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· Registered
86 Posts
Discussion Starter · #1 ·
Hi there
I hope I am just being paranoid but I am beginning to worry that my daughter has lupus. I have SLE and I believe my mother has too (she has ulcers, sjorgens, osteoarthritis and had acute nephritis as a child but refuses to accept she might have lupus). My daughter, just 2, was a very hypermobile baby and has been diagnosed with Hypermobility Syndrome, but after a year of physio she is much better and is an active child who is quite strong in her muscles. However, she still gets utterly exhausted after physical exercise, has to be paced really carefully or for instance if she does too much in the morning will cry all afternoon on the sofa after her nap. Her physio and her doctor are now saying that the level of tiredness she experiences can't be explained just by joint hypermobility. She has been seen by a rheumatologist who said it was hard to tell if she had any joint inflammation but seemed ok. She is being referred to a cardiologist for a recently noticed heart murmur. She eats well, sleeps well and is advanced in language and fine motor skills, and is catching up in gross motor skills. She gets mouth ulcers.
I recently started to get scared that she had kidney problems as she suddenly had a period of accidents, and her tummy was huge and her belly button stuck out but it seems ok now, and I am aware that I look for things too much. The physio suggested that we go to the GP to rule out things like thyroid and anaemia, but are there any tests that could be done to check whether she has lupus at this age? Would it be worthwhile doing them? Am I just freaking out unnecessarily...?

Thank you,

· Registered
2,444 Posts
The ANA test can be run at any age, but keep in mind that children are more likely to have low false positives though, in part due to the all the viral infections they get and some of the vaccinations can cause a temporary rise in ANA titre as well.

I think I would take it step by step... and ask the cardiologist if the heart murmur could be causing part of her tiredness issues. Then try your GP and have him test the usual suspects and you can ask about testing the ANA given the family history combined with her mouth ulcers and apparent fatigue.

Lupus in a 2 year old is quite uncommon though, and the behavioral things like crying after naps are fairly common in perfectly healthy 2 year olds!

I certainly hope it's nothing - let us know how things turn out please.

· Registered
4,351 Posts

Its normal as a mum to feel very worried about your children! I am sorry that you still have not got to the bottom of things!

I was told my kids could have an ANA test as a starter point just like adults!

My youngest gets tummy bloat quite often, constepation and diarohea - they are going to run more tests relating to iron, B12 and coeliacs disease!

Both iron and B12 deficiencies can cause tiredness!
He also had a heart murmour, but after a scan they said all was within normal parameters and it was an innocent murmour (just the noise and no hole). Lets hope this is the case for your daughter! Please insist on the scan and dont rely on the ECG as they are not 100% accurate and do not show up small problems - but the scan is much more accurate! Google ECG's and you can find out more info.

If youre getting stressed and having an impact on your life perhaps you should consider the tests on offer!

Take care!

Love Lesley

· Administrator
9,117 Posts
Hi Hatty,

My youngest developed a heart murmur at about the same age. The doctor came to the conclusion that she had such a growth spurt that her heart couldn't keep up. After 2 years the murmur was no longer detectable.

I hope nothing serious is wrong.

Take care,

· elisabethm
509 Posts
Hi Hatty my daughter also had a murmur and she grew out of it she is now 34 and never had any bother with it but if you feel so freaked out with it then ask the doctor there is no harm in asking hope you get some peace of mind no one wants anything to be wrong with our children Elisabeth
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