So many different symptoms??

Hi, my 3 year old daughter is under investigation for possible autoimmune /inflammatory condition. She has all the "common" symptoms of lupus...fatigue, sore, achy limbs, red burning itchy hands, numb hands and feet, itchy skin, redness and rash (comes and goes) on her face. Also enlarged lymph nodes. She also has very high fevers with no underlying cause, wakes up shaking and shivering uncontrollably from her sleep often. Last night while taking to me and her dad she suddenly stopped, totally "zoned"out for about 30 seconds....she was aware something had happened afterwards but was really scared as we were. She was fine after about 10 minutes of cuddles and reassuring. Is this another symptom to join the others as I'm really concerned about brain involvement? Already numb hands and feet would suggest nervous system involvement. Sorry for long list! But I can see the extent of everyone knowledge and experience on here and would really value feedback. Thank you!

3 Replies

  • I am very sorry to read about your daughter. You are understandably anxious as would any parent.

    My first question is to ask whether you are seeing a consultant rheumatologist and/or paediatrician? I think it wise that you contact your GP and consultant and report what happened to your daughter being "zoned out". Your GP may be able to speak directly to your consultant regarding this new symptom. While there may be all sorts of "possibilities", I'm not sure this is helpful to you. On the other hand, finding out about lupus or Hughes (the antiphospholipid antibody) may well feel you are doing something.

    Naturally, you want to know what is going on and it is scary not knowing when this affects your 3 year old daughter. Your daughter needs expert medical help and I also think you also need psychological support through this very difficult time.

    I have sent you a message about the LuPUS Message Board and if you want to talk, please contact me again or register at the LuPUS MB.There is a forum for Teens with Lupus which includes children.

    There is a new article entitled Childhood-onset Lupus:

    With good wishes,


  • Dear Ros, thank you for your reply. We were seen by a general paediatrician, it is unfortunate he is now on sick leave until end of March. I did contact my GP regarding the new symptom and he has been fantastic. He managed to access some of her test results and has also sent another urgent referral letter to our paediatrician's colleagues. Just waiting to hear back now. I have been doing some research but all the advice and "pointers" from this site have been so helpful. I also joined the message board, thank you. I have some fantastic colleagues and friends at my work as well as wonderful family who are very supportive but I appreciate the need for support. Waiting for answers is very hard but hopefully we will have some soon. Thank you M

  • Just to reiterate - you can talk to me at any time.

    With good wishes,


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