Welcome new member Olivia's mom

I hope it's okay that I started a new topic for you.   That way more people will hopefu,ly see it and respond. Olivia's mom said... I am very new to this site...I joined a site a couple of years ago but can't remember if it was here or not and never received a reply. My daughter, Olivia, was diagnosed with discoid lupus two summers ago when she was 5 years old. She had sores on her face and hands that the dermatologist could not diagnose. She did some research and came up with discoid lupus and sent us to get a "finger punch", blood drawn and to see a rheumatologist. Long story short, after 1 year of sores, she was diagnosed. Everything I have read says it is very rare at this age. Her doctors have not treated anyone this young. I am having a hard time finding a support network that knows about this disease in this age of child. She is now 7 and has siblings 7, 8 and 9 that love to hang out outside but she has really become an indoor girl. She knows the sun is bad for her and slathers the sunblock on every day! She tried plaquinil but that was hard on her tummy. She went to hydrochloroquine but that didn't do well either and is now on chloroquine and that has been great. She uses loquoid and elidil on breakouts and those really help as well. She has had a great past few months...just a couple of little breakouts that the loquoid has taken care of!! (Along with the chloroquine). She still has lots of scarring on her face from the first breakouts--we try myderma for kids but it isn't working so great on her little skin. Any ideas? We are blessed that it hasn't been worse...but we'd love some more information from people who have been in the same situation as us. Thank you for your time in reading this and for any replies! I'm sorry that your daughter has been through so much at such a young age.  My son has juvenile arthritis and possibly connective tissue disease (same family as lupus) and his symptoms started when he was 7.  It's so hard to watch your child suffer. Please let us know of any questions you have and know that we are here for you through the rough times too.  I'm glad you joined us.

Hi Olivia's mom,

 

Welcome to the forum. I don't have much skin involvment with my lupus, so I don't have much for you in the way of advice or ideas.  Did she ever try prednisone?

 

It sounds like she's a very intelligent girl who knows what is not good for her (being in the sun).  I"m encouraged for her that she is so responsible about putting on the sunscreen! 

 

talk with you soon,

Ginny

Hi Olivia's mom,

I think I responded to you too on another posting, but wanted to make sure I welcome you to the forum.  It is a great place, and a host of information, knowledge, wisdom, and how to.

I would much rather have Lupus myself than to have to deal everyday with my child having Lupus.  I can't imagine how hard this must be for her and for you and your family.  Hopefully it will go into remission and give her some relief.

I admire your strength and courage.

Hester