topical antibiotics, such as Polysporin or Bacitracin. Sometimes a prescription-strength topical antibiotic such as Bactroban is necessary. Only use Bactroban as prescribed. Overuse of it can cause your body to become resistant to it and it will no longer work when you really need it to. The same thing applies to oral antibiotics. Use those only when necessary so your body doesn't become resistant to them either.  In addition to topical and oral antibiotics, there are other home remedies that you can do to help eliminate the bacteria. 

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 of water.

Vinegar baths or compresses can be used at any age. Be sure you rinse well with clear, clean water after a Vinegar bath, otherwise, excess itching and irritation may occur. 

For a Staph or Strep-related infection, (including MRSA) you can take a bleach bath or apply bleach compresses to the infection area to help kill the bacteria no more than 3 times a week. Bleach is cytotoxic (meaning it kills both bad and good bacteria. When you kill off the good bacteria, things like pseudomonas and yeast start to take over) 

Bleach Bath Formula for Adults and Children OVER the age of 1:

Mix 1 teaspoon bleach in 1 gallon of water.

For Children and Infants UNDER the age of 1, 

Mix 1/2 teaspoon bleach or less to 1 gallon of water.

No matter what age, rinse well with clear, clean water after a bleach bath, otherwise excessive itching and irritation may occur.

Chlorhexidine is commonly used among those with EB, but it is also cytotoxic


NEVER mix Vinegar and Bleach together in the same bath. A chemical reaction can occur and produce a toxic fume causing respiratory issues.  In addition, adding other agents such as soap, salt, or bubble bath can alter the PH levels of the bleach (or vinegar) solution making it less effective against the bacteria.  It is also vital to use the correct ratio of water to bleach, or vinegar to water.  Too much water can dilute the bleach (or vinegar) making it less effective, while too much bleach (or vinegar) can cause stinging upon contact with the open wounds


How WE treat infections.

1- cover all open wounds

2- clean the wounds and change bandages at least once a day, sometimes more for heavily draining wounds.  

3- we start with topical antibiotics and/or antimicrobial dressings before we use oral antibiotics UNLESS we have multiple infected wounds and/or a fever is present.  

Some examples of antimicrobial dressings: Xeroform (NOT safe for use on Infants) Mepilex AG, Polymen AG or Biatain AG (also NOT safe for use on infants or young children) Hydrofera Blue Ready Foam,  and dressings impregnated with medical grade honey,   There are also topical antimicrobial agents: silver gel (NOT safe for use on infants or young children) MediHoney, essential oils that have been safely diluted for the age of the person.

Since we switched from baths to showers and followed the above steps, we have seen a significant reduction in the occurrence of infections.