Does my daughter have Lupus?

My daughter is 15 months old. About 2 weeks ago she developed a spot right on the bridge of her nose. At first I thought it was eczema starting up (she's had it on her back before but never her face). The spot remained as it was for a week or so, until whilst on holiday it suddenly spread across her face, resemblant of a butterfly rash. At first I put it down to it being quite windy on holiday and the salty air affecting her skin. I took her to the Dr's when we got back and the Dr wants to refer her to a specialist as a precaution in case of Lupus.

I note that hair loss is also a symptom. Around 3 months ago, my daughter had about a week of shedding hair, which at the time I was told was a reaction to a recent infection she had had. I also noticed my daughter had 2 mouth ulcers last week, but she is teething.

I am absolutely worried sick. I am trying to be sensible but there is no getting away from the fact she does have a typical butterfly type rash. She is 100% well in herself and has no other health complaints. Please can anyone help me? I can't find any cases of toddlers having this disease. Thank you for reading x

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  • Many thanks for your reply. She has been referred to a specialist (paediatric dermatologist) as the only symptom she has at the moment is a facial rash. Do you mind me asking why it is easier to diagnose in children? Is it because they usually have more symptoms? My daughter only has one at the moment, unless the hair loss and mouth ulcers were related.

    There is no-one in the family that I know of that has lupus or a similar condition. I keep looking for other reasons as to why she might have the butterfly rash, but I can't find any.

  • I forgot to say, she hasn't had any blood tests as yet

  • Hi Daisy-flower83,

    I'd like to apologise for us providing you with some incorrect information which was due to an unfortunate misunderstanding. Lupus is in fact no easier to diagnose in children than it is in adults.

    We do have some further information about lupus in children in some books within our office. If you would like me to scan this and email it to you then please feel free to provide me with a contact address at paul@lupusuk.org.uk

    Rashes can be symptoms of a variety of different illnesses - hopefully the specialist will be able to provide you with a diagnosis for your daughter. Please let us know how she gets on?

  • Hi thank you for your reply. If you could send me the info please, my email address is Laura.nally@icloud.com

    Thank you very much. I have looked on te Internet and I can barely see any cases in toddlers. My daughter is only 15 months and is very healthy in herself. My instinct is telling me there is nothing wrong with her but the fact she has what looks like butterfly rash is scaring me to death because I can't think what else it could be.

  • I've now responded to your email. It is very rare for lupus to be diagnosed in a person of your daughter's age. According to Donald E. Thomas Jr. (M.D., FACP, FACR) in 'The Lupus Encyclopedia' (2014) approximately fourteen cases have been reported of lupus in a child under 1 year old. Most cases in children are in those over the age of 5 (and this is still rare).

  • Thanks Paul for the info provided. I have tonight noticed 2 ulcers in her mouth that don't seem to be causing her pain. Another symptom? I really am a nervous

    wreck :-(

  • Recurrent mouth ulcers can be a symptom of lupus, but ulcers could also be the result of a virus (such as hand, foot and mouth or a wide range of others), teething or something else entirely. I can appreciate your anxiety.

  • Thank you. I'm trying to remain calm and sensible and focus on the fact that she is completely well in herself. She doesn't have fatigue or fever. Would you expect to see this if she did have Lupus?

    Also, her facial rash started as a spot in the middle of her nose. She had this about 2 weeks until it suddenly spread across her face. Would you expect Butterfly Rash to act in this manner?

  • I'm afraid I can't comment on the development of her rash because I am not medically trained. All cases of lupus are different and display differing symptoms. Fatigue is the most widely reported symptom, present in approximately 90% of cases. Flu-like symptoms, inflammation, joint pain, muscle pain and weakness are all very common symptoms of lupus too.

  • Thank you. I will remain hopeful and cling onto the fact that she is well in herself, doesn't have fatigue or fever and the chances of someone her age having it are extremely rare. When o write it down like that it makes me feel a bit more hopeful.

  • Hi Daisy_Flower

    Firstly Hello and try not to worry ! Easier said than done I know... I agree with what has been said to you already but little ones when teething often get very ruddy / rashy looking cheeks and mouth ulcers, which may be related or maybe an infection which is easily treatable. Not trying to minimise your concern and most likely you may be aware of this already so apologies if this sounds a bit like I'm trivialising the matter .I'm not -,just considering more likely possibilities. Do you have a Health Visitor whom you can contact. They can be very helpful and your Surgery should know or there should be a Baby clinic ,run by an HV and again the surgery will/should have details. Do hope you have a Health visitor and one you find easy to talk too.Let us know how you get on. Take care

    Ursula

  • Hi Ursula. Thank you for your reply. I hope to god it is just teething related. It's just that it is a very definite butterfly rash, it sounds just like it, with the parts around the nose spared by the rash too. I feel like I have convinced myself she has got Lupus because I can not see any other logical explanation for this type of rash and the shape that it takes. The only ray of hope I feel there is is that she is fine in herself. I am so scared. I'm at work at the moment and I'm trying to fight back tears all the time, the waiting is so hard.

  • Hi Daisy-flower83,

    Please try not to worry. I think reading between the lines your GP is being over cautious. There could be lots of reasons why your daughter has developed this rash.

    The most important thing with assessing children is are they well in themselves? Are they behaving as normal, eating, drinking, reacting to loved ones, normal nappies and meeting developmental goals. That is their way of communicating to us that all is well with them. I hope you get an appt through quickly to allay your fears.

    Best wishes

    Keyes

  • Hi Keyes, many thanks for your response. You're right, our Dr probably is being overcautious. It doesn't help that I am such a worry wart (can you tell haha) and I always manage to convince myself of the worst. She is 100% well in herself and is a very happy, energetic little girl. It's just the rash and the mouth ulcers that have unnerved me. The mouth ulcers don't seem to be causing her any pain, and I had ready that lupus mouth ulcers are usually painless, so this was just another thing that added to the list to help me convince myself.

    Also, my daughter had tonsillitis and high temp a few months ago. About 6 weeks later she had a week of her hair thinning. At the time the Dr said that it was a reaction to her having had a high temp, apparently it can shock the hair into a resting stage. But again, now I read that hair thinking can be a symptom of lupus? Her hair has thickened back up again now and it hasn't happened since.

    So there you have it. A butterfly type rash, mouth ulcers and a period of hair thinning a couple of months ago, but fine in herself. Am I right to assume the worst?

  • HI daisy-flower

    Thanks for your message back.

    I agree with the comments from Keyes and others and the fact that she is a happy and energetic little girl is a positive sign. It's worth mentioning too that not all people with diagnosed Lupus have the rash although that is very often referred to.

    Do hope you and your daughter get seen fairly quickly and that the Dermatologist can tell you what may be the most likely cause of the rash .Meanwhile do try not to worry and enjoy your little girl and you'll be in my thoughts .

    Take care

    Ursula

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