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Hi Suzywong. Sorry to hear your son has maybe got lupus. I was diagnosed when I was 17, so no experience of it as a child. I am currently 15+4 pregnant and been advised that neo-natal lupus is very common in newborn babies (if the mum has lupus). It appears only as a rash and does not last very long. How old is your son, is he a baby?
There are MANY different strains of Lupus, some far less severe than others. When I was diagnosed, they did a 'yes/no lupus' test, and then continued to narrow it down through tests to find out exactly what type of Lupus I had. I hope your sons is not causing him any pain or problems? As charleesnnysunsun says, it often has 'tiggers' to flare ups which you can learn to avoid, and can be well managed.
I have done a bit of voluntary work for my local division of Lupus UK, so if you have any questions or where to get hold of info / contacts etc please let me know. Wishing you luck with your appointment x
ds1 is perfectly hale and hearty in himself, no worries there, it 's just that he had a couple of skin rashes, one on his face and the dermatologist sent him for blood screening to eliminate anything and his liver functions have come back as abnormal. Plus he has complained, although not for ages, of sore joints and he has very low stamina and can get tired easily from physical exercise.
My mums specialist told her that if she had been diagnosed when young she would not be as ill as she is now. You're very lucky the doctor seems to be onto it, I hope everything turns out fine. It is very manageable if spotted and treated early (not my mums case). I am going to be asking for more tests. The key seems to be family history for us...i have a grandmother and 2 aunts on my maternal line who have had Hyperthryriodism, which is also a form of auto immune disease. Do you have any history anywhere...? I know this is not always the case though
symathies to your mum, my hashimotos was undiagnosed for 3.5 years and I had 2 kids in that time.
I'm OK, I know there are worst chronic conditions to have and nothing has been actually diagnosed yet and ds1 has no symptoms that trouble him.... at the moment. Anyway the appointment with the paed imm. is in August so I'll let you know
Dh wasn't much use, I'm afraid though primarily because he said it would really unusual to be diagnosed at 6 - earliest presentation he has ever seen has been early teens and is much more common in women than men. Fingers crossed all is ok.
Suzy, will be thinking of you til then! It's horrible isn't it? I have had several tests for the Lupus condition, but the last one was 4 year ago and they did tell me it dosen't always show in bloods so will go back soon.......Want them to do a general thyroid check soon too. I have rosacea, so when ever i see a new doctor they always ask about Lupus cos i have a permanent "mask". 10 years ago they wouldn't have mentioned it. Mum is now under the care of a specialist at the MRI, he is well known in his field and is heading a massive research programme on LUPUS at the moment, he is very positive and honest, a great man!! So on the up!
Didn't mean to be non reassuring - sorry - dh thinks could be one set of anomalous results (paediatric reference ranges are notoriously spurious) and sore joints / tiredness could be growing pains. Always best not to surf on the internet! (Speaking from some experience )