unknown face rash

[Demaso33]

hi—

My five-year-old son has had a rash on his face for over a month now. The rash initially started on his ear but resolved,, however the face stayed the same. We’ve taken him to his pediatrician emergency room and dermatologist and nobody knows what it is. Right after the spots started to appear he had mouth sores. They did a skin culture on him for bacterial and fungal infections and it came back normal. All of the doctors we saw seem to think that it’s viral. But we did a herpes culture on his mouth which came back negative. He also has random tiny spots on his chest (about four of them) that have not gone away and have been present for as long as the face rash. We also did bloodwork on him and his white blood cell count came back mildly low at 3.8 the lead cause being his neutrophil count which was at 1.5. They repeated the bloodwork two weeks later and his wbc returned to normal range (they suspected a virus). No inflammation markers in the blood test, his ESR levels were fine. No blasts were found in the blood either. He also tested negative for ANA test twice now. Everyone is telling me to stay calm but I just can’t. the rash started out as bright red blotches. Over the past couple of weeks the Marks dried out a little bit and started to blend and look something like this (see attached photo). Other than the rash and mouth sores he has been acting completely normal. He’s eating, not losing weight, no pain, no fevers, no illness and he’s running around like his normal self. Attached to will find photo of how it looks now. Initially it started as just red blotches but now this I wanted to ask if this looked like a cutaneous lupus rash? I know his blood work came back normal, but I would appreciate some feedback! Thank you so much

[Barbara17]

Hello. I have cutaneous lupus and this could be. Or he just might be allergic to a new soap, shampoo etc. I was diagnosed in 2015 after a lifetime of strange rashes, allergies etc. and it was confirmed by a biopsy of the rash - not something you’d want on your face. Does it get worse in sunlight? I have to avoid the sun and that would be very difficult in a wee boy. I think you may have to take him to a dermatologist for a diagnosis. 🤞he is ok and everything clears up.

[Demaso33 in reply to Barbara17]

Thank you so much for your reply Barbara! I cannot really tell yet. He has had three dermatologists look at this and unfortunately , none of them have giving me any helpful intel. We just put in a referral to have a skin biopsy but they are booking out for a few months since it will need to be done with a plastic surgeon— given his age and how he won’t let anyone go near his face (will have to be given anesthesia). I am very nervous about it but I just want to get to the bottom of it. One of the dermatologists suggested it could be an atypical form of psoriasis so he did say try getting him in the sun because that would help but I am nervous about it if it is in fact cutaneous lupus. May I ask, with cutaneous lupus did you have any mouth sores or any finger nail changes? He has slight inflammation below his nail beds…also may I ask if your ANA test came back negative with cutaneous lupus? This is all so new to me and I am trying to advocate the best I can. I appreciate your feedback! Barbara17

[Barbara17 in reply to Demaso33]

Hello. Sorry it’s taken a while to reply to you - it was our Golden Wedding anniversary on Saturday so I’ve had a busy weekend! I do have slight inflammation below my nail beds but I don’t remember anything about a blood test being done at the time of diagnosis. I was diagnosed on the appearance of the rash - which was all over my body - and a biopsy taken from one of the lesions. I am very sun sensitive now so I think you would know very quickly if the sunlight affected your son. I am in Scotland so it is probably easier for me to avoid high temperatures. I hope you get some answers soon

[Demaso33 in reply to Barbara17]

Please don’t apologize! I hope you had a wonderful time at the wedding anniversary! Thank you for getting back to me though! He has been out in the sun plenty of time during all of this with no other issues. I am praying for the best. Hoping they can get a biopsy scheduled for him sooner than later if this doesn’t resolve. I am wondering if this is a weird form of discoid lupus because from what I read, it does not often associate with systematic but not sure if this is what discoid lupus presents as. I will keep you posted !

[Demaso33 in reply to Barbara17]

Hi Barbara I hope you are well. My son had more blood work done and his ana is still negative however he has an anti smith antibody as 2 and SSA level of 3 which they are telling me is still indicated to be considered “normal” range. I am very distraught over this as the doctors are super dismissive. Do healthy ppl have antibodies of anti smith and SSA if they do not have lupus?

[KayHimm]

Demaso33 - my guess is the pediatricians are comforted by the fact that your adorable little boy is feeling good. They were clearly a bit worried about lupus because they did the ANA. The facial rash of systemic lupus usually goes with disease flare. The fact that he is showing no signs of illness is a very good sign.

I would ask the doctors straight out what his chances of having lupus are. That way they will have to explain what they are seeing.

It is hard not to imagine the worst. But negative ANA, no clinical signs, no inflammatory markers - sounds very good.

Keep asking questions.

K

[Demaso33 in reply to KayHimm]

thank you so much for your feedback! The mouth sores seemed to have die down which is reassuring , he also has red inflammation around his nail beds on a few of his fingers. All these things together is just so scary. But you are absolutely right— the fact that he is happy and healthy is what’s getting me by right now. One of the three dermatologist we spoke to thinks this could be an atypical form of psoriasis but that would not explain the mouth sores, that is why I’m worried it may be cutaneous lupus. I am going to keep advocating for him, I will not give up! Thanks so much again for your response <3

[Demaso33 in reply to KayHimm]

I hope you are well. My son had more blood work done and his ana is still negative however he has an anti smith antibody as 2 and SSA level of 3 which they are telling me is still indicated to be considered “normal” range. I am very distraught over this as the doctors are super dismissive. Do healthy ppl have antibodies of anti smith and SSA if they do not have lupus?

[KayHimm]

I would ask about cutaneous lupus. I don’t know enough about it but I think most people on the forum with cutaneous lupus have positive ANA. I also don’t think it is usually on just the face like that. Ask your pediatrician. Dermatologists know a lot about lupus too.

Keep us posted.

[Demaso33]

thanks so much! I will definitely keep you updated! 🙏🏼

[KayHimm]

It is hard not to worry but you really have to trust the doctors when it comes to knowing normal range of blood test. The lab usually has the normal range listed. And yes, people can have normal range of ANA or any of these specific antibodies.

It sounds like good news, particularly if your little boy is doing better.

Don’t hesitate to ask your pediatrician questions. They are there to reassure you.

Kay