EB Is Genetic. Yes, It’s True!

EB, yes, Epidermolysis Bullosa as it may, it’s probably one of the most misunderstood conditions out there. I wrote an extensive “Common Misconceptions” page long ago and even a long “FAQ page” for those with extensive questions about the disorder. These pages have been up on this website for over a decade, in an effort to shed the light on a condition that people have an extremely hard time understanding how it can be genetic.

recessive

Somehow it’s easy to understand how Down Syndrome or Cystic Fibrosis, for example, can be genetic. DS & CF families however, are never told they can cure their condition with food, herbs, or are told that either fluoride, aloe gel, gluten, a nutritional deficiency or a high protein diet can either ’cause’ their condition or… to my horror, claim they can vastly improve it or even ‘cure it’.
To add insult to injury, I was even asked once if EB is caused by the parent in any way… such as their use of illegal or legal drugs or by them using too much sweet-and-low in their coffee or anything of sort.

I am sorry to disappoint. The parent is not to blame, please stop blaming the parents, they did nothing. They were just unlucky enough to lose the genetic lottery. Yes, EB is genetic. It’s true! I am going to explain EB and keep it simple and concise.

There are three major ways a child can be born with EB:

1. Recessively: Recessive forms of EB include all forms of Junctional and Recessive Dystrophic. Both parents are carriers and they have a 25% chance of both passing  their ‘faulty’ EB gene to the baby. (See image above)

2. Dominantly: Dominant forms of EB include all forms of Simplex and Dominant Dystrophic. One parent has the condition and it has a 50/50 chance to pass it on to their child. (See image above)

3. Spontaneous Mutation: EB also can be acquired through a spontaneous mutation. That is, a child is born with a dominant genetic mutation that causes EB, despite neither parent having EB. When this occurs, it is because the gene spontaneously mutated in either the sperm or the egg before conception. There is no scientific evidence that the parents could have prevented such spontaneous mutation, and there are no known environmental, dietary or behavioral triggers for this type of mutation. To this, I might note, years ago a Vietnam Veteran made a point to state that one of his children and a few of his friend’s children were born with Simplex EB, so there could ‘possibly’ be a correlation with Agent Orange or anything they might have been exposed while at war, but no real ’cause’ was ever found.

In an effort to be complete in my descriptions, I must note there is also an extremely rare form of EB called ‘Aquisita’ which is not inherited but associated with autoimmunity to type VII collagen and onset occurs only in adulthood.

But don’t take my word for it. Visit the Debra Website, Mayo Clinic Site or even the Stanford Website for more info.

Do I think things such as food, herbs, diets or anything of sort can help? Of course I do, choosing the right food, vitamins and the right diet helps everyone, with or without EB. However, the way they might or might not help prevent or heal wounds in EB patients, which are caused by the skin which is not produced correctly to begin with, is either minimal or marginal.

Before EB was found out to be genetic, I suppose it was a little more acceptable, perhaps slightly palatable, to think people could believe it would be cured with food. Dr. Kozak believed this wholeheartedly back in 1982 (read the article published in People Magazine here), he even had his own Klinik in Germany, where Lillian Sparks took her son Byron to (she described the whole treatment in her book “Parents Cry Too“), where every three to five hours (even in the middle of the night), nurses would wash patients’ skin with alcohol, then apply lotions and bandages and fed patients food with no preservatives, drink mineral water and took multiple vitamins. In her book, Lillian stated pretty much all Byron ate was carrot soup. Did this cure or either improve his EB? It couldn’t have and it didn’t. Food cannot correct genes. They may help heal, but cannot prevent blisters. To that I must say, any EB patient that is confined to a bed and has no life to speak of for 11 weeks will improve, end of story.

Thank You for listening and understanding.

Mom to 3 boys, 1 in heaven, 2 on earth. My first son Alex (whose demise is most likely EB related) was stillborn at full term. After a miscarriage, I had my second son Nicky, who has the Recessive Dystrophic form of Epidermolysis Bullosa. My youngest son, Connor, is 100% healthy, and I never, ever take it for granted. I am an author, photographer, graphic artist, webmaster, blogger and more.

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My take-away from the Debra’s PCC in Orlando – Part 5

Here is more information about several talks from the conference from July 31, 2012:

Anesthesia for your child with Epidermolysis Bullosa & Interdisciplinary EB care

These two talks, which I will bunch up together simply because I don’t remember a whole lot from them separately, were done by Dr. Eric Wittkugel & Dr. Anne Lucky, both from Cincinnati’s Children Hospital. The only two notes I wrote down were to, one, look up ‘Mepitac‘, which is a tape that can be used for EB patients (does it work for RDEB? They say it does, I am always a little weary of it, but I am willing to try it) and, two, the duration of anesthesia is not a problem, there is no risk in case a patient needs to be ‘under’ longer for multiple procedures.

Other than that, I will let the slides do the talking, hopefully they will help someone. Remember to click on the slides to view a bigger version…

All of these slides are from the Anesthesia presentation, I found THIS PDF document online from Stanford with more info about Anesthesia that relates to EB.

Here is the videos of these presentations courtesy of Debra:

Dr. Lucky’s presentation is available ONLINE at this link HERE! (you will need a Google account to view, but it’s FREE) Basically, Interdisciplinary EB care means having everyone that is an expert of EB, from the dermatologist to the GI, hand surgeons and more under one roof.

Following these two talks there was a Physical and Occupational panel Q&A.  One question that comes to mind was from a therapist asking if she could use coban with the finger wrapping between web spaces and them stating coban was just too harsh on RDEB skin (which I agree-when Coban touches Nicky’s skin it’s blister city, so I only use it on top of bandages). My two questions were if there were any oils they could recommend to soften scar tissue and what exercises they could recommend to improve bone density since Nicky can hardly walk. The first question about the oil, they did not have any recommendations, except for just massaging the hand, which is hard to do when it’s full of wounds. As per the bone density question, she stated that at least standing is important, so Nicky has been standing as much as he can since I told him, bless his heart! Another suggestion I got is to get a vibration platform, that it could be rented etc. By talking to other parents and doing a little web search , I found out that Coconut Oil, Vitamin E, and I am trying this Argan Oil, all soften scar tissue. I soak his hand in these oils before rewrapping them.

Here is the video of the presentation, courtesy of Debra of America:

Here is the presentation for OT & PT at the 2010 Conference:

Medical and Integrative Approaches to the Management of Pain and Itch in EB

This talk was probably one of the most important of the entire conference. It was given by Dr. John Saroyan & Dr. Traci Stein. I mostly took photos of the slides because they were SO IMPORTANT and I did not want to miss a beat.

This talked about the various drugs that can be used depending of what form of EB, drugs used to subside itching and the issues with constipation.
So, once again, I will let the slides do the talking. Remember to click on the slides to view a bigger version…

If anyone has any info I might have missed, please leave a comment below (in the Facebook comment section).  THANK YOU!

Update August 15th, 2012: I found more notes about this latest talk about Pain Management that I think are worth sharing. The Doctor spoke about different ways to reduce pain, such as trance inducing activities, relaxation techniques, pleasant scents… for more information she stated to contact her at her website: http://www.drtracistein.com/

Here is the video of the presentation, courtesy of Debra:

GO TO PART 6 –>>

Links to — > Part 1Part 2 – Part 3 – Part 4

Mom to 3 boys, 1 in heaven, 2 on earth. My first son Alex (whose demise is most likely EB related) was stillborn at full term. After a miscarriage, I had my second son Nicky, who has the Recessive Dystrophic form of Epidermolysis Bullosa. My youngest son, Connor, is 100% healthy, and I never, ever take it for granted. I am an author, photographer, graphic artist, webmaster, blogger and more.

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Nicky’s Wound Pics Part 2

This is part 2 of a series of posts I will make with wound photos that Facebook does not allow me to post. Post #1 is here.
I took some photos of Nicky’s wounds to be shared at the Hydrotherapy yesterday, June 18, 2012.  I just updated Nicky’s journal about how he is currently doing, it can be viewed here –>
http://www.caringbridge.org/visit/nickyz/journal

I picked 8 photos of his limbs, the knees/wrists are infected with Pseudomonas which we are dealing with. Overall we are pleased, he’s doing good with the combination products I use on his wounds and the heavy usage of Webril to prevent him from hurting himself by scratching, and create a padding that helps him do things he would not otherwise not being able to do… you know, like walking.

Nicky's Left Elbow. This elbow has significantly improved since last year thanks to the Polymem, it was even biopsied at Stanford.

Left Wrist has also significantly improved with the Polymem.

Right Knee and top

Left Knee

Left Knee

Right Knee

Right Hand and wrist

Right wrist

... and he STILL smiles at me despite it all. <3 <3 <3

Mom to 3 boys, 1 in heaven, 2 on earth. My first son Alex (whose demise is most likely EB related) was stillborn at full term. After a miscarriage, I had my second son Nicky, who has the Recessive Dystrophic form of Epidermolysis Bullosa. My youngest son, Connor, is 100% healthy, and I never, ever take it for granted. I am an author, photographer, graphic artist, webmaster, blogger and more.

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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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What is EB?

By Emily Spurrier
From her Blog: Dys-Located

This is the first in a blog series on Epidermolysis Bullosa (EB) as part of EB Awareness Week (October 25-31).

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Some would describe EB as horrific. Some use words like “Painful”, “devastating”, “horrible”, “dreadful” or “insurmountable”. In reality, for several who do not know what EB is, there may simply be no words to describe it. EB is not like some disorders that are noticed later in life and then becomes progressively worse. EB is not just something that can be fixed with surgery. EB starts inside of the womb with painful blisters. The pain cannot be eased. Nine times out of ten, the mother is completely unaware that this is happening to their child. It only gets worse from there.

To put it simply, EB is a rare genetic condition affecting an estimated 13,000 people in the United States. For the most part children are impacted, but the disorder is lifelong. In some forms, life expectancy is only a few months. In others, left expectancy is about 30. The less-known cases have a normal life expectancy. Though there are treatments for EB, there is no official cure for EB.  By cure, I mean never having any more symptoms of the disorder and ensuring that future generations are never to be impacted by this disorder again.

In all cases, though, friction on the skin, whether it be pushing a grocery cart, walking or even a simple hug, can cause the skin to erupt in painful blisters. In some instances, the skin completely comes off. In almost all cases, EB is not detected until birth. Just delivery can remove the skin from a child with EB. Then, there’s the wiping of the child, diapering, the identification bracelets, handling, hugging, bundling…  all these things that happen in the first five minutes of an infant’s life can cause serious damage to a child with EB.

Epidermolysis Bullosa is fatal. The skin must be bandaged constantly to prevent infection and to protect from further pain. Imagine the pain you would feel if you scraped a small section of skin off of your leg. Now, imagine how that would feel if that scrape were your entire leg. Now, imagine what that would be like if your leg just wouldn’t heal and were constantly scraped open over and over again. This is the life of a child with EB.

When the skin of a child with EB tries to heal, sometimes, the healing is ‘overdone’ and new skin forms between fingers, causing then to fuse together. Healing wounds on the mouth causes the mouth opening to become smaller. Sometimes, eyes grow shut and sealed.  Often, the esophagus strictures.

In a perpetual state of healing and re-injuring, the body tends to become anemic and sometimes starts to shut down. Sometimes, the pain is just intolerable. EB then potentially becomes terminal.

EB takes not only an emotional toll on every family impacted, but also a financial one. Items necessary for lifetime survival are sometimes not covered by average health insurance. Expenses then have to come out of pocket or other non-profit charities.

I’ve lost count of how many people I have personally known who have lost their battle with EB. Many I’ve cried hours over. Some I just bow my head, knowing there is no more pain for them.

Each October, the last week of the month is known as International EB Awareness Week and became officially so in 2006. Over the next few days, I’ll give links about EB and I will also tell a deeply personal story about how EB entered into my own life and still impacts it today.

Stay tuned.

Emily was born in Southwestern Louisiana and has moved over 20 times in her life through nine different states. Most of her life was spent in the Twin Cities of Minnesota, where she met her husband and had her only child. Both she and her husband are also only children.

Emily was born with EBS-DM (EB Simplex, Downling Meara), and was in a wheelchair as a result until she was 18. She started improving at around 15, and this is why Kathryn is an only child.

She graduated from Stillwater (MN) High School in 1992 and from the University of Wisconsin in 1997 with a BS in Journalism. Three years later, she met her husband, George, and they married in 2002. Their daughter, Kathryn, was born early in 2004.

She relocated with her family back to Arkansas in 2005 after being away for 30 years. She currently works for the Arkansas Democrat Gazette as a Web Clerk and lives in North Little Rock.

When not taking care of her daughter, cooking, working, cleaning house, sewing, gardening, kn

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Fecal Hoarding and Constipation

Written by an Anonymous RDEB Patient

I have had these issues since birth and have tried a myriad of medications that have been prescribed or suggested by prior physicians. The list includes mineral oil, senna products (liquid and herbal tea) ex-lax, milk of magnesia, dulcolax, docusate sodium, Metamucil, Miralax, Benefiber and many others that I don’t remember the names of. Ultimately, none of them worked in a manner that was consistent, or the side effects were to severe so outweighed the benefits, or they didn’t help at all.

For anyone who may not understand why constipation and fecal hoarding is such a prevalent problem for EB patients it is because our skin does not have the same elasticity that others do. Therefore, during a bowel movement, the skin of the rectum/anal area is stretched which causes blistering, tearing, splitting, shearing and detaching of many layers of skin. This is EXCRUCIATINGLY painful.

Generally, what happens is the fear and anxiety of having a bowel movement causes a behavioral habit called fecal hoarding which is when a patient deliberately avoids going to the bathroom when the body is trying to naturally expel the matter in an attempt to avoid the pain. What happens then is the matter becomes impacted and the intestines become stretched as more and more matter becomes impacted, thereby causing the size of the feces to become too large to be expelled naturally, as the skin simply would not be able to accommodate its passing. Because of the impaction, the matter becomes very hard and gas builds up in the body, causing painful cramping, as the gas cannot be released from the body, as it has no room to move past the matter.

At this point, the only thing that is going to alleviate the impaction is a series of laxatives, stool softeners and enemas. This is a painful and humiliating process that can sometimes take a few days to complete. The best way to keep this from happening is to make sure that you are ingesting enough fiber and water to allow the fecal matter to be soft so there is less pain when having a bowel movement.

What can also happen is some of the matter can become fluid and is able to slip past the harder matter so there are small bowel movements that are generally very messy but do help relieve some of the painful pressure of the matter that is bearing down on the inside of the intestines and rectum. This can give a false sense of security as one may think that they are having a bowel movement regularly; however, the case may be that only a small amount is being released during these loose movements.

It is a trial and error process of trying different medications or fiber supplements. Either they don’t help, or they help a little but not enough or you spend all your time running back and forth to the bathroom, an sometimes not quite making it there in time, which is humiliating for a person of any age.

When I was in my late 20’s I decided to try something different as I was frustrated by the lack of control I had over my bowel’s and it angered me that this skin disorder was making such a simple action so complicated. I decided to try a more natural approach of simply increasing my fiber and liquid intake. I began eating prunes and drinking more water every day, and it worked! After a day or two, I began having regular bowel movements that were very soft, and while it was still painful, it was not as painful or traumatic as I had been enduring.

After a few weeks, I got tired of prunes so I started looking for other foods or products that would have the same effect. The other benefit of eating foods high in fiber was that there were no side effects like when I was taking the medications.

Please remember that I am simply relaying information that helped ME. I strongly recommend discussing any diet change with your or your child’s doctor before making any serious changes. Also, continue taking medications until discussing any changes with the prescribing physician.

Below is a list of high fiber fruits and veggies and snacks

Please remember that FRESH fruits and veggies have much more fiber, vitamins and minerals than canned.

Prunes  – Peaches  – Cantaloupe  – Watermelon  – All green veggies
– Plums – Nectarines – Grapes – Grapefruit – Honey Dew Melon –
Apricots – Apples – Pears – Oranges – Mandarin – Oranges

  1. Salad (darker lettuce and baby spinach has more fiber, vitamins and minerals than iceberg lettuce)
  2. Pretty much ALL forms of BEANS are high in fiber (they are effective although they do create more gas)
  3. Whole wheat bread (Brownberry whole wheat has 3 grams per slice and is the best tasting whole wheat I’ve found…It has a sweet taste and is yummy : )
  4. Weight watcher brand muffins and dessert cakes (generally found in the bread aisle)
  5. Slim fast brand muffin bars
  6. Polaner all fruit with added fiber
  7. Shredded wheat cereals (Fiber One brand has a shredded wheat cereal with a higher fiber content than regular brands)
  8. Oatmeal (several brands have many flavors with more fiber or added fiber)
  9. Fiber One pop tarts
  10. Fiber One brownies
  11. Boost Plus supplement shakes

For infants and those that are not crawling or walking, it is helpful to massage the abdomen as well as pushing the legs up towards the abdomen area (as if riding a bicycle). This helps move the fecal matter through the intestines. If the matter is firm or hard it can hurt as it moves through the intestines (cramping) as the tissue is sensitive. It best to limit milk intake as it does not provide as much hydration as water or juices. You can water milk down or add ice to it and add a touch of sweetner to make it taste better. I recommend using stevia or Agave Nectar sweeteners as they are all natural, do not raise blood sugar levels or cause chemical reactions (mood swings, hyperactivity etc…)

It is imperative that you increase your water intake (fluid) if you increase your fiber intake as the body pulls the water into the intestines to allow the fecal matter to soften. If you don’t drink enough water then your body is not hydrated enough to complete this process and the matter will become harder.

Below is a photo of the rectum of an RDEB patient. It depicts the trauma caused to the rectal area by the stretching of the skin from passing fecal matter. There is a permanent tear in the rectal wall from repeated ripping of the tissue during bowel movements.

 

Nicky’s Wound Pics

I struggled a lot to make this, the first post on this site particularly for Nicky’s wounds. In the past I’ve been victimized by many to do so, even from EB patients and other parents, Facebook nearly deleted my account for posting photos (you can read about that HERE), *but* I always feel as if we’re “sanitizing” EB for mass consumption, particularly RDEB since its wounds are rather deep and nasty, and showing photos of Nicky all bandaged up I never felt served the purpose it needed to serve, SHOWING the reality of EB.

So, from time to time, I will start posting wound pics as I take them. More wound pics for the Recessive Dystrophic form can be seen HERE

I picked three photographs that I took just the other day. One shows the ankle, one the top of his foot and one a knee. It’s important for me to say a few things about these pictures:
1. Nicky is perfectly OK and has *always been* perfectly OK with me posting these. Go ahead, ask him!
2. His knee and ankle are his worse spots by far. His ankle was damaged at birth from those hospital bracelets and while it always healed up to the time he was 5 or 6, it’s been several years now that no matter what we do and what products we use, it may heal partly but it will blister up again.

NIcky's ankle

The top of his foot-hasn't healed in ages. We use Polymem on it now and it seems to help a lot!

Nicky's knee

I also wanted to say that even though Nicky’s wounds are not much worse per se than when he was smaller, there are more of them and take much longer to heal or they do not heal at all. They are also much more painful to him, whose every step is an agony, who cannot walk straight because his knees are too painful to straighten. Lately his ankle has made it so it’s even MORE painful to flatten his feet. The toll having EB has taken after 15 years it’s something I truly cannot describe.

Next time I will post photos of his arms/hands. Thank you for keeping your comments kind. 🙂

Mom to 3 boys, 1 in heaven, 2 on earth. My first son Alex (whose demise is most likely EB related) was stillborn at full term. After a miscarriage, I had my second son Nicky, who has the Recessive Dystrophic form of Epidermolysis Bullosa. My youngest son, Connor, is 100% healthy, and I never, ever take it for granted. I am an author, photographer, graphic artist, webmaster, blogger and more.

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Hand Wrapping Instructions

By Lorraine Spaulding

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:

http://dermatology.stanford.edu/gsdc/eb_clinic/eb-videos.html

All illustrations are of the left hand.

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.

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