my daughter is struggling

[smurfette]

my daughter has sle and von willibrands disease and shes 16. shes become so emotional and finding things hard to deal with, shes finding school really difficult and feels that she cant retain information. im not sure what to do to help her and was wondering if anyone else gets really dark days and if so how do you cope with it

[Cariow1]

Hi .. My Son is 15 and has SLE. He was diagnosed a year ago and missed most of Year 9 .During that year his mood hit rock bottom as he struggled to cope , and the odd times he attended school he too found it difficult to retain information, and dealing with school life . I got him referred to CAMHS and it was the best thing . They have been brilliant working with him and attending school to put things in place to help him. The School Nurse has been fab too. I am a nurse but really found it difficult as his mum watching how he was struggling and it got me to the point of dispair ,I felt utterly helpless and getting professional help was the turning point. He has started year 10 in a more positive way and uses all the things he has learnt to cope . It is so hard for teenagers as they are emotional at the best of times , then to deal with an illness that lives with them everyday is a real pressure that most of their friends will never experience . I hope you can get similar help with your daughte, it must be really hard for you both and I really understand how you are feeling . If you want to chat more feel free to personal message me . Take Care x

[Nanuuk]

CAMHs diagnosed my son with OCD when he was in yr5 & did some 1-2-1 sessions with him. He, myself and his teacher were horrified at some of the methods they used & we modified tbe diary keeping with teachers help. I have SLE & am a single mum, he is my carer. Primary jigsaw was as much use as a chocolate teapot - he didnt respond well to it cos they talked down to him & were patronising but hes in yr8 now & school have been invited him ti take part in 2ndry jigsaw which focuses on coping with change, dealing with emotions. Is there anything similar your daughter can acces? Also will school allow extra time in her exams? If Id had my diagnosis while at school that would have been a big help - extentions for ciursework deadlines too if that applies to your daughter. Exam stress cant be avoided sadly but educating school to signs, symptoms & everything else to do with this confounded debilitatibg illness & how its affecting your daughter so school can minimise stress & support her is a must. Gentle hugs to you & your daughter.xx

[megs_tom]

Awww sending big hugs to you and your daughter. I don't have any advice to give regarding how to cope apart from for your daughter to pace herself. I too have trouble retaining information, and spelling etc has become a problem recently. This is not helpful when I am just about to start my 4th and final year at university! But just got to plod on with it! Take care xxx

[Paul_Howard Partner LUPUS UK]

Hi Smurfette,

Hopefully we can help a bit. In the past couple of years we have been running a support group specifically for people aged 16-24 with lupus. Your daughter would be more than welcome to come along.

We may also be able to help at her school if she needs an advocate to speak to the staff?

Send me an email at [e-mail] and direct you towards some more assistance.

Paul

LUPUS UK