Anyone with young children with lupus?

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New Member

Date Joined May 2008
Total Posts : 11
   Posted 5/30/2008 2:00 PM (GMT -6)   
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!

Regular Member

Date Joined May 2008
Total Posts : 57
   Posted 5/30/2008 9:27 PM (GMT -6)   
Hello I just wanted to let you know that Im 15 years old and I have been dealing with Lupus. I know I am not as young as your daughter but it is very rare for children so young to have Lupus. I experience symptoms such as fatigue, joint pain, and I also have raynauds. I hope everything is going okay with you and your daughter I know it can be tough. If you would like any further information my mom is willing to write you.  
Medications: Prednisone 20mg. Plaquenil 200mg. Naproxen (for pain). Multivitamin. Calcium and Vitamin D. Fish Oil.  
15 years old. Lupus, Raynauds, and Hashimotos.

Regular Member

Date Joined Oct 2003
Total Posts : 262
   Posted 6/1/2008 1:32 AM (GMT -6)   
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.
Hugs and prayers,                      If it was easy being a lupie, 
   ~Suzanne~                                      the whole world would be one     
diagnosed in May '95 with lupus nephritis, hypertension, hypothyroidism, avascular necrosis (knee) '98, kidney transplant April '06, pseudo-tumor cerebri '07, AVN ankles and hips '07, depression '07
prednisone, cellcept, prograf, lopressor, allopurinol, synthroid, diamox, OsCal +D, melatonin, celexa, pepcid, oxycontin for pain

Veteran Member

Date Joined Jul 2005
Total Posts : 5403
   Posted 6/1/2008 7:53 PM (GMT -6)   
Hi Jessie. I responded to your other post about being new - so you can read more from me there. I have a son who is 10 now who got sick when he was 7. Docs still aren't sure if it's a lupus type connective tissue disease or if it is juvenile arthritis. We don't have a really good pediatric rheumy in our area, so we are thinking of making an 8 hour trip to Chicago this summer to see one. We do have a great pediatrician though.

I'm glad you found the forum and feel free to ask any questions you have. I know how hard it can be to have a child who has a chronic illness.
Diagnosis:  UCTD (lupus) 2006; Raynauds 2006; Sjogren's 2006; lupus symptoms began 2003; CFS 1991; Mono 1985
Meds:  Plaquenil 400mg; Prednisone 5-10mg; Tramadol 100mg 3-4x daily; Doxepin 25-50mg; Prevacid; Evoxac; Steriod Cream and Mouth Rinse for tongue and mouth ulcers; Hydrocodone 5/500 prn for severe pain; Artificial tears



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