LUPUS UK
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Help with teenager please

My 18yr old has been ill for 2 years. Initially it was stress, related to bereavement then the usual fobbing off with virus/tonsilitis/ME. She tested positive for Glandular Fever last year but still isn't well. She has Reynauds, headache, light sensitivity, sore throat, joint pains, fatigue,lethargy... GP has been treating her for depression since January as she was suicidal. The depression is responding to treatment but the physical symptoms are persisting. As I have Lupus I requested a Rheumy referal. He took an arm full of bloods (results not back yet) arranged circulatory tests on her extremities and decided her joints were hypermobile. He actually dislocated her wrist in clinic! She has had to leave college (she was doing A levels) and actually got a job but couldn't manage due to illness. What can she claim as JSA is actually for job-seekers. All she does at the moment is lie on the settee in the dark and is very emotionally dependant on me. I can appreciate how she feels as I have Lupus but some family members keep saying she should pull herself together! Are there any teenagers who can empathise with her, or parents who can advise. I really am at the end of my expertise.

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Hi,

Whereabouts do you live? If your daughter is able to get to London then I imagine she would be welcome to come along to the young people's support group at UCLH. It might be a good opportunity for her to meet other young people with similar experiences. Let me know if you'd like more information.

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Hi there, my young daughter aged 15 has systemic lupus and hughes sydrome, I live out in the sticks, but keep her fully motivated with friends, school and anything I can think of... however she is benefiting from taking Plaquenil via St Thomas' is she on anything like this?

Mary F, wishing you all the best.

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We are in Manchester, Paul.

MaryF, we are still waiting official diagnosis so she is not on medication. Has the plaquenil made a difference to your daughter? The only thing at the moment that makes my daughter happy is musical theatre! Most of her friends are still doing A levels but a few have kept in touch.

It's wierd but I want a diagnosis even though I don't want her to have Lupus cos at least there will be treatment

Thanx for replying x

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The Plaquenil has made a huge difference but it is slow to work you have to be patient with it, how awful for you...hope things improve.. keep her up with anything at all which makes her happy and build on that.. my youngest child is ill also, so I understand the score! Also as the diagnosis starts to flow, check vitamin D levels, also iron and B, despite the fact we eat no junk and I make everything, and also oily fish pills and oily fish eaten her vit D was flat.. that makes a hell of a difference. She also takes Q10... I know diet is not everything, but it is important that they help you with that. Mary F x

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Hi Dalediva

There is a great lupus UK support group in the North West, of which I am a member myself. We have a private facebook group which you, or your daughter, can join. Search for North West Lupus Group in facebook, & request membership.

I am sure I have seen young ones, around your daughters age, posting on there. Hopefully she would find someone she could connect with, & who would help her as she progresses towards a diagnosis.

There is lots going on in our area, & this would be the best place for you to find out about events & meetings.

I hope this helps. X

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Thanks Roobarb, will look at that. :)

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My daughter got Lupus at 17 (now 20). It was terrible for a while, but once it was diagnosed (about 3 months), then the Hydroxychloroquine kicked in (another 3 months), she started improving. She also made significant diet and lifestyle changes (e.g. stress management - A levels nearly killed her!, gluten free, vegan, yoga, etc.) and now feels back to pre-Lupus health, apart from the odd flare for a few days (she also burns the candle at both ends when she's 'up', so a couple of days of exhaustion are the penalty for that).

Two things she found that particularly relate to your daughter - one is that when she stayed at home 'being ill' she felt worse and worse, but when she managed to drag herself to college or see friends, even just for a few hours, she felt much better. The isolation exacerbated her feeling rotten - getting out, doing things and seeing friends is literally part of her 'cure'. She's now at Uni in Edinburgh and if she feels bad, she'll still try to go out, even if it's just to sit in a cafe and read a book rather than being on her own in her flat, as being around other people helps to lift her symptoms.

The other thing is that one of the main symptoms of her flare-ups is depression/low mood. Sometimes she feels exhausted and unwell and wonders if it's a flare or not, then notices she wants to cry all the time which seems to be the main difference between a Lupus flare and any other sort of feeling grotty (and obviously Lupus fatigue, like ME, is different from normal tiredness).

Hope that's of some interest.

Really good luck and take heart - I thought my daughter's life was over (and became very depressed myself for quite a while), but thankfully I couldn't have been more wrong. She now embraces the Lupus part of her rather than fighting it - it is part of who she is and has helped her be empathic, tolerant, flexible and learn some diet and lifestyle lessons which most of us don't learn until much later. So she is thankful for it!

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