Lupus

[Shaz22-69]

My 19 year old daughter was diagnosed with having Lupus in April this year. She has had a rough time with ad she has had 2 lots of siezures dangerously high blood pressure anemia and kidney failure. So as a family we have been to hell and back since all this started. I have 5 children the eldest suffers with Arthritis, the second eldest suffers with polysitic ovaries then the 19 year old with Lupus. The younger 2 are ok, but the 19 year old a attitude towards them is vile and I can't cope with it anymore. Can anyone give me any ideas as how we can stamp it out?

[Paul_Howard Partner LUPUS UK]

Hi Shaz22-69,

Have you discussed the attitude problem with your daughter? Perhaps arranging some family counselling sessions could help?

[Shaz22-69 in reply to Paul_Howard]

Hi Paul

Yes we have talked to her about it and she is ok for a day or so then it's right back to the same old horrible vile attitude with them. We have said to her that if she doesn't change her ways with them, then she and her dad will have to move out but like I said changes for a little while.

She is already seeing a counsellor but to be honest I don't think she doing any good. She asks her when does she want to see her again? That's no good with her and they only seem to talk about nothing in particular. Also the counsellor is only around till Christmas!!! Which again is no good. So yo be honest I am at a loss.

[Paul_Howard Partner LUPUS UK in reply to Shaz22-69]

I would suggest that family counselling may be more helpful as it gives you a chance to all air your feelings with one another. Perhaps by focussing on the reasons your daughter is so horrible towards your younger children the issue can eventually be resolved.

How does your daughter feel about the counselling she is currently having? Was it her idea, or was it something that she was encouraged to do?

[abby1649]

Lupus is a frightening disease. She's recently diagnosed and is likely still adapting and trying to understand what is happening to her. I am 62 and have had this for two years. I had the maturity to deal with the feelings, anger, terror and many others. I now feel that I'll live thru this. It was a hard time but I can honestly say I didn't take it out on anyone else. I turned inward and tried to hide how much I hurt from others. But now the meds are doing their job and I feel much better. Maybe she just needs some more time, support from a fellow lupie would help so much and lots of love or as much as you can give from family. God bless you all and may you get thru this.

[johare]

Hi Shaz, speaking to you as a mum, lupus sufferer, and ex school nurse. I very much agree with what's already been said. Firstly the diagnosis is new and debilitating for someone so young. She must feel like there is no way forward whilst her siblings carry on. Also as Paul said was the counselling her idea and sometimes people don't always bond with the first counsellor or maybe her feelings are now coming to the surface which is Scarry. If the counselling is to be stopped speak to your gp. Despite your daughters age you can stress your concerns for her if its stopped. She still needs to see the consequences of her actions within the family to stop resentment. I say this with hindsight as my youngest had anorexia a was very similar. All the best.

[Freckle1000]

I had early onset lupus when I was 15 years old.

I suffered some minor mind changes that with time and lupus medication resolved itself. (Managed 5 years of university)

If she has had a couple of seizures its possible lupus might have effected her neurologically. You might be better served seeing a neuro - psychologist or speak to a Lupus specialist about it.

Also check the psychological side effects of the medications she's on.

I'm 48 years of age now and after years of good health had a recent nasy flare - with cerebral lupus involvent (again).

I became only slightly paranoid from it - but it was enough to lead me to say some really nasty & vicious things to my family. I managed to alienate pretty much everybody when I was at my sickest and in the greatest need of care and compassion.

Now the lupus is under control, I'm mentally back to normal & trying to patch things up with everyone.

Not easy given some of the things I said.

Mild paranoia is hard to pick up on, especially with the additional trauma of life threatening illness and conflict.

All the best. x

ps. Profound apologies if this isn't relevant

but please be careful about what you do and don't say about family members donating a kidney.

I have psychological scars from this issue that will last a life time.

[Cookiecutter76]

It may well not be relevant as I don't know what meds your daughter's on, but medications can sometimes cause mood changes. These are often recognised side effects but we're all different and sometimes bad reactions occur that aren't to be expected and sometimes doctors can be very slow to recognise them.

Like I said, may not be anything to do with it but it's worth bearing in mind.

Good luck!

x