On our first trip to Stanford, back in August 1997, Dr. McGuire told us something that would forever be etched in my mind. He told us that the #1 enemy and the #1 reason for the demise for children with RDEB was infections. To say he scared me to death in one sentence it’s the understatement of the year. Not only he confirmed his RDEB diagnosis, but also mentioned the word ‘death’ and ‘infections’ in it. Fantastic.
This was about 17.5 years ago, at a time where the only information I could get about RDEB was from books, and they were vague. Children with RDEB were (and still are!) rare, and any Doctor I saw back then treated Nicky as if he was the long lost Unicorn, rumored to exist, but nobody had actually seen it. But Stanford was seeing them, just one day per month at that, and these Doctors knew what they were talking about. RDEB was a death sentence, that much was true, but on the same day we got to meet a young man whose RDEB went away during puberty. As I shook the hand of this now-healthy 19 year old man, who still had the scars to prove his diagnosis, I knew I had to have hope. Hope was gone and came back in one single day.
Even so, it seemed as if the only answer I got from them about getting rid of infections was ‘antibiotics’. It took me years to figure out to get rid of infections without using antibiotics, and while I am not exactly one to pat oneself in the back, I know I must be doing something right if we are sitting here, these many years later, and Nicky never had a serious infection, and in the past decade he’s been on oral antibiotics a handful of times. IV antibiotics never.
Antibiotics scared me to death. If overused they stop working, so I knew I had to find alternative methods to treat the infections. When Nicky was a baby our only recourse was to cover the wounds with vaseline gauze and put rolled gauze over them. That’s how the nurse showed us to do it. Right away though, I felt this method didn’t work quite well. Everything was getting stuck to the wound. We tried Telfa pads, but they only macerated the wound, almost inviting the infection in for a visit. I made do for a while this way, but no Doctor nor nurses had any tips on other products to use. Nicky was on topical and oral antibiotics often.
Then when Nicky was 2 years old he had a reconstructive hand surgery on his right hand. To put things into prospective, the hand was so stiff he would not even use it. He was only 2 years old!! I know many RDEB patients’ hands don’t start webbing or contracting or becoming stiff until much later, but this was our reality. We knew nothing about bandaging the hand, and even when we found out, insurance didn’t cover the cost of bandages and we couldn’t afford them. The hand surgeon, a gung-ho of a man I will never forget, introduced me to Xeroform and told me the amazing benefits of anti-microbial products in fighting infections. This gauze is particularly useful as a dressing because it is non-adherent, meaning it won’t stick to wounds, and it has antiseptic and antibacterial qualities that help keep wounds from becoming infected. He also told me that his body would not build a resistance to it like it could for antibiotics. From that moment on, any wound that looked even slightly infected I would cover with Xeroform and it would heal perfectly thereafter. Even one time when Nicky was 3 or 4 and Dr. McGuire swabbed the wound on his foot which proved to be infected, by the time I got the prescription for it once I got back home, the wound had healed thanks to the Xeroform. We also now use the silver products, which have similar agents, and I also spray Tea Tree Oil (it destroys bacteria) on them before applying them to the wound. I also love many other products, so I make my own concoction of Desitin or any 40% zinc cream (which helps the wound heal faster), Argan Oil (promotes healing), ulcer healing cream and Medihoney (also promotes healing).
Infections beware! I am on the job and you’re toast.
Perhaps it is because the condition is so rare that nobody could give me straight answers, but I want to encourage other parents never to take the word of a Doctor as final, you can disagree and you can make your own decisions and do your own research. Nicky of course, could not be his own advocate, I had to be that person for him to do the leg work and I gladly did it.
Of course par for the course was to make sure Nicky didn’t get the wounds to begin with, hence my wrapping techniques changed and evolved over the years. As he has gotten older, now Nicky has wounds that do not want to heal at all, but they are and we keep them infection free for the most part using these products and padding for protection. We all do what we must. Don’t let anyone tell you you’re doing it wrong. You know yourself and your child best. I often say I know my son’s skin better than I know my own, and I mean it!!!
Trust your guts!