Developmental milestones; Eye issues; Dental issues; and Sleeping issues Developmental Issues:
Many babies with EB are behind developmentally. It is not uncommon for an EB baby to skip crawling. Many also do not walk till the age of 2-3 and sometimes even later than that. As hard as it is not to worry, they will walk when they are ready.
If they do crawl, you can use nursing pads to protect their knees and elbows. (They also make good butt check padding as well!)
One EB parent also had this suggestion: Get one of those GIANT inflatable pools and put it in your house (minus the water) and allow you baby to play/crawl/explore in there. It is very soft and you can even add foam or blankets to make it soft. It allows your baby to play, yet remain safe and you do not need to be by them every second to make sure they do not get hurt.
In a survey taken among parents of EB babies and children, it was found that the average age babies with EB rolled over is 6.5 months; sat unsupported is 7.5 months; crawled is 11 months; pulled to a standing position is 13.5 months; and the average age a child with EB walked is 23.5 months. There was variation among the different forms of EB as well.
I am sorry to say that MANY EB babies do not sleep through the night for a very, very long time.
Here are some reasons they wake up so much:
~they are hungry. Many babies with EB can only eat small amounts at a time due to oral blistering. So therefore they tend to eat a little bit frequently.
~they itch. As wounds heal, they tend to itch. There is medication to help with the itching. It is called Atarax. It is available from your doctor.
~acid reflux. A lot of EB babies suffer from acid reflux. It worsens when they lay down for a long period of time. If left untreated, reflux can cause blistering and erosions in the esophagus.
In a survey taken among parents that have children with EB, the average age to sleep through the night regular was 18 months, though it did vary greatly among each form of EB. With Junctional 10 months; Dystrophic 22 months; and Simplex 19 months.
Even before they get teeth it is a good idea to start to clean the baby gums so that they get use to having it done. Some EB babies mouths are so fragile that brush/cleaning does more harm than good. But if it can be done safely start early. MANY with EB can have dental issues for many reasons. Many patients with EB have major (and sometimes minor) dental work under general anesthesia in the hospital to prevent skin damage. The use of mouth washes (alcohol free) and fluoride rises are recommended in older children. It best to find an EB friendly dentist early on so you will have someone you trust to work on your child and cause as little damage as possible.
It is best to use a really, really soft tooth brush. Gum makes some really soft toothbrushes. Also some with EB use something called a toothettes to clean their teeth. It is a soft sponge on the end of a stick.
Our suggestions from others with EB:
~paint your teeth with the Act Fluoride mouth rinse using a Q-tip.
~ Listerine Smart Mouth Rinse does not burn on open sores and it will kill bacteria and provide cavity protection for children over the age of 6.
~gently wiping the teeth with a wet piece of gauze or even a q-tip.
In a survey taken among parents that have children with EB, the average age for cutting teeth for a baby with EB was 8.5 months, though it did vary slightly among each form of EB. With Junctional 9.8 months; Dystrophic 7.6 months; and Simplex 9.2 months.
Tips for crawling
~ some use nursing pads as knee and elbow pads. You can either place them over the skin or after you wrap the knee with gauze and then place the pads on securing them with a light layer of gauze. (these also make great butt cheek pads for wounds or just extra protection!)
~ some parents have sewn padding onto their child’s clothes.
~ some use the terry cloth wrist bands that runners use as knee and elbow pads.
~ you can also use Mepilex as padding for the knees, elbows and feet, but that does get expensive.
In a survey taken among parents that have children with EB, the average age that infant with EB started to crawl was 11 months, though it did vary greatly among each form of EB. With Junctional 22 months; Dystrophic 9.5 months; and Simplex 12.5 months.
All forms of EB have the potential to have eye issues. But it is more common in the recessive forms of EB.
A scratch or blister on the eye called a corneal abrasion, and they are usually quite painful. Those who get them can not usually open their eyes for a few days. Once they occur you can apply antibiotic eye drops, such as Gentamicin Sulfate Eye Drop to help prevent infection; apply warm compresses and stay in a dark room. You can also give over the counter pain relievers to help with the pain. The best thing to do is prevent them before they occur. For those with severe EB parents usually apply an OTC eye moisturizer such as GenTeal or Refresh PM (eye ointment) in each eye before bed each night. The eyes tend to dry out while sleep and even the act of REM sleep (rapid eye movement) can cause abrasions. Also traveling on a plane, or being in other places where the air is really dry, can also cause issues. Rubbing of the eye can do damage as well. You can also run a vaporizer in the house to keep some moisture in the air especially in dry months of the year.
Other products recommended by a parent of an RDEB child:
1. Muro #128 NaCl ointment
3. Refresh PM
Symptoms of a Corneal Abrasion: generally they eye with the abrasion waters, is red, may be swollen from the inflammation. You may notice it being hard to blink, or they rather keep the eye shut. This because the Cornea can rip each time you blink in that eye. It is best to keep the eye shut and let it heal, with out further trauma.
Tips for walking:
~Let them do it at their own pace.
~Encourage them, but do not push them.
~If wounds on the feet are an issue extra padding might help.
In a survey taken among parents that have children with EB, the average age that children with EB began to walk was 23.6 months, though it did vary greatly among each form of EB. With Junctional 26.3 months; Dystrophic 16.1 months; and Simplex 29.3 months.