Day-to-Day care of a baby with EB
This will be an ongoing list as I think of other things to add or if you are the parent of an EB child and have something you want to ad, please email me and I'd be happy to add it to the list!
Holding your child
It is best not to pick an EB baby up under the arms as it could cause blistering. It is better to gently roll them from side to side onto your arms. Or many families have found great success carrying their baby around on a standard bed pillow, egg crate foam or memory foam. It is soft and allows you to hold your child w/o accidentally hurting them.
Feeding your child
Some EB babies tend to take a very long time to eat only eat small amounts at a time.
The Heaberman Feeder/Special Needs Feeder is a good bottle to try as babies do not have to suck as hard to get the formula. Others have had good luck with the Playtex drop-in bottles. You can squirt the formula into their mouth if need be.
Dressing your child
Some EB babies can wear clothes, others can not. 100% soft cotton seems to work the best. Avoid zippers, rough fabric, and rough seams. Many make their own clothes out of soft cotton, or line clothes with silk or stain. Some families have found success with the material used to make bath suits. It allows the skin to breath yet, reduces the friction at the same time.
Other recommended brands:
Kicky Pants (made of soft Bamboo Fabric)
Hannah Andersen
Bathing your child
Some just done sponge baths, other do full baths in the bath tub. Some take all the bandages off first, others soak them off, and others will bath them with the bandages on and then remove and re-dress on limb at a time. You use the sink or bath tub with towels for the baby to lay/sit on. Others have used small inflatable bath rubs which are softer than the regular tub and easy to clean afterward. Bath Sponges are ok but they can harbor a lot of bacteria in them even if you rinse them out. It is recommended that if you use a bath sponge to replace it frequently.
Hands
I get a lot of questions about what do to about the hands. Some wrap, some do not, some just use gloves. Its best to do whatever works for your child, but I will tell you the one thing NOT to do is to wrap the entire hand up in a ball like a boxing gloves. Not matter what form your have, having the hand and fingers in the same position all the time increase the risk for the fingers to web and contract. It can also cause range of motion issues in the wrists. I know first hand how difficult it is to individual wrap small infant fingers, but I know in the long run you will be glad you did. Other have also wrapped at night and left the hands out or in gloves during the day or even just unwrapped for a few hours a day to allow the child to move their fingers and develop fine motor skills.
Wounds on the face, ears and head
Those are the hardest to deal with because they can not be easily wrapped. For blisters many have found to lance the blister and apply a small around of antibiotic ointment until it closes and then apply whatever moisturizer you use till it has healed up. Some head wounds can be wrapped if the wound is large, but many babies will not leave the wrap on.
Teething
When it comes to teething, EB babies are really no different than babies w/o EB. They drool a lot, they are crabby and in pain. Some things other EB parents have found that worked for their child:
~Getting a soft cloth wet, putting it in the freezer till its stiff and then let the child chew on it.
~Other have used frozen carrots, or frozen bagels.
~Tylenol
~Hyland Teething tablets. They dissolve very quickly and seem to work. You can find them at Walgrees, Target, Walmart and probably other pharmacies as well.
~Personally I have found Oragel to taste yucky and it does burn when applied to a open wound or blister, (even the tiniest one). But everyone Is different and it never hurts to try something at least once because you will never know if it might work!
Solid Foods
Introducing solid foods is up to you. Some babies like them, others do not. It really depends on the child and how involved their mouth/throat is if at all. Some have found rice cereal to be too rough on the throat and have had better luck with Baby Oatmeal. The spoons with the rubber covering are good as opposed to the metal ones.
The fun things siblings bring home from school
If you have older children in school or attend daycare, chances are they bring home a lot of cold and viruses. And chances are it gets passed around the house. It tends to get a little more serious when you have an EB baby in the house, as they have a weekend immune system and can pick up bugs quite easily. RSV (an upper respiratory infection) can be very serious, even fatal in an EB baby who already has airway issues.
Some tips on keeping germs at bay
When your older children get home, make these the first 2 things they do,
1) WASH THEIR HANDS and
2) change out of their school clothes.
Germs can come in on hands, clothes, back packs, etc… Adults and children can even bring home a cold or virus and not become sick themselves.
If there is sickness in the house, try to keep those sick away from the child with EB, which is know is much easier said then done. Wear a mask (like doctors and nurses do) if you are sick yourself. Hopefully it will prevent the baby from getting sick. Lysol EVERYTHING you can in the house. It is still possible your baby will get sick even if you do everything you possibly can to keep them well, which leads me to the next section.
What to do if your baby gets sick
Well that can be tricky sometimes. If they have a stuffy nose suctioning it out can cause damage to the inside of their nose and airway. You can use saline drops to loosen up the mucus and hopefully they will sneeze it out. You can also use a cool mist vaporizer near the baby to help keep moisture in the air. Keep the baby in an upright position to help them breath better. Keep an eye on their temperature. When in doubt, call your doctor especially if the baby seems to be getting worse, is having trouble breathing or stops eating because they are having trouble breathing and eating at the same time. Coughing may irritate the throat and they could cough up a little bit of blood. As along as it is a small amount mixed in with the mucus, you probably do not need to worry, but if they continue to cough up bright red blood without mucus, call the doctor right away because it may be some more serious.
EB babies (and children) can get dehydrates within a matter of hours due to their fluid loss through the blisters. And when they are sick they may drink less. Its important to keep track of what they take in and you can even keep track of what they put. Get a small food scale from the store; weight a dry diaper and then subtract that weight from the wet one and that will give you how many ounces they are putting out. Call your doctor and find out how much your baby needs to drink just to stay hydrated. It maybe different than they number of ounces they need to take in each day to grow and heal. It is a good idea to write down each feeding because by the end of the day you may have forgotten how much they drank up to that point. If they go more than one day without getting as much as they should, or they start to show signs of dehydration, call your doctor right away. You baby may need IV fluids till they are feeling better.
Any of these signs could indicate that your baby is dehydrated or is becoming dehydrated:
~ More than six hours without a wet diaper
~ Urine that looks darker in his/her diaper and smells stronger than usual
~ Lethargy (sleeps a lot, hard to wake, body is floppy when you hold them)
~ A dry, parched mouth and lips
~ No tears while crying
Signs that your baby may be seriously dehydrated:
~ Sunken eyes
~ Hands and feet that feel cold and look splotchy
~ Excessive sleepiness or fussiness
~ Sunken fontanels (the soft spots on your baby's head)
Also if you baby suddenly develops a fever or their temperature drops below 97 degrees call the doctor right away or head to the nearest emergency room. Dehydration can cause terrible complications, even death.
Emergency Kit
It is a good idea to keep a small bag in the car(s) or by the front door with extra bandages, Mepitac tape, extra diapers your child wear (as the hospital may not have the kind your baby is able to wear) and extra bottle (if they use a special one) the names and phone numbers of all your babies doctors, medical history/records if you have them and anything else that your baby uses or needs that you might not be able to ‘run out and get’ if you were to end up in the hospital suddenly.
Also somewhere on their car seat place a label with a brief description of EB, names and numbers of their doctors and emergency contact names and numbers in case you were to get into a car accident were not able to tell the EMT’s about EB. You can also put something similar into the diaper bag, your purse, etc…
