Hi all. We had our 2nd apointment today with the paediatric dermatologist, which was a joint review with other doctors.
Isla's bloods were normal but the Dr said that lupus doesn't always show up in blood anyway, but that there is nothing else to suggest lupus at the moment. Another 5 doctors looked at her and they all agreed it's too early to put a diagnosis on it but for now they think it may be sunlight sensitivity (I'm rubbish and have forgotten the name of the condition she said, it wasn't photosensitivity, it had a more technical term. I should have written it down). Dr wants to see her again in December, as if it is that, it should fade as the sun dies out a bit. She's also invited us to a conference in February where all the dermatologists get together as she thinks that may be useful for them all to see her and discuss it there. She said she won't biopsy at the moment as is too invasive at her age when it's not immediately necessary. She says there's tests for this sun light condition but islas too young to have them.
So basically, at the moment we don't really know what it is.
I'm happy though that they are keeping a close eye on her and seem keen to get to the bottom of it ️xx
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Daisy_flower83
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Thanks so much for your news 👏👏👏👏! good news alround: the system is stepping up for you big time...you've found a really really good hospital dermatology dept and this Dr is properly interested in , alert to and behaving responsibly re your lovely daughter's case. Clearly she intends to monitor closely. Seems to me this is a great credit to you & your GP. I v much like the conservative approach your dr is taking re biopsy etc. And the joint consultation + the invitation to attend the conference are great! I hope you are feeling: so far so good! Am sure you don't need anyone to say: keep up the good work (Oops: I've said it!) ...cause I think you know that the close eye you've been keeping on this & the way you've driven this forward are key to the attention you're getting ongoing. 👍👌please keep us posted🍀😘
Hi Barnclown! Ah thank you for your lovely comments. I certainly do feel 'so far, so good'.
I almost fell off my chair when 5 other doctors walked in the room along with our consultant! I knew it was going to be a joint review but thought one maybe two more.
They all seemed very interested, I think because it wasn't something they was familiar in coming across, in such a young child anyway.
I feel like we are in good hands anyway, and for now, I will put lupus to the back of my mind. I think, as I suspected, this is very much going to be a 'time will tell' situation. Hopefully it is something she will grow out of (it's still there, it never disappears completely) ️xx
I admit: I keep thinking of my poor worried young mother taking infant me with my awful rashes to those consultants in Philadelphia way back in '53-4...back then medicine was virtually in the Stone Age when it came to treating lupus...steroids action was just beginning to be understood, and lupus itself wasn't all that well understood. The science has come a long long way since those days...where Isla's rashes are concerned, whatever the reason for them, diagnosis & treatment are much advanced and much more effective now. My mother wasn't as resourceful as you are. Poor thing buried her head in the sand regarding lupus. I can't judge her harshly for that. And this contact with you here on forum is helping me accept her dilemma.
And IF any sort of chronic condition is involved, the fact you'll ID it early on means effective management is bound to come at the best poss time. IF lupus is implicated, it's a relapsing & remitting condition and has many forms...patients with my sort of relatively mild form can have a relatively smooth time, especially if they get good systemic treatment when they need it most (which I didn't because when I moved to the uk at 21 the infant-teen diagnoses were lost and I was unaware of them anyway)....+ with every year that passes medics are increasing their skill at treating this sort of conditions, so youngsters now are bound to benefit
So, thanks daisy, and best wishes to you both👍👍👍🍀🌻
It must have been very hard for your Mother. I think the fact that there was no internet back then probably made it easier to bury ones head in the sand. It's only because I scared myself half to death looking on Google that I initially took Isla to the Dr's, looking for immediate reassurance, although the Dr wasn't really able to give me that. If I hadn't googled 'rash across bridge of nose and cheeks' I would never have even thought of Lupus. It's not a disease I really knew anything about.
I also think it must be hard for any mum to accept a diagnosis of their child, and then get through that whilst trying to maintain a happy environment for that child. I was petrified at the thought of her having this condition at first, so much so that I literally felt I was dragging myself through the day and forcing myself to be upbeat for her so that she wouldn't sense my anxiety. It's blummin hard work being a mum! ️Xx
Beautifully put. This is what I've been telling myself over the past 4 years. But having it from you makes it more real & meaningful. Hoping not to make you blush, but I think you are really great! And the same goes for the few other mothers on this forum
This thread is not about me, so I don't want to go on much more, but I hope you'll not mind if I add that at first in 2011 I was just so grateful to to my mother - for helping me & my Drs by admitting this crucial secret...and I felt so relieved she was still alive & fit enough to explain in convincing detail. She says that during the years of my early diagnoses. she had thought lupus was like a bug: once you seemed to 'recover' the lupus was gone. So I like to imagine that way back then she was being positive on our mutual behalf. There was no reason she could've seen lupus as underlying my persistently relatively peculiarly dodgy health & seeming predisposition to infections etc. And once I was at the point of re-diagnosis in 2011, it was really wonderful to see her happiness at playing a key role in figuring things out with me & my medics...just as you are now with your daughter & her doctors. You good mothers are wonderful to me: I know it's really truly hard work! You've helped me to learn important lessons. And I am hugely grateful to you. It's my incredible good luck that we happened to coincide here on forum. Thanks again, daisy
Ah thank you Barnclown. I am so pleased ive been able to be helpful to you, as you have me too, very much so!! I will continue to update on here, our next appointment is 11th December, so I'll let you know how we get on. Take care ️xx
Hi Daisy-flower, as Barnclown says, b****r of a disease to diagnose and treat as there are many forms. I too am in the same position, my daughter who is now 30, has had all the symptoms of your daughter since a Night Visit doctor asked me to take her to Casualty (when she was 2) with joint pain (couldn't stand), body rash, projectile vomiting, fever. After many hours spent overnight with drs coming and going, saying they were contacting other agencies to try and identify what was wrong with her In the end they diagnosed "slapped cheek syndrome" (medical name foot & mouth disease!!!!!). That was 28 years ago - OMG doesn't time fly?
I didn't know anything about Lupus or the many forms of vasculitis, PMR, GCA, Reynauds but have just been diagnosed (July 2015). I too, am quite worried about my daughter as she has had very similar symptoms to me over the years. I Just thought "oh she takes after her mum". I am keeping a very close eye on her until I get all my scans and bloods back, I really don't need to tell her just yet. She only got married 2 years ago.
You and your daughter are not alone. You have friends "us". I'm sure you are a comfort to your daughter and remember, she knows we mums will do anything we can to protect our young.
Hi Babs, thank you for reply. I think sometimes the hardest part is the not knowing. I feel like I need definite answers, but the Dr's just can't give them to me at the moment. They will only say that Lupus is very unlikely.
I think only time is going to tell and so I am going to try and put it to the back of my mind. It's hard though isn't it. Always something to worry about hey!
Brilliant news! Did it sound like polymorphic light eruption? I have a little girl at school who has this, she has to have antihistamines and suntan cream applied apart from this she's well. At least the doctors will keep an eye on her now. X
Hi Chris! Yes!!!! That's exactly it!! It's been on the tip of my tongue, I knew it began with a 'P' ha ha.
I've just had a look on google and it says this type of rash usually burns or itches, however Islas doesnt? I'm not sure the images look like hers, but then they all look different anyway so could still be?
Does the little girl at school wear suncream even in the sun when it's not hot, I.e. Autumn or Winter sun? It's something I forgot to ask. Why do you always think of lots of questions once you come away!? ️Xx
Hindsight is always a nusiance 😜 occasionally she still has cream put on in winter as also antihistamine her mums not quite sure what triggers it. I wonder if it's possible that babies skin don't feel itchy like it does as your older? I'm thinking along the lines of temperature, babies don't sweat the same as older children.
Your hubby is right, don't worry about lupus, what will be will be and I'm sure there will be other things along the way to cause you sleepless nights, especially when she's a teenager and the stroppy hormones kick in lol x
I'm so pleased to hear that the Doctors are taking an interest in getting some sort of answers for you. The problem with lupus is that it is a crafty disease and can often make you feel like a hypochondriac and often leaves the Doctors a little bit stumped due to the myriad of ways it shows itself to each sufferer. I have often felt this myself and it is extremely frustrating when you know you're not well and nothing is apparent from the bloods etc. She may be photosensitive hence the facial rash so I would be careful with her around sunlight etc. I'm photosensitive too and wear factor 50 sunscreen all year round especially on my face as I find even winter sun can cause skin flare ups, even through car windows! You can probably get a good quality sunscreen on prescription for Isla so mention it to your GP. In the meantime, try not to worry and enjoy your beautiful little girl. It's going to be building up to Christmas soon so that's something exciting for Isla to look forward to. If she's anything like my children used to be, she will be wanting everything in the toy section of the Argos catalogue! Take care and best wishes x
Hi Louisa. It's so hard because I do feel like a hypochondriac! My husband is of the view that her bloods are fine, she is well in herself, she's been seen by all these doctors who don't think further testing is necessary and so I should just drop the lupus thing.
It sounds silly but it almost makes me feel like people think I WANT it to be lupus. Obviously I dont, but I have done so much research that i understand that it can be so difficult and a frustrating journey to diagnosis. Of course, it may not be lupus at all, but I still have the possibility in the back of my mind. My husband on the other hand thinks im just hurting myself and I need to let it go ️xx
My 15 month old has an almost identical rash to your daughter's and they are also considering lupus. We are very scared and worried. She just had blood work drawn today. Do you have any updates about your daughter?
Thank you so much in advance. Any information would be helpful and comforting.
Hi jratto - I know this is many years old, but can I ask for an update? My 11 month old has this same butterfly rash and I am so so scared that it is lupus.
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Facial rash or not?
Is it fibro though?
Facial rash 
