For the past few years now I’ve been mixings things up to put on Nicky’s wounds and I do believe I have a good mixture of ingredients now that has helped his wounds in ways no other single item has before.
It all got started a couple of years ago when a friend suggested “Medihoney“. Since another EB mom I love had great success with honey for healing wounds, I was eager to try it. But it was too sticky. It was a disaster, Nicky hated it. I stopped using it while I was trying different things, always meaning to find a way to use it. Another acquaintance then had me try cannabis mixed with coconut oil and I saw some improvement, but the consistency was a disaster. This oil was running everywhere, it was hard to apply. I then tried to mix the cannabis with healing creams instead and it worked much, much better. I then started adding stuff to it… including Medihoney and that’s when I started seeing things change and a lightbulb went off in my head wondering what other marvels I could add that could speed up the healing or allow the healing altogether.
The following ingredient list I would assume would work great not only on RDEB patients with non-healing wounds, but on anyone that has deep wounds, such as diabetic ulcers, incisions and the like.
Mind you, this list is ever changing as I try and use new things (I am adding below other items I am thinking about adding to it), but I wanted to share what I am using right now.
- Any “healing cream” works great, but try to find cream that includes “allantonin” in their ingredients. Allantonin was one of the main ingredients of the now-defunct “Alwyn” cream so many EB patients loved. There is a trial right now of a cream that has a lot of allantonin in it which is producing great results for EB patients; while we wait for it to become available, all things failed, Jergens has a cream called “Ultra Healing” which has the allantonin in it. The only one I found on the market with it. They have it at Target as well in small bottles.
If, of course, you have a cream that works wonderful for you already, use that instead.
For the Concoction, use two to four heaping tablespoons depending on the consistency you would like the final product to have. - Diaper Rash Cream with 40% oxide always worked great in healing stubborn wounds. The brand does not matter, the important element is the 40% oxide. I get mine at Target, the up & up brand is definitely cheaper than the Desitin.
For the Concoction, use two heaping tablespoons. - A tube of Medihoney. I get mine from the supplier (McKesson).
- I just recently started adding Shea Moisture Baby Eczema Therapy with Frankincense & Myrrh. I liked the fact that it has Chamomile for its anti-inflammatory properties & Shea Butter. I also read that the Frankincense in it reduces pain and inflammation, boosts immunity, and even fights cancer. The Myrr also has anti-cancer, anti-bacterial and anti-fungal properties. I get mine at Target and there is usually a coupon for it in the Sunday paper too.
For the Concoction I use about 2oz. It makes the concoction smell good too. Of note, I usually have to put the jar in the microwave for a few seconds to make the product softer so it can be mixed in. - About 10 drops (or more) of Emu Oil. I do get mine from Amazon. A bottle will last a VERY long time!! Try to get the most pure/organic brand you can get. Emu oil has anti-inflammatory properties and reduces scars.
- About 10 drops (or more) of Argan Oil. I also get this from Amazon. Again, a bottle will last you a VERY long time! The most organic and pure the better. Argan Oil fights infections and inflammations.
- About 10 drops (or more) of Gotu Kola. Once again, Amazon is where I go. I heard about this oil for healing wounds from watching the Dr. Oz show a while back and what I found out is that it reduces scarring, it’s anti-inflammatory and is also useful in repairing skin and connective tissues.
- Cannabis? Yes, I add liquid Cannabis if I have any on hand. The more the better, but I usually put 20 drops or so.
I mix all of the above together and then apply it on Nicky’s wound as if I was putting frosting on a cake. Nicky loves it. He says it feels “good”. I cover it with Xeroform and then add some foam dressing of some sort to absorb all the oozing of the wound as it heals.
In the past I added a whole tube of Keragel to the mix, but since I did not see any improvement I discontinued. If Keragel works for you, by all means, add it. This of course goes for anything other product that you know works for you, if it works, use it.
Another oil I use is Tea Tree Oil but I do not add it to the cream because it stings. Instead, I spray it on the Xeroform that goes over the cream so he does not feel the sting. Tea Tree Oil is really amazing to treat infections.
Other things I am looking into and will most likely add in the future are Sea Cucumber Liquid Extract (for his anti-cancer, wound healing properties) and Aloe Vera, but not the cream, I am specifically looking to add the concentrated oil. I know Aloe Vera is great in wound-healing but we never had much success with creams per se. Another oil I am looking into is Gentian Violet since the Dermatologist stated she had just read a paper about it’s use with EB. From what I can gather so far it seems to be another great anti-fungal, anti-inflammatory product.
Another product that I am researching is Hyaluronic Acid Serum. The jury is out on this one though, it looks like it may work better on my face than on Nicky’s wounds, lol.
If you have any suggestions in other oils or products (most especially any that are anti-cancer!) that worked well for chronic wounds, leave me a comment!!!
Sending much love… hope this post helps someone.
Here’s a video I recorded a while back where I talk about my concoction and other things I use for Nicky’s care.
Love & Light,
