How To Make Surgilast Shirts

By Maria Oliveira

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).

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).

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)!

Figure 3

Here’s what the finished product looks like:

Figure 4

Mom to Sarah Oliveira (13 years old, RDEB) and David Oliveira (20 years old, EB Free).
Lives in Elizabeth, New Jersey and works as administrative assistant at Merck & Company.

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Hints From Grandma Shirley

Grandma Shirley holding Nicky

Shirley, grandma and caregiver of Jennifer, an RDEB patient, shares her hints and tips and her knowledge about EB care with us.

Constipation

Hi all, I found this article in a pamphlet put out by dEBra International in their Nutrition section. Thought it might be helpful:

Constipation in babies and young children is often the result of an inadequate fluid intake, due to a reduced intake of feeds and/or increased requirements in hot weather. An EB sufferer with extensive blistering may have fluid requirements considerably above normal.
Constipation can be aggravated by iron supplements. It may also occur for no apparent reason. The frequency with which the bowels are opened is less important that the degree of discomfort felt. Provided the motions are soft and painlessly passed, it is not essential that the bowels are opened every day.
For an EB baby, straining to pass even a moderately bulky motion may cause pain and blistering of the delicate skin around the anus. Fear of pain on passing further motions can quickly lead to withholding the motion and before long a vicious cycle is set up as he becomes more constipated and appetite is reduced.
Because regular bowel movements also depend on a regular intake of food, a poor appetite and irregular feeds can lead to harder, drier motions.

The importance of preventing constipation cannot be overstated. Try to ensure a generous fluid intake i.e. at least 150 ml per kg ( 2 – 3 ounces per lb.) per 24 hours, for young babies who are not receiving fluid from foods. If your baby refuses plain, cooled, boiled water, offer well-diluted fresh fruit juice (i.e. 1 teaspoon juice diluted with 100 ml water) or give ready-to-feed baby juice diluted with an equal volume of water.
If extra fluid makes no difference to the constipation, try adding a teaspoonful of sugar to all baby feeds for several days. Alternatively, try giving the diluted juice from a tin (can) of prunes or the water in which dried prunes have been stewed. Once you baby is taking solids, try to include fruit and vegetable puree daily. From about nine months, offer wholegrain cereals such as Weetabix (English cereal – don’t know what the American version is), and from 10 – 12 months, include baked beans and sweet corn. The fiber in these foods, combined with adequate fluid (about 100 ml per kg. (1 – 2 oz. per lb), will help to keep the motions soft and they will be more comfortably passed. Unprocessed bran should not be given. If constipation persists despite these measures, a gentle laxative may be required. It is important to give this regularly as a preventative measure rather than waiting until he is very constipated. Discuss this with your doctor also.

Eye Abrasions

Here is the information I have learned from Jennifer’s experience with eye abrasions. Please discuss it with your doctor.

Jennifer has had eye “blisters” for many years. Before she came with me they were untreated and she has ended up with scar tissue on her left eye cornea. If this isn’t treated it can cause blindness. I took her to an optomologist who just happen to be familiar with EB, as he worked at St. Jude’s hospital and said there were children there who had EB. We were very lucky to have him. He did a thorough exam of Jenn’s eyes. This is what he told us:
EBer’s have a great tendency to “dry eyes”, as they are mucous membranes. He prescribed “Isopto Homatropine”. This is a drop that you put in the affected eye, and it dialates the pupil and relaxes the eye taking away the pain, and giving it a chance to rest and heal. They should be in a dark room as the pupil is dialated and light will cause damage. About five – ten minutes later eye OINTMENT should be put into the eye to keep them very moist. We use Refresh Plus Eye Ointment. The dosage – one drop three to four times a day – and the ointment as often as needed, even if it is every hour. After the eye begins to get better, use the eye drops, not the Isopto, again we use Refresh or Celluvisc Lubricant Eye Drops (I like this better – it is a little thicker) as often as necessary. When Jenn is on the computer I keep a box of Celluvisc right next to the PC and remind her often to use them, even if the eye feels good.
While she is going through the initial beginning problem it is VERY painful, swollen, red and VERY feverish. I put a few ice cubes in a clean white face rag and she holds that on her eye. This keeps the fever down and she uses MANY ice cubes, as they melt fast from the fever. Both of us dread this problem, as it is so painful for them.
I have no problem keeping her in a dark room, as she usually stays in bed for the three days, and sleeps…. Dr. Tether said the reason this happens is that EB will cause very dry eyes. When they sleep and go through the REM eye movements, their eyes blink and that scratches the eye lid and cornea, which cause the blisters. Also, as we all know they sleep with their eyes open slightly. Also, I keep Jenn’s hair back with a twister, especially at night, cause a little piece of hair that can get in the eye will also irritate the eye and cause a blister.

Prenatal Diagnose

There is now a test that can be done to see if the baby has EB. Then if he/she does, you will have to make a decision that of course none of us even want to think of – to abort or not. You will need to contact Dr. Angela Christiano – email addy: amc65@columbia.edu to get the details. She is the Dr. who invented this test. She is also very active in research for EB at a hospital in Philadelphia, Pa. It has been done and it works. There is another EB mom who decided to have more children and had this test done. Fortunately the baby did not have EB and all went well. Good luck.

Infections and Wound Dressings

A friend, Nancy has twins, 21 yrs, Katie and Kelley and shared this with me. Since it is for the good of all I want to share it also.

Regarding infections: Nancy suggested it is better to rotate topical antibiotics – gentamycin for about 3 wks to a month, then bactroban, and areas with a lot of discharge/seepage silvadene. She feels it confuses the bad bacteria, and I agree.
Some of the antibiotics you may want to mention to your Dr. are: Cipro, Cephalexin, Rifampin, Sulfa, Minocyclene, Augmentin, Vancomyacin. Cipro does not work for Jennifer. Some of these may not work on your EBer. A bath soak with epsom salts – half a quart size container to a tub of water. When there is a very stubborn infection that does not want to respond, try a vinegar bath – about a gallon of vinegar in a VERY full tub of water. Thanks to Nancy for this info.

For those of you anticipating Apligraf surgery. Jennifer had this done, and it worked about 70 % – better than nothing – right. Of course it will slough off as normal skin does, and then the bad gene will produce more bad skin – a catch 22. Here are some other options I have learned about:
We are planning to use one of these new options when the next skin graft is necessary – which appears to be soon – on her chest… : Oasis, Cook Manufacturing Company, Andy Cron, General Manager, 800-468-1379, EXT 3456, Fred Roemer, V.P.,800-457-4448 EXT 204. Mention Gary Cummings from Winfield Labs referred you – I will tell you about that in a minute.
There is a Silicon Gel Sheeting called Duo Dress manufactured to put over scar tissue to make it more soft and pliable, and possibly invisible. The only information I have regarding this is: Mark Dillon, President, BioMed Sciences, www.Silon.com I am not too familiar with this. It was mentioned to me by Gary Cummings and I have not had a chance to research this as yet. When I do, I will get back to all of you.
Of course there is the Ortec product called CCS (Composite Culture Skin), which FDA has just approved for use in the U.S. That is the product I am leaning toward for the next graft Jenn has.
I have been introduced to a wound contact dressing called N-terface this summer. I find it as good in a lot of ways as Mepitel, and cheaper. I am not saying Mepitel is not the best, it is just when you can’t afford it you take the second choice. They make several products and if you contact Gary Cummings, President, Winfield Laboratories, 800-527-4616. They make the N-terface and also Breakaway, which is a pad to go over the N-terface to absorb the excess seepage. Gary will send you samples I am sure. Please tell him I referred you. They are also working on a “vest” to cover a much larger area for those who need it. It is new, being introduced at the next meeting in California next week or two. He is sending me a sample. It is manufactured in China and is VERY inexpensive. These products work for Jennifer very well.
I just feel it important to share this with you all – it may work for your EBer also. Please let me know…. As most of you know Jennifer is just ending the Accutane Study at Chapel Hill – our last visit is Oct. 1 – 3. 2000. The Study will end in November. The results will follow a bit of time later as some are not finished for sometime. It does appear that FDA will approve the 5 year study. Soon as I can I will post from the results from the start of the Study in March to the end.

Blisters on the bottom

For Blisters on the bottom I suggest using a product called MEPILEX. It does have a sticky side which goes onto the wound. It will not stick to the wound, but will around the “good” skin. It comes off very easily with no damage. It will absorb the “seepage”, and can stay on until it is completely saturated. If it becomes saturated it will come off by itself. Instead of wrapping between the legs like a “vest”, we now use HYAFIX. It is the only type of tape we can use. It will come off very easily if you take a 4 x 4 (non-sterile), saturate it will alcohol and ease the tape off. The little bit of alcohol will not hurt the skin, just don’t get it on the wound. Place the MEPILEX on the wound and surrounding area about 1″, place about 2 – 4 x 4’s (sterile) over that, take the HYAFIX tape and criss cross it over the 4 x 4’s, just enough onto the “good” skin to hold it in place. Leave it on until the seepage comes onto the 4 x 4’s. You can also put your topical antibiotics onto the MEPILEX. Just keep it away from the outer edges so it will stick to the skin. If you put the anti close to the edges the MEPILEX will slide off the wound. The MEPILEX will act like a cushion and protect the wound. Try it, you’ll like it… 🙂 Also, for those of us who do not use MEPILEX, or prefer to use something else: in the past we have also used VISCOPASTE (this is gauze saturated with zinc oxide, and also MEPITEL. In this case, we cover the MEPITEL and/or VISCOPASTE with a sort of sponge called ALLEVYN, before we put on the 4 x 4’s. This absorbs the exudate. This is also a good method. The VISCOPASTE was especially effective. Zinc is good. There is another product called BREAKAWAY, that has a built in padding. It is also good. The diaper will also hold the bandage in place. Also, if it gets wet or dirty, just change the 4 x 4’s, that is of course if the MEPILEX is dirty also. Gee, I don’t mean to insult your intelligence.. Well I hope this helps. When Jenn was a baby and until she came with me in 1997, she had this problem. Now she has the scars to prove it… We do keep a nursing ointment (we call it BLUE GOO) on the scars if they look like they are starting to breakdown, and it works…. another thing that we have found as far as this is concerned has to do with bedding because it can be quite uncomfortable to sleep. We have found that babies sleep better on a sheepskin blanket.

Jennifer’s Experience w/Anemia

Jennifer had been going to Chapel Hill, NC to the EB Registry as she was on the pilot study for Accutane. We go every three months via Angel Flights. They do thorough lab reports on her each visit, and she is seen by Madeline Weiner and Dr. Jo-David Fine. In June, 2001 we all noticed that Jenn’s RBC (red blood count) was really dropping. At that time her Hematocrit was about 26, which is low. Originally it had been at 32, which was do-able. Normally the Hematocrit should be between 35 – 45. However, in EBers trends are very important. For example, when Jennifer’s Hematocrit was at 32, she did very well, but the Hematologist wanted it higher as there is a “leak in her bucket”. Will explain that later.

We got in touch with her doctor here in Indialantic, Fl. Doctor suggested we have her kidneys checked. Kidneys produce the erythropoietin which stimulates the bone marrow to make the red cells. The kidney doctor did a thorough exam and found the kidneys are functioning properly but we needed to see if they were producing the Erythropoietine. He referred us to a Hematologist and we saw him sometime in July. When they drew blood the first time her Hematocrit was down to 23. Very bad. The Hematologist ordered a “mid-Line” and she was given intravenous iron (ferritin) every day for two weeks. A mid-line is actually a line that is introduced through the blood vessel and goes up the arm to the shoulder area. A pic-line is the same thing, except it goes past the shoulder area and down close to the heart. With a pic-line you also need an x-ray to be sure the line is not too close to the heart. This is all done on a out-patient basis. You should not have them draw any blood from the mid/pic-line as it will clog up the line and cause a blood clot. This is not a blood transfusion. However, a blood transfusion works for some EBer’s; in this case it was not what Jennifer needed. This was done at the I.V. Therapy Lab. At the end of two weeks they drew blood again, and the Red Blood Count (RBC) had gone up, slightly, but not enough. The Hematologist then prescribed Procrit Injections (Erythropoietin) to be given – I believe this was done once a week, with blood drawn every two weeks. Procrit is a pharmacological erythopoietin and is usually used in patients with depressed bone marrow function. This is not the usual cause of anemia in EB patients and a hematological work-up should be done prior to treatment with this drug. Other causes of anemia will not be corrected with Procrit and there are risks involved with this treatment. Jennifer’s RBC and Hematocrit was coming up and the doctor suggested we continue once a week with the Procrit Injection, with blood drawn once a month to keep checking the hematocrit and rbc. Jennifer’s hematocrit is now at 37.5, which is good. There is a pronounced difference in Jenn’s energy level and her skin is really looking good. Jennifer still gets Procrit every Friday, and we see the Hematologist and have blood drawn once a month. A great description of why Jennifer may need the Procreit for a long time – maybe not every week – but every two weeks or once a month – picture a large bucket full of liquid, with a tiny pin-hole leak in the bottom of the bucket. If you do not take measurements to keep the bucket full, eventually you will empty the bucket. EBers bleed constantly – as their wounds always have some seepage, being blood or some other liquid, usually blood. So it is very important to keep that “bucket full”. 🙂

As we all know, each EBer is different. This was extremely beneficial for Jennifer and that is why we want to pass it on. It may be a good thing for your EBer. Anemia is very prominent in EB and it is so important to keep up their Red Blood Count and Hematocrit.

Anemia is caused by a various number of different causes. First you must establish what is the reason for the Anemia through a Hematologist, and then follow the advise of that doctor.

Cradle Cap

We soak the scalp for 15 minutes with Acidic Solution, and it consist of 8 O.Z of saline and 2 O.Z of White Vinegar. And then we put the Olive Oil on the scalp and below is how we do that.

We bought Olive Oil and I part Jenn’s hair where I can see the areas that are dry and I take a 4×4 sterile pad and puts some Olive Oil on it and rub it GENTLY to massage the Olive oil in her head & hair. We put it in my hair every day. If you want it to work leave the Olive oil in the hair for about One day to Two days.. Check for Order, this will give you an idea when to wash the hair or if you can leave it for another day.. If you smell an order you NEED TO WASH hair, and then put the Olive Oil in the hair again.. The scabs that form with come off, but you need to help me a little bit.. If it doesn’t come off will just a LITTLE force then leave it and put Olive Oil on it.. This method has worked for me and I am sure that it will hopefully work for you all.

Love to all

Wrapping the Torso the ABC way

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

Stretch Gauze:

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.

Wrapping Hands & Arms The ABC Way

By Sheri Coil – with  the assistance of Brandi

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