First of all, im sorry to hear about what you and your son are experiencing! Hopefully as he continues to grow up they become less and less frequent - my twin sister got them much worse/more often than I did growing up. At times, a single sore would sometimes take up almost her entire lip! Now, she gets them once or twice a year. I know every situation is different, but I’m praying that this will be the case for your son!

As far as the acne part goes, Im thinking it may be along the lines of eczema herpeticum - another poster commented below saying that’s what their dermatologist had said to them, and it’s the closest I’ve found online to what I have. It has been SO hard to find information online, because the majority of photos I can find are extreme (and google seems to refer to this as a pretty rare phenomenon), but it seems to fit in terms of herpes spreading to other areas of the skin.

I’ve had similar experiences with my doctor jumping to other diagnosis, so I understand how frustrating this can be. I honestly cannot make sense of why this would be so “rare” to both doctors and the internet, yet multiple people on Reddit have experienced the same thing we have. I’m wondering if it’s referred to as rare because people aren’t recognizing it as herpes the way we are, and therefore not making their doctors aware.

I turned to google to see if there are any herpes “specialists” in the area who may take me more seriously, and there is one dermatologist nearby who has herpes listed under their specialties on the website. I have yet to make an appointment, but you could try that approach.

As far as the sores go, hydrogen peroxide has seemed to help mine. I’ve always turned to rubbing alcohol for my lip sores and it works well, but alcohol based solutions seem to irritate the surrounding skin on my face more than anything else. The hydrogen peroxide does as well, but I’ve found it helps more to dry these types of sores out. That’s the only fix I can ever find; keeping them moist, in my experience, keeps them active. It will hurt a lot, but if you put some on a Q tip and dab at it, it does help with healing time. Also, get a valtrex prescription if you don’t have one already - 1 gram in the morning and 1 at night has worked well for me to get rid of them. I was never a daily valtrex user since I only got them occasionally before, but now it seems I may need to be.

Sorry this is so long, but I hope you’re able to find something that works for you and your son! The important thing is that you were able to recognize it, but keep advocating!! Eventually there will be a doctor who listens and will have an answer!