Aquaphor is probably the #1 ointment used among many with EB. We don't use Aquaphor for a variety of reasons. And because of that I get asked a lot what ointment(s) we use. And my answer is this "depends on the wound"
Between my 4+ decades living with EB and trying different things with the kids, we have tried sooooo many different ointments, lotions, oils, etc...
Below are the ointments we use the most. I'll also explain what type of wound we use each on.
** DISCLAIMER**
The following is NOT medical advice. As always check, with your medical professional before trying something new on yourself/your child. Some of the ointments I will talk about are NOT safe for infants or young child, but I'll make a note of those.
Coconut Oil: We use organic, unrefined coconut oil for places that are delicate, the face, near the mouth, eye, ears. Coconut oil is safe for all ages and types of EB. Here is one brand we have used before.
In place of Aquaphor, I like Burt's Bee Multipurpose Ointment. It is "healthier" than traditional Aquaphor, but not as cost efficient for those who need large quantities. It has been good for dry skin or dry woulds or just places that need extra moisture. This ointment is safe for all ages as well.
For use around G-tubes sites and the wounds in the diaper area we use Medline Remedy Olivamine Calazime Skin Protectant Paste Cream. It provides a very soothing cooling feeling, good for protecting again wetness, and granulation tissue. It was not around when my kids were babies, but if it had been, I would have used it. But definitely check with your doctor before using this.
For intact, but dry and itchy skin, we like the following three creams. Aveeno Dry Skin Cream and Eucerin Skin Calming Cream and Sween Cream. I wouldn't use either on any open wounds or broken skin, but we find temporary relief for dry and itchy skin, especially when applied to the skin right after a bath or shower.
For smaller, non deep wounds, irritated skin I recently discovered this ointment, Cetaphil Soothing Gel-Cream. I found it does sting a little, but the pain doesn't last long. For me, it provided 24-moisture when used with bandages. About 12 hours without covering the area. It provided a cooling feeling as well. I would use this at any age.
For deep wounds that need moisture to heal, I use hydrogel, any brand. It is long last and is safe to use on large areas or open or deep wounds.
For the thick callouses we have on our feet (common in generalized severe EBS) we found that Kerasal Foot ointment is helpful in reducing the roughness of the callouses. I wouldn't use anywhere near an open wound though
Now the following is what I use on myself and wouldn't use it on an infant or small child that isn't able to communicate well.
I struggle with being colonized with bacteria and now mater how often I shower or what soap i use, it is always there. It doesn't cause issues unless there is an open wound. But sometimes it cause me to itch horribly for no reason. I experiments with many different variations.
With no open wound, dead or dry skin, I use just plain Vick's vapor rub. When i am dealing with excessive itchy, flaking, infected wounds or excessive bacteria on the skin, I made the following ointment:
4oz vick's vapor rub
1/2 tube of polysporin antibiotic ointment
1/2 tube of hydrocortisone cream
1/2 tube of Hemorrhoid Treatment Cream (for pain relief)
I mix it all together. I use it mostly on my feet and ankles. It helps with itching and pain. I use under bandages and change daily, and clean the areas very well daily in-between bandage changes. I have tried it on large open wounds and not only does it sting, I saw no benefit form it in regards to healing. Sometimes I'll change out the antibiotic ointment for something stronger, depending on what bacteria I am having issues with. This is one I would NOT use on infants or children. I am willing to risk any long term side effects I may suffer on myself, but not my kids.
When it comes to wound ointments, it really comes down to personal preference, comfort and what works for that particular person. But it always good to know what is out there and what works for others.
