I wrote extensively about it in my book (Butterfly Child), but I feel the need to make my feelings more “public”, so to speak, because, once again, I was attacked for it, merciless.
I am not sure why people I do not know, who very obviously (having met them or seen their pics) are dealing with a different subtype or subform of EB feel the need to go to the extent of calling me a “bad”, “horrific” or a “crazy mother” and why they feel the need to “tell me what to do”, as if, after 19 years of inspecting every inch of Nicky’s skin and trying all sorts of things to improve things, apparently I must be an idiot in their view. When I tell them this (yes, “them”, this has happened many more times than just once), they said that they “know better than me” because they have EB too, and unlike me, they have EB, so they know best.
I cannot tell you how irritating this is. It’s so condescending and disrespectful I wonder why they think that EBers are all created equal and the same. They are not. I’ve seen EB in every way, shape and form, and I am here to tell you, EVERY EB PATIENT IS DIFFERENT. Do not compare. Ever.
I’ve said this before, but I will say it again. There are so many subtypes and subforms of EB that to bunch them all up in one neat little package or treat every patient equally is a great disservice to each and every one of them.
So, why do I bandage Nicky? Let me give you some examples.
- When Nicky was just a few months old (no more than 3 or 4) he developed a big blister on his chest. I popped it and air dried it. The skin that regrew from there was a gigantic eye-sore; it was weak, leatherlike. It was so weak, in fact that within days of healing it re-opened as a wound, and the wound was exactly… EXACTLY the size and shape and covered the same area it was before. This time I kept it moist, I bandaged it. Yes, it took longer to heal, but when it did, the skin was now looking perfect, no scarring at all. None. It never re-opened again. Never.
- Nicky was 18 months old when he developed a blister as big as my hand under his shirt. I was not bandaging his chest at the time, and when all of a sudden I noticed his shirt being completely soaked, I lifted it, and in horror this monster blister covered half his chest in front AND back. It was enormous. That’s when I started bandaging Nicky’s chest heavily to prevent this from happening again. It never happened again. Never.
- There have been times, too many to count (hundreds for sure) where a blister appeared ONLY in an area that was unbandaged and promptly stopped when it encountered a bandaged area. It never infiltrated the bandaged area. Never. Hmmm…
- There was a time when Nicky was 5 to 7 years old that the area on his leg between the knee and the ankle was a giant open wound on both legs. Just imagine having both your legs RAW from the knee down. It was horrible. In frustration, mostly because I had a new baby (call it lack of sleep or whatever) I decided to wrap his legs HEAVILY. By heavily I mean using two rolls of webril and two rolls of kerlix on both legs to prevent him from scratching and allow the healing to take place. After 4 months, both legs were completely healed. Nothing else had worked before. Nothing.
These are just a few examples from the book, but they explain well why I feel for Nicky, bandaging is the best option. I am not speaking for anyone else here, I am just speaking for Nicky. This is what works for him and him alone.
Over the years we tweaked things. We bandage more or less on areas depending on what keeps the blistering at bay and what doesn’t. Some areas require more bandaging, some areas less, some areas none at all. We just go with the flow with what works for that particular body part at that specific time. And, trust me, I would not be spending all this time bandaging if I didn’t feel it was necessary. I just do what needs to be done. For Nicky. Not for anyone else. For Nicky. What I do or say in no way dictate what anyone else should do. We are all in a trial and error mode here.
I may not have EB myself, but I do know my son’s skin. Boy, do I know my son’s skin!!! Please don’t tell me or any other EB mom otherwise. It’s just rude, it really is. Respect and support is what we need, not judgement and being called names. Don’t pretend to know what someone else’s life is like, not even if you have the same general diagnosys, I don’t judge you, so please don’t do the same to me.
Thank you for allowing me to vent,
Love and Light,