Healing Nicky’s Wounds that he gets from his diagnosis has always been my top priority. Preventing them to begin with was always #2.
I must admit that when Nicky was little, it was “fairly” easy to keep his wounds healed and his skin intact compared to now. I even have a video of Nicky during a bandage change when he was 3 years old, basically naked after a bath, with no wounds. I’ve never been able to repeat my success from back then.
The issue is the diagnosis in itself, as RDEB (Recessive Dystrophic Epidermolysis Bullosa) is considered a degenerative condition, even though the disorder does not get ‘worse’ per se. What gets worse is the skin after repeated injury. The more it gets injured, the more fragile it becomes.
One of the Doctors that takes care of Nicky told me not too long ago how he thought my bandaging really works, as, he said, Nicky has less of a wound mass as many RDEB patients he sees, even as Nicky is older and has a more severe form. This does not take away the fact that he has a nasty skin disorder and that he has been living with it for 23 years and some areas of his body are just so far gone there are times that I wonder if I’ll ever see them healed.
We’ve tried it all to heal these stubborn wounds in the past two decades. Food does nothing BTW. Zero. It just keeps him fed. Supplements basically work on keeping Nicky healthy overall, but do not heal anything faster. Essential Oils… hmmm… perhaps “something”, it may make sure his wounds heal a little faster, with a little less inflamation, keep it a little more infection-free but not a whole lot. We have to remember that RDEB is genetic. Nicky’s body does not make the collagen type VII at all and nothing I can give him, orally or topically can get his body to make it. Over the years we tried new strategies out to wazoo. Tea baths? You know it. Miracle waters? Yes! I know you’re laughing, but it’s overwhelming.
There has been a lot of trial and error. Failed attempts are the norm. Defeat is a reality. Yet determination and love persist. I am a mom. I won’t stop. That is just what we do. In life there are days full of happiness and full of anger, there are days full of rain and full of smiles… there are days full of tears and there are days full of love, and the good stuff is what give us the courage to move ahead for all the rest of the days…
We tried it all because for Nicky, healing these wounds is of monumental importance, and not only for quality of life and to diminish the pain he feels every day; open and stubborn wounds lead to skin cancer or infections that can cause sepsis and are both deadly.
One of the things that is available now that wasn’t available 23 years ago is Marijuana/Cannabis/CBD, whatever you want to call it. It was all illegal and not available anywhere. By the time it became legal in Colorado, the first state in the US to do it, was already 2014. Nicky was 18 and I truly never heard of it working on wounds until I had a sweet lady and guy talking me into trying it and I thought… well, we have nothing to lose at this point. Why not? Yes, it was all illegal and we didn’t care. We had to do it all very sneakily. Nicky liked it… and HATED IT. HATED IT!!! He liked how it made his pain go away, but the way it made him feel, even with super-low THC was something he could not get past. So we started using it on wounds instead, and that’s where the magic started. It really worked well. Not a magical 24 hour healing thing, but we could see, for the first time in years, his left knee heal completely in a matter of weeks. We stopped using it in 2016 when we started being part of a cream trial at Stanford (which worked just as well!) but by the time the trial ended in late 2018 (and the cream discontinued!!) I had other things in my mind than restarting the CBD oil again. Nicky was in and out of the hospital for 6 months and his wounds were not worse so I didn’t even think about it. That is… until last week, when his right knee was beyond horrible. That’s when I dug out some of the CBD bottles I had in a drawer and poured a whole bottle in the cream I use on his wounds (a concoction of healing cream, medihoney, argan oil, zinc oxide and other good stuff) …and last night as we changed that same leg we were amazed. WOW. It made a difference. Not huge, mind you, but it was noticeable. It was a CBD oil we had bought from GreenRoads a while back and now we are believers again.
The moment we discussed our plight on Nicky’s Page on Facebook the support came pouring in. I was amazed and humbled. Sometimes, you simply don’t understand the love that surrounds you, but the past few days I let it engulf me. I received so many suggestions on CBD creams and ointments and CBD websites and even donations to purchase these very expensive products and I couldn’t be more thankful.
As soon as I try a few (I just received this morning an ointment from Theramu and a cream from CBDMD and are eager to try them on Nicky’s wounds!) I will report on our findings and how they worked on Nicky.
In the meantime, I invite everyone that is even mildly interested in EB or cares about Nicky, to read his story. The kindle version of Butterfly Child is only $8.99 and the cheapest version of the paperback is available at the publisher for $14.97. Taking care of Nicky is expensive and I am unable to work because I have to take care of him, so by purchasing the book you are also supporting our family.
Defeat isn’t an option. Hope abounds. Love will triumph.
Love & Light,