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General health

Lupus in young children

20 replies

suzywong · 29/05/2007 11:04

any experience?

not saying this is the case, but ds1 is being referred to a paed immunologist.

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ghosty · 29/05/2007 11:05

No experience, sorry, but didn't want to ignore post.
You ok hon?

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suzywong · 29/05/2007 11:56

hello ghosty

well I 'm just looking at worst case scenario, we are still at the stage of doing further tests. He's fine in himself he just checks a few boxes and it needs investigating

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hannahsaunt · 29/05/2007 12:22

Dh is a nephrologist so does lots of lupus if you have any questions.

Hope all is ok (we're off to the paed endo tomorrow to talk about ds2's lack of growth hormone!).

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suzywong · 29/05/2007 12:25

oh thanks h.a
how are you finding it back in Blighty?

I KNOW there is no point speculating until we've seen the specialist, so I really should just button it.

But ... it is one of those chronic but manageable things isn't it?

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Charleesunnysunsun · 29/05/2007 12:25

I have Lupus although i wasn't diagnosed untill i was about 12 i still had the symptoms form early on. Any questions just ask.

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Charleesunnysunsun · 29/05/2007 12:27

It 'flares' up under certain situations for me its stress, heat and generall illness that makes me go down ill, it can vary in severity but it is very managable.

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LucyK1978 · 29/05/2007 14:54

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

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suzywong · 29/05/2007 15:25

thanks for all the postive responses

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.

so best to get him thoroughly checked out I guess

he's just turned 6 yrs old

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mankyscotslass · 29/05/2007 16:05

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

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hannahsaunt · 29/05/2007 16:26

Hi Suzy

Always best to err on the side of caution esp if hospital is supportive. Will ask dh tonight (it's one of the big research themes here apparently).

NE Scotland much colder than NE Oz...boys missing it v much though I quite like being a bit less isolated. Hoping to go back for another stint once this 3 or 4 year block is up.

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suzywong · 30/05/2007 00:02

mankyscotslass, sorry to hear about your mum's case

I have hashimoto's thyroiditis and thyroid disease goes right through my mum's family on the female side. Bugger.

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mankyscotslass · 30/05/2007 07:49

SW, i know, it sucks. But at least doctors are getting more aware of the condition, for years she was misdiagnosed, so at least we feel there is progress! Hope things are ok with you?

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suzywong · 30/05/2007 08:47

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

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hannahsaunt · 30/05/2007 09:54

Hi Suzy

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.

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mankyscotslass · 30/05/2007 10:17

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!

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suzywong · 30/05/2007 11:16

Gulp, HA

so if I'm barking up the wrong tree and there's every reason I am seeing as how I am not a doctor ........ I wonder what it could be?

Right this is the last time I shall post, speculation is dangerous

that's good news about the support your mum is getting manky - are you really manky? I suspect not.

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mankyscotslass · 30/05/2007 11:27

Suzy.....i think it's probably my mums assessment of my housekeeping skills!!...maybe also my SIL's when she looks around too, judging by the expression on her face....

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hannahsaunt · 30/05/2007 20:09

Suzy

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 )

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mankyscotslass · 31/07/2007 08:55

Suzy, how is your Ds now....not long till his app at the hospital is it? Please let me know how you get on!