Finding a way to keep dressings in place for the upper body can be quite a challenge. Some people do well with ready-made garments made to accomplish this, such as Tubifast garments made by Molnlycke.
However, every patient is different and in my daughter Sarah’s case, these garments were too snug, especially in the arms, and hardly comfortable for her. For years I have made similar retention tops out of Surgilast or Spandage elastic retainers. The beauty of these home-made garments is that you can customize them, making the top itself or the sleeves as long as you like and you can make the neck come up higher to secure dressings in the collar/neck area. You can also make the armholes larger to provide even more comfort. Because Sarah has a feeding tube, I cut a small hole in the front to pull the tubing out and it holds everything nicely in place. You can wash and reuse these tops many, many times. (Note: I find that the Spandage brand holds up to more washes than the Surgilast, but either works well).
Cut some Surgilast or Spandage for the torso and some for the sleeves as the pattern below shows (Figure 1).
The size depends on what is comfortable for the person. Sarah is 13 years old and weighs 100 lbs. I currently use a size 10 for the torso and an 8 for the arms. To assemble the shirt, I stretch the torso piece over a box so that the corners of the box are sticking out through the armholes (Figure 2).
This makes it very easy to attach the sleeves. To attach the sleeves I stretch them over the corners of the box and stitch them to the armholes using a strip of 1” gauze. I attach a safety pin at the end of the gauze to weave in and out of the Surgilast as if I were hand-sewing. Knot the 1″ gauze to finish off the underarms, and you are done (Figure 3)!
The following illustrations are an example of a hand wrapping technique found to be helpful in the protection and preservation of RDEB involved hands. The instructions are for very small hands and some adjustments probably need to be made for larger hands. Lorraine also have some suggestions if anyone is having trouble with the thumb pulling in.
Please note: these instructions may seem overwhelming at first, but after a little practice and as your child gets used to the process, it becomes a worthwhile routine.
Keep in mind the positive results and don’t get discouraged!
Note from the webmaster: this is a graphic intense page. I recommend waiting for it to load and then print it out.
WATCH THE VIDEO OF THIS DEMONSTRATION AT THE STANFORD WEBSITE:
Step 1 is an optional application of Vaseline Gauze to the palm of the hand. Use a 3″ X 9″ piece of Vaseline Gauze. Cut about 2″ off one end, then slit lengthwise about a 4″ length, about 1″ down from the top edge.
Wrap around hand with 1″ strip between thumb and index finger.
This provides some resistance from retracting.
Fingertips can be left exposed to some degree, so that tactile sensation can be experienced.
At this point it may be necessary to start a 2nd roll of 1″ gauze. Make one overlap and continue.
Views 10-19 Front of Hand
Spaces in palm bandaging will be covered by criss/cross bandaging of web spaces.
Web spacing can be randomly done. The point is to cover any open areas of the palm while
gently pulling a wrap between each web space
Be very careful to never wrap or pull too tight!
Be sure to have slight tension in web spaces.
Suggest wrapping additional 1/2 roll of bulky bandage around arm from the wrist to the upper arm. (Held by Tube Gauze) Provides padding of forearm and elbow.
By Sheri Coil – with the assistance of Brandi & Alex
The arms are all wrapped and the under-prep is done; the creams, ointments, lotions and potions are on, the non stick dressings are applied… and we are ready to start the torso.
Picture of just arms done, bare torso
We start with a 4″ Kendall Conform roller bandage (can be 3″ for newborn) and take one lap around the body. The bandage will then cross over the back and pass over the shoulder,
Pic of Brandi going over shoulder
around it to go to the back again under the armpit.
Pic of Brandi making cross X in back
Actually – it does not matter whether it starts to cross on front or back, the pattern is the same.
Picture of starting in front
It will then pass over the opposite shoulder, around it and back thru to back under armpit. It will keep going around the shoulder to the front.
Picture of it going over the shoulder to front
Now the same basic pattern will be used to make a cross X in the front; across the chest to armpit
Pic crossing chest to ap
around the shoulder and across the chest to complete the X. Finish wrapping the torso.
Pic of torso wrapped
This is the base wrap. From here are options. For light wrap, we go around the torso with 4″ J&J Sof-Kling to give more strength to body wrap. Add your padding where ever you need it for protection and absorbancy.
Picture of Alex back with padding
Finish with stretch gauze, which we will talk about later.
The heavy duty, protect the armpits from most assault method is what we use the most now. After the Conform layer, we use a layer of Kerlix.
Pic of kerlix around body
Go around the body, over a shoulder
Pic going over the shoulder
and around the upper arm.
Pic around arm
Cross over the body and around the other shoulder and upper arm. This pattern of crossing over and around should be used until we have done as much as can be covered. We wrap one layer around the rest of the body to the waist. We also put a layer of Sof-Kling over the top of this for more strength. Remember, our kids are very active and we want them really protected.
Pic all done
Method 1: this is a single tube sleeveless shirt. Take a piece of tube that is the length you need. Our kids use one about 15 inches long. About 3 or 4 inches down, make a snip into each side.
Pic of snipping
put one arm through one of the snipped holes.
Pic putting it on
Pass over the head, putting it into the tube end hole and the other arm through the other snipped hole.
Pic of done
Method 2: This idea came from Lorraine, Garrett’s mom. It is the super dooper keep those armpits under control method. I love it and have adopted it. It also keeps the stretch tube gauze away form the neck when you need it away, because it makes a v-neck tee shirt. Take two pieces of the torso tube gauze and about 5 or 6 inched down one side make a snip.
Pic of snip
Take the first and gather it all up with the short side of the cut towards you.
Pic of putting it on
Slip it over the arm putting head
Pic of slipping over head
and the opposite arm through the hole
Pic of putting over arm
and pull it down the body. Do the same on the other side.
Pic of one side done (with colored gauze so it is more easily seen) and finished
Method 3: This is for those times when you need to really keep dressings on the neck. Using method one, make your side cuts much further down. When you put it on, it will form a turtleneck.
Pic of turtleneck
Thank you Cristina.
Method 4: I devised this method because, while the way the armpits in method 2 were protected was great, it leaves a deep vee in the center chest and back where the bandages were not protected and kept under control. Take a piece of tube gauze, about body size and about 15 inches long. On one side cut a 2-3″ slit.
Pic of snips on stretch gauze
On the other, cut a 4″ or so slit. With the short slit up, pull the tube gauze over the head, with the head going through both cut holes. Put an arm thru the long slit.
Pic of putting it on
Then into the “sleeve”. Put the other arm into bottom hole and out the other “sleeve”. Now you have a crop top with sleeves.
Pic of arms done
If you finish this with a method #1 sleeveless top it will cover everything well.
Pic all done
Here’s some pics of Armpit bandages made of soft cloth:
and what they look when they are on:
They slide on like this (top) and tie up like this… (bottom)
This is a personal video of the late and beloved Sheri wrapping the armpits and torso of a child with EB (Epidermolysis Bullosa) taped at Stanford in January 1998. There is a lot of chatter back and forth, some of which is not clear as there are some children crying etc on the background (including my Nicky, 14 months old at the time) but it’s still a useful video that might help some.
The following is the way we wrap the hands (and arms while we are so near) to reduce the mittening deformity that RDEB causes.
After cleansing and debriding I use a lot of Alwyn cream or what ever else I have used before it came along. The open wound or skinless areas get Mepital first, then Vaseline gauze.
We have had excellent luck with the Mepital preventing sticking bandages. The oozy serum stuff can drain right through it to be absorbed by outer gauze. And the creams and ointments can get back to the wounds. The Vaseline puts up a further barrier to sticking.
The gauze starts on the top of the hand. I use Kendall conform 1″. You can see the Mepital under the Vaseline gauze. Please note that the wounds on this arm are all self inflicted from scratching. The areas she doesn’t scratch are very clean. I used this area to demo on because it needs the works as far as under gauzes
The gauze then goes around the thumb a couple of times, until it is wrapped and then around the hand, over the top and around the first finger, around it til wrapped, and around the hand to the next finger…..
After the fingers are wrapped, I go around the hand and come up through each web space. Two going around the first way and then an extra half wrap around the wrist to make the last one cross over the first two. Clear as mud, huh? Ggg
Then I wrap a two inch Kendall Conform bandage over the wrist, around the hand one loop and then through the thumb space and on around the arm on up Coming back down the arm, I pad the armpit, elbow and anywhere bad and roll the bandage right over it. I use Kerlix for that padding, cut to what I need. I just roll the bandage on.
No pulling, but not loose. It just needs to support the skin, not cut off circulation or cause mis-shaping over time.
I use tube gauze over everything. I do not like to use tape at all.
Here she is, all ready to go! Our Dancing Queen
Here is the Video of the wrapping technique recorded in January 1998