I'm glad you have found this site as it is a fantastic source of support and advice.
I'm very sory to hear though that your daughter has been diagnosed with lupus at such a young age. It is so difficult for us to see our children suffer and to feel powerless to help them as much as we would like.
I think it is very important to remain positive, both for your daughter and to help yourself deal with this. With good treatment your daughter should hopefully be able to feel a lot better and live her life to the full even if she has to learn to adjust in certain ways.
What doctors has your daughter seen? Has she started any treatment yet? How does her lupus affect her?
Thankfully children are terribly resilient and deal with illness amazingly well. Their attitude to all the things they have to go through would often put us to shame.
bye for now, feel free to ask loads of questions,
Sorry to hear that your daughter has SLE, and I totally understand your initial reaction. My daughter is now 13 and was dx'd aged 10 so I really do know what you must be feeling right now. Give it time...trust me things will get easier.
If you want to know what we went through look under paediatrics and any post referring to "Robyn".
If you want to chat, PM or email me via the site anytime.
Welcome to the site and please let us know if there is any way we can help you with what you're going through right now. It's what we're ultimately all here for... support and caring and information sharing.
Please keep in mind that there are many MANY more people out there that never come to these boards to report how well they are doing, or how well their kids are doing because treatment helps so much that they are out there living full, productive, happy lives & don't have the time to come here!
Children are very resilient, and while lupus often hits them harder at first (especially with kidney issues it seems), this doesn't mean treatment won't help immensely and put it back into remission. It's very possible this will happen for you and your daughter.
Hi, I was diagnosed when I was nine, am almost 18 now (12 days!). The hardest bit for me was social problems, not the disease itself. It's very hard to keep up relationships when you're always sick/tired. But with any luck you'll find the right meds quickly, and she'll be able to lead a pretty normal life
Hi there, and welcome. We are glad that you came here, just not glad about the reason that brought you here. I also think, that if you look under the ""Lupus Site Message Boards" you will go over half way down and will finda section called "Paediatrics" I think you will find a lot of help there. But, remember, you can post under any section that fits your need, and questions are welcome here. I also am sorry for your child, so very young. Is she on meds yet? Let us know, and keep asking any question that you want, there will probably be questions about yourself and how you are doing. Well, we have been there, and we want to help and support you, and keep you informed. Keep posting.:wink2:
I know exactly what you mean about going nuts reading every SLE site on the net! My 10 yr old daughter Stef was diagnosed as SLE two days ago and I feel I have been on the net for at least 30 of the last 48 hours!
I am scared, tearful, fearful, angry, shocked and guilty and feel so bloomin' responsible. I am such a positive person usually and just want to get all this straight in my head and start my daughter coping as best she can. She is putting me to shame and is brushing herself down and tackling the shock head-on. I will be eternally grateful to anyone who can advise and more importantly tell me the feelings I am feeling are normal and things will get better.
How hard it must be to have a child with this disease, I hope that each of you can find special ways to help your children deal with the symptoms and medicne. You will be in my thoughts. Karly:hug: :love2: :flowery: