Diagnosing teenagers

[DaleDiva]

My daughter has similar symptoms to me and has not really been well for 18 months. She is 18. I am aware that Lupus can be familial so asked her to go to the GP to ask about testing. GP has told her that there is no point doing bloods as at her age they won't show any anti-bodies. I am sure there are people on here who were dignosed young, would that just be on clinical presentation? Should I insist on testing?

[MaryF]

My daughter has been significantly ill for a long time, she passed an SLE lupus test at the age of 15, but she did at 5 but I was told it was a fluke.. her joints hurt, her migraines are dreadful and she has seizures, she has suspected Hughes Syndrome also, just like myself. The fatigue is awful... and we are a family that does no ready meals only healthy food, not the 5 a day more like the ten a day, and we all exercise, something was clearly very wrong. She has full diagnosis now. However often the antibodies do not show up until puberty or just after, I have been told that so many times. Mary F

[DaleDiva]

Thanks MaryF. She has been diagnosed with Glandular fever, so a lot of her problems stem from that. It's just that her illness mirrors my own and I thought it might be an idea to have her tested. Will just keep an eye on her

[Purpletop in reply to DaleDiva]

Glandular fever can sometimes trigger lupus, so you're right to have her tested, even if to start keeping a record of her symptoms and blood tests, for future reference. If it turns out there is nothing to worry about, great.

[Paul_Howard Partner LUPUS UK]

Hi DaleDiva,

Your GP clearly has no idea what he is talking about. Her age will have no effect on whether she would have the antibodies or not.

I'd recommend you get a second opinion.

If you're able, ask for a referral to see Dr John Ioannou at UCLH. He is the UK's only Adolescent Rheumatology consultant and is a lovely chap.

[jemmyjemjem in reply to Paul_Howard]

Hi Paul

Would Dr Loannou deal with children as well, as I have just got back from my GP as we are concerned my 5 yr old son is presenting with similar symptoms to mine, he is just about to be refered back to peds, who he was under for a year as they thought he had hodgkins disease, but in fact he had post viral fatigue .... he is presenting with same symptoms, enlarged lymph nodes everywhere, back ache round the kidneys, extreme fatigue, no appetite (apart from sweets funny that), night sweats, achy knees, he maintains a constant weight, is pale, I am just wondering if its coincidence.

many thanks

Jem

[Paul_Howard Partner LUPUS UK in reply to jemmyjemjem]

Hi Jem,

The best person for Juvenile lupus is Prof Michael Beresford who is at the Alder Hey hospital in Liverpool.

Alternatively, if London is easier Dr Ioannou also consults at Great Ormond Street Hospital I think.

[jemmyjemjem in reply to Paul_Howard]

thats fab thanks ... I eill go armed with that info when i see the pead consultant .. sods law .. I start to feel better and then E takes a nose dive ...

[flutterby]

Hi, my daughter is just coming up to 18 and has had symptoms that seem similar to mine coming and going for many years. She was diagnosed with glandular fever at around 13. She has twice had ANA test done, along with other blood tests. The second time was a few months ago and I did have to firmly ask that they added it, the doctor (not my usual one) clearly thought I was a ridiculous mother, but I was firm that as they were running blood tests anyway I wanted it done. They didn't show anything, which is good, but not conclusive as we know. It is difficult, I don't want to over react, and I don't want her to be concerned, but I have a gut feeling that there is 'something' going in. I would definately have another doctors opinion, and have blood tests done, and maybe a referal especially if she has had symptoms going on for such a time. Best wishes, to you and your daughter xxx

[DaleDiva]

Thanx to you all. I have a rheumy appt next month so might ask him for an opinion. I feel it is something I need to persue. You are right flutterby, there is a line where Mum's are seen as caring which soon crosses in to being seen as pushy. I just want what's best for her, like a Mum's.