Anyone with young children with lupus?

Last year my daughter who is 6 was diagnosed with cutaneous lupus. She takes 200 mg of plaquenil 5 days a week. Other than the butterfly rash that she initally had, she pretty much has no other symptoms just yet thankfully. Her ANAs and Ro and La are high.  We keep her with spf 70 every day (many times a day) and keep her shaded at all times. She did break out this past November when we visited Disney, but the rash went away in about a week or so. 

I know that lupus is an extremely vague disease and varies from person to person. It also seems to be very rare to have a child so young with lupus. I'm looking to see if there is anyone else out there with children this young with lupus and what you have experienced?

Thanks so much!

Jessie

 

Hi Jessie,

I was diagnosed with lupus when I was 13 (I am now 26). When I was first hospitalized for it, I shared a room with a little girl that had it also (we had the same doc) and she was around 5 or 6. I also had the butterfly rash, swollen ankles (i have lupus nephritis), eyes, hands, and very dramatic weight loss. What kinda meds is your daughter on, if you don't mind me asking.

I know how hard it is for you. I saw what my mom went through when I was sick. And I don't wish that on any parent, especially since, when a child gets sick the parents always wish it was them instead of their children. I know that my mom kept a lot of things from me when I first got sick because she didn't want me to be any more upset than I was. And I understand her reasoning and I never thought she was wrong in doing that, heck sometimes I wish that it was like that again. Some of the things that the docs tell me know I really don't wanna know. But here is a little bit of advice that I can give. Start a medical binder for her, that you keep for yourself. Include things like the meds she taking and when she starts them, and when she stops them, or any meds that are added. You may also want to start keeping dates of hospitalization, surgeries, any tests or scans she gets done, (you can always request a copy of the report form your doctor, copies of blood test results, any other diagonses and their dates, and her docs previous and current and their addresses and phone and fax numbers. I know it sounds like a lot but trust me, if she gets to be like some of us, she may be seeing more than just a few doctors and if you have this information handy it will help you tremendously especially for new patient appoints.

From what I have learned from lupus research and books is that cutaneous lupus is the less serious of the three types (discoid, systemic, and drug-induced). I also remember reading that most of the time the most serious cases are the ones in where organs are involved. But please don't quote me on this. If you are interested there are actually many books on lupus and I am sure you can find one that your daughter can read.

Good luck to you and your daughter, and please if you need to talk or anything my email address is on my profile. Your little girl is in my prayers.