For those affected by EB Simplex, please check out the Epidermolysis Bullosa Simplex Registry
©Garrett's House 2021
March 22, 2014
February 23, 2014
My ankle wound
I developed a wound on my ankle last May that started off the size of a dime, or about 1.5cm x 1.5cm.
It was very deep and not a typical EB wound. It turned out to be a venous ulcer. I had a lot of biofilm and bacteria on it that no only prevented it from healing, it was causing it to get bigger. By Thanksgiving I had three ulcers that were rapidly becoming one.
Despite being on oral antibiotics for months, doing bleach and vinegar soaks the infection continued to worsen. I tried every wound care product out there; it would not heal. I discovered in the process I am allergic to silver, Medihoney, Hibiclens and a new product called Endoform:( the Endoform was pretty much my last hope.
By Christmas the wound was 6cm x 4+cm:-( very infected and very, very painful:(
So I stopped the antibiotics, soaks, specialty ointments and dressings.
I made up a homemade ointment from a recipe I got from another EB parent
one 14 oz tub of Aquaphor
60cc's of melted coconut oil,
7 grams a powder called lactoferrin
7 grams of FINELY ground Xylitol,
30cc's of tea tree oil.
30 DROPS of lavender oil
I mix all together in a empty container. The Aquaphor is the base, the Lactoferrin and Xylitol are essentially for removing biofilm. And the oils reduce inflammation and help treat infections.
I also make a mixture of 30cc coconut oil, 10cc tea tree oil and 5 DROPS lavender oil.
I wash the wound with plain soap and water. Apply the oil mixture to the skin around the wound. I then apply anti fungal ointment to the edges of the wound. I then apply the home made ointment to mepilex transfer, cover with mepilex lite or restore lite foam and then secure with tubifast. I tried the thicker dressing, the drainage still soaked thru and they didn't allow the wound to breathe and caused more itching.
This kind of ulcer drains A LOT and the drainage is toxic and painful. I have to change the dressing as soon as I see drainage on the outside of the dressing. Which for me is 5-6 times a day at least. I know that is not practical for most with EB but it is working for me.
I have also changed my diet. I now drink a protein shake daily. I also reduced my sugar intake and eliminated caffeine and alcohol. Those three things were causing significant inflammation to my wound.
So between the changes in wound care and diet, my wound went from 6cm x 4cm to 4cm x 2.5cm within a month!!! I still have a long ways to go before it is totally healed but this is a huge difference.
I will post pictures at the bottom for anyone interested but warning they are graphic!
I am not looking for any advice this time:-) I am posting this in the hope it might help others and to update those who have been wondering how my wound is doing.
PICTURES for those interested!! WARNING they are GRAPHIC!!
It was very deep and not a typical EB wound. It turned out to be a venous ulcer. I had a lot of biofilm and bacteria on it that no only prevented it from healing, it was causing it to get bigger. By Thanksgiving I had three ulcers that were rapidly becoming one.
Despite being on oral antibiotics for months, doing bleach and vinegar soaks the infection continued to worsen. I tried every wound care product out there; it would not heal. I discovered in the process I am allergic to silver, Medihoney, Hibiclens and a new product called Endoform:( the Endoform was pretty much my last hope.
By Christmas the wound was 6cm x 4+cm:-( very infected and very, very painful:(
So I stopped the antibiotics, soaks, specialty ointments and dressings.
I made up a homemade ointment from a recipe I got from another EB parent
one 14 oz tub of Aquaphor
60cc's of melted coconut oil,
7 grams a powder called lactoferrin
7 grams of FINELY ground Xylitol,
30cc's of tea tree oil.
30 DROPS of lavender oil
I mix all together in a empty container. The Aquaphor is the base, the Lactoferrin and Xylitol are essentially for removing biofilm. And the oils reduce inflammation and help treat infections.
I also make a mixture of 30cc coconut oil, 10cc tea tree oil and 5 DROPS lavender oil.
I wash the wound with plain soap and water. Apply the oil mixture to the skin around the wound. I then apply anti fungal ointment to the edges of the wound. I then apply the home made ointment to mepilex transfer, cover with mepilex lite or restore lite foam and then secure with tubifast. I tried the thicker dressing, the drainage still soaked thru and they didn't allow the wound to breathe and caused more itching.
This kind of ulcer drains A LOT and the drainage is toxic and painful. I have to change the dressing as soon as I see drainage on the outside of the dressing. Which for me is 5-6 times a day at least. I know that is not practical for most with EB but it is working for me.
I have also changed my diet. I now drink a protein shake daily. I also reduced my sugar intake and eliminated caffeine and alcohol. Those three things were causing significant inflammation to my wound.
So between the changes in wound care and diet, my wound went from 6cm x 4cm to 4cm x 2.5cm within a month!!! I still have a long ways to go before it is totally healed but this is a huge difference.
I will post pictures at the bottom for anyone interested but warning they are graphic!
I am not looking for any advice this time:-) I am posting this in the hope it might help others and to update those who have been wondering how my wound is doing.
PICTURES for those interested!! WARNING they are GRAPHIC!!
original wound (May 2013)
July 2013
August 2013
Thanksgiving 2013
Early December 2013
Christmas 2013
January 2014
February 2014
©Garrett's House 2021
October 31, 2013
EB Awareness Week 2013- day 5 & 6
I didn't have time to blog yesterday because I was busy working on my final blog post. And I wasn't sure I would get time today either but while doing the dishes my thoughts started to wonder and decided to write about what its like as an adult with EB and be an EB parent. And thought my intent is NOT to offended anyone with my writing, I know it's very likely that some or many maybe be offended by this post, so if you are an EB parent and offend easily, it might be best not to read this:-)
With the onset of National EB Awareness Week many EB parents have shared their child's birth story and how shocking and heartbreaking it was that their child was born with EB. While I do have three stories of my own, they are not very similar to the many I have read this week. There was no shock that my child was born with EB; we knew it was a possibility. I was not horrified on how much skin my child was missing; I already knew what EB looked like. While I was saddened they had inherited EB with from me and I knew things wouldn't be easy, I didn't think even for a second their life or mine for that matter was over because they were born with EB.
As an adult with EB, I do understand how painful baths are; As an EB parent I also know how necessary they are and do what I can to make it fun and as painless as possible.
As an adult with EB I understand how painful wound care is emotionally and physically and sometimes there is no amount of pain medicine to take away the pain; As an EB parent I try to make it as comfortable as possible and let the child have some control...even if that means it takes hours to get it all done.
As an adult with EB I understand how damaging itching is to the skin but i also know its like an addiction and very difficult to stop; As an EB parent I try various ways to relieves the itching but also know my child is going to itch some days to the point of bleeding and there isn't anything I can so to stop it.
As an adult with EB I understand how humiliating is it to spend hours at the doctors office having even inch of my skin document on film or worse sitting in just my underwear while dozen of doctors and medical student parade thru the exam room to see what EB looks like; As a EB parent I do not allow my child to be put on display at the doctors office or hospital. We only do what is necessary to stay healthy and while I am all for educating and teaching it can be done with exploiting my child.
As an adult with EB I know what its like to be turned into guinea pig and subjected to "experimental" treatments involving vitamin supplements medication or other procedures all in the name of science. As an EB parents I will wait until my child are old enough to decide from themselves if they want to participate in such things.
As an adult with EB while I was not taught to hide their EB (though some with EB were) it also wasn't something openly shared either. Maybe it was because it was a different day and age and the technology available today wasn't available then. As an EB parent my kids know they have EB; they know other kids their age with EB. They are encourage to tell people about it if they want to but I don't force them too. I suggest ways they can deal with questions from strangers but also tell them its ok to tell people its none of their business.
As an adult with EB we did not have the internet or social media when I was growing up. My parents did not post pictures of my wounds for the world to see or express how much they hated EB for their friends, family, co-workers and eventually for me to read when I got my own Facebook account; As an EB parent i never try to hide the fact that my kids have EB and I do post things and pictures about my kids' EB but I am very cautious about what I say and about the pictures I post. I try think about how they would feel someday if they were to read something I posted before I post it.
As an adult with EB I know how hard it is to only have few friends and be made fun of at school. As an EB parent I teach my children that in order to have friends you have to be a good friend. If people really want to be your friend, they will care less you have EB and if they do care or make fun of you for it, then they don't deserve to be your friend. And while there will be those people who will tease and make fun of you, you will also find some great friends just like I did!
With the onset of National EB Awareness Week many EB parents have shared their child's birth story and how shocking and heartbreaking it was that their child was born with EB. While I do have three stories of my own, they are not very similar to the many I have read this week. There was no shock that my child was born with EB; we knew it was a possibility. I was not horrified on how much skin my child was missing; I already knew what EB looked like. While I was saddened they had inherited EB with from me and I knew things wouldn't be easy, I didn't think even for a second their life or mine for that matter was over because they were born with EB.
As an adult with EB, I do understand how painful baths are; As an EB parent I also know how necessary they are and do what I can to make it fun and as painless as possible.
As an adult with EB I understand how painful wound care is emotionally and physically and sometimes there is no amount of pain medicine to take away the pain; As an EB parent I try to make it as comfortable as possible and let the child have some control...even if that means it takes hours to get it all done.
As an adult with EB I understand how damaging itching is to the skin but i also know its like an addiction and very difficult to stop; As an EB parent I try various ways to relieves the itching but also know my child is going to itch some days to the point of bleeding and there isn't anything I can so to stop it.
As an adult with EB I understand how humiliating is it to spend hours at the doctors office having even inch of my skin document on film or worse sitting in just my underwear while dozen of doctors and medical student parade thru the exam room to see what EB looks like; As a EB parent I do not allow my child to be put on display at the doctors office or hospital. We only do what is necessary to stay healthy and while I am all for educating and teaching it can be done with exploiting my child.
As an adult with EB I know what its like to be turned into guinea pig and subjected to "experimental" treatments involving vitamin supplements medication or other procedures all in the name of science. As an EB parents I will wait until my child are old enough to decide from themselves if they want to participate in such things.
As an adult with EB while I was not taught to hide their EB (though some with EB were) it also wasn't something openly shared either. Maybe it was because it was a different day and age and the technology available today wasn't available then. As an EB parent my kids know they have EB; they know other kids their age with EB. They are encourage to tell people about it if they want to but I don't force them too. I suggest ways they can deal with questions from strangers but also tell them its ok to tell people its none of their business.
As an adult with EB we did not have the internet or social media when I was growing up. My parents did not post pictures of my wounds for the world to see or express how much they hated EB for their friends, family, co-workers and eventually for me to read when I got my own Facebook account; As an EB parent i never try to hide the fact that my kids have EB and I do post things and pictures about my kids' EB but I am very cautious about what I say and about the pictures I post. I try think about how they would feel someday if they were to read something I posted before I post it.
As an adult with EB I know how hard it is to only have few friends and be made fun of at school. As an EB parent I teach my children that in order to have friends you have to be a good friend. If people really want to be your friend, they will care less you have EB and if they do care or make fun of you for it, then they don't deserve to be your friend. And while there will be those people who will tease and make fun of you, you will also find some great friends just like I did!
©Garrett's House 2021
EB Awareness Week 2013: Remembering the EB Angels
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| Free picture slideshow personalized with Smilebox | ©Garrett's House 2021 |
October 28, 2013
EB Awareness Week 2013- day 4
Today I will be sharing some pictures that show the reality of having EB and being a toddler :-)
These are Joey's feet. All the wounds you see are self inflicted from him just itching his feet:(
Even with oral and topical medication to help reduce the itching sometimes there is nothing we can do. And if you have ever tried to reason with a 2 year old you know how hard that is:-)
WARNING graphic pictures below
These are Joey's feet. All the wounds you see are self inflicted from him just itching his feet:(
Even with oral and topical medication to help reduce the itching sometimes there is nothing we can do. And if you have ever tried to reason with a 2 year old you know how hard that is:-)
WARNING graphic pictures below
©Garrett's House 2021
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