Daughter - Facial Rash Update

[Daisy_flower83]

Hi all, further to my recent posts, we saw the paediatric dermatologist today. Doctor has done some blood tests and we go back a week on Tuesday to see her and a panel of other doctors as she wants some other doctors to look at it. She said lupus is rare but doesn't mean to say it's not that but she thinks it's more likely baby acne or an unusual type of eczema. Blood tests are for lupus although she said they're not always conclusive.

I feel

Happy the consultant is calling in a second opinion, but I feel sure the blood tests won't show anything if it was to be lupus, as I indertand blood tests should be done during a flare, and even then don't always show positive?

I have a feeling this is going to be an 'only time will tell' situation ️xx

[EOLHPC]

Many thanks for this update

It is really good news your consultant wants colleagues to help in these considerations👏👏

Yes, diagnosis is often an ongoing process. in many cases there can be an initial provisional diagnosis at the outset, with refinement continuing for several years

Blood test results are part of the picture, and your consultant will need "baseline" results now, which will be a useful comparison & guide over time as the diagnostic process continues

Hope you'll keep us updated

🍀🌻

[Daisy_flower83 in reply to EOLHPC]

Thank you for providing that information Barnclown, I'm glad to hear the blood tests will be of some help. There was no mention of a biopsy at this stage. I feel quite calm about it all surprisingly. I don't quite feel as worried as I did? I dont know if that's because she is well in herself and so I feel no impending need to worry, or whether I have just got used to the situation? Xx

[EOLHPC in reply to Daisy_flower83]

Am so glad you're feeling this way: you've been doing a great job & have earned this calm. You've given the consultant the benefit of your careful observations. your collaboration has got off to a v good start. This is a big credit to you all, Isla included. 👌🍀

[Daisy_flower83 in reply to EOLHPC]

Ahh thank you ️xx

[Chris21]

How funny, I was only thinking of you the other day and wondered how Isla was and there you are! I'm pleased to hear that it's being looked into carefully, how is the rash now that the weather is changing?

We always 'panic' when we find/hear something is wrong with our babies as its instinct to protect them. I'm afraid she will give you a few more grey hairs over the years lol hope next week will give you some answers, as you' re said, she's well in herself, so nothing to worry about. Enjoy the weekend x

[Daisy_flower83 in reply to Chris21]

Hi Chris, thank you for thinking of us! Her face has been quite good over the past few weeks. You can see like a mark of where it has been but it's very faded. Often a couple of red blebs appear, last for a few days then fade again, usually when she has been out in the sun but not always. Xx

[Creola]

The doctor can do a skin scraping of the rash to test for lupus.

[Daisy_flower83 in reply to Creola]

Thanks Creola. I will ask about a skin scraping at our next appointment x

[Louisa-Rose]

I too was only thinking about you and your daughter the other day so glad to read the up date and that you are receiving the medical attention you need for Isla. Lupus is a tricky one and it can take many tests etc., to get a confirmed diagnosis. You do sound less panicked and worried than a few weeks ago and I am pleased you are not letting it get the better of you and it's good to hear that Isla is well and long may this continue. Sending you lots of warm wishes. Take care x

[Daisy_flower83 in reply to Louisa-Rose]

Hi Louisa! Thank you for thinking of us too. Yes I am less panicked. Apart from the rash there are no other symptoms going on. Her mouth ulcers cleared up and didn't come back, so I am still trying to think positive and think maybe there is another explanation? I think if we get a diagnosis of lupus then I can imagine I will be very frightened. I have a feeling though that, as you say, it's not going to be that easy and we are going to be left wondering. ️Xx

[Louisa-Rose in reply to Daisy_flower83]

If lupus is diagnosed then I'm sure you will be frightened as I would be if it was my child. As a mum you would rather be poorly yourself than your child! All I can say to try to reassure you is that even IF it is lupus then the treatments and knowledge of this condition are improving all the time. In the meantime enjoy your daughter, think positive and don't get ahead of yourself with worrying about things that, at this stage, you don't need to. With very best wishes x

[Daisy_flower83 in reply to Louisa-Rose]

Thank you Louisa ️xx

[RachChapp]

Good evening. Long shot but did you get any answers regarding your daughters face? My 8 month old has the exact same and also more prominent in the sun! Honestly it’s looks identical and need some heeeeelp. Due to corona doctors only seen pics via email and unsure suggested maybe heyfever?

[Demaso33 in reply to RachChapp]

Hi RachChapp did you ever figure out what the rash was for your daughter? Currently going thru this with my son. I am so scared