Does my daughter have lupus?

My six (soon to be seven) year old daughter has been being watched by a pediatric rheumie for two years now.  Her first symptoms were hip arthritis when she was five, with very high ANA.  They didn't dianose her with lupus, but took a "lets wait and see" approach.

We've gone every six months to have her blood taken and to have a physical exam.  Every time, her bloodwork is off (her ANA and sometimes her C4...and always her platelets).   They did do the ds DNA and the ENA which were negative.  

She has the malar rash, arthritis in one ankle, photosensitivity, fevers, loss of appetitie, and fatigue.  Her kidneys and liver are fine.  At this point, the dr's started her on plaquenil and naproxen, but said that since she "only has three of the four criteria" they are not diagnosing her with lupus at this point.  They want to "wait and see".  They told us to never let her go outside with sunscreen and a hat.  In other words, it seems like they're giving us all of the advice they would give a lupus patient, but they're not telling us that she has lupus.  Of course, they're not telling us she DOESN"T have lupus.  We're in lupus limbo-land.  Its so frustrating.  Have any of you been in my shoes?  What do you think?

[JustJessica33]

I took me over four years of blood work to FINALLY get a Complete Diagnosis.  Just like your daughter they told me ... Yes you have an auto immune disorder but we can't give it a name till all  the blood results "PROVE IT" at the same time.  It wasn't enough that i have a positive RA and ANA and fit into the criteria, the blood work never showed it completely. YES I HAVE BEEN THERE and I had to make changes in my life without any answers from my Doctors, just GOOGLE and kept trying.  I had to almost force my doctor to give me a standing order for lab work just to make the Diagnosis.  When I was having a "BAD DAY" I would go and get my blood work drawn....just to check what was going on with my blood work.  Even through weekly blood draws the levels wernt there, so in a moment of "genius" or perhaps it was a moment of complete insanity (not quite sure the difference sometimes) I decided to "PUSH MYSELF" into a flare up, I went outside for an entire day, played with my daughters, cleaned the yard, all of it, by the end of the day I hurt so bad i went to bed at eight and could barely get out of bed the next morning, but went to the lab and got poked yet again, and FINALLY all my levels said POSITIVE, not high, not abnormal, POSITIVE... YEAH!  I have RA, Sjogerns, LUPUS and HCV... the Lupus was the last to be Dignosed

TO get to my point.......you really don't need a Diagnosis from a Doctor to know that something is wrong, and even though they want to take the wait and see approach, dont give up, stay positive, and make everyday as wonderful as possible.  You will get the Diagnosis eventually.  

I cant imagine how hard it is for you to ahve to see your daughter in pain at such a young age.  I am a mother also, and I couldnt imagine your frustration.  When my girls get an ear infection I freak out... good luck with your baby, and know you are not alone.  

[Mamma23_01]

Thank you for your reply!  I have finally come to the realization that they must think she has lupus, or they wouldn't have given her the lupus meds.  I can't drive myself crazy about it.  

If she does what you're describing (wears herself out), she is exhausted and a wreck.  So I know the answer.

Thanks again.

[LZFreedom]

Yes, we know ourselves, and as mothers, better than the doctors! I had a rare disease that was a precursor to my lupus dx. with discoid lupus as the primary. It was hard to debate that as I had the sun allergy rashes on my upper arms, between my shoulders, and on my face before I started the plaquenil. Plaquenil was used as an antimallarial in WWII in very high doses, and the dr's found it was a 'mother's milk' for RA... thereby discovering that (I believe) it's the only known med to control the sun allergy.
My heart goes out to you and your daughter!!!! She is so young to be faced with such challenges!!! I was dx at one point with systemic lupus (1998) and later (2005) a Rheumie denied that it was Ever systemic ~ I collapsed in gratitude ~ but the discoid is hard to deny... my once peach complexion is definitely gone; I'm routinely mistaken for a crack head now. ...been very frustrating dealing with that and trying to maintain some modicum of dignity!
For me, I know that my fatigue coincides with my hormone changes every two weeks; I get like Gumby after 90 seconds in the microwave!! I've always been advised to keep up with regular exercise so that I do have some reserves when the waves of fatigue come.
I also avoid sugar, or other 'hi's and lows.
I often wonder about the stories about Aspartame/Equal/Nutrasweet... and the claims of the many medical conditions that can be induced by their ingestion! So many foods have these types of artificial sweeteners in them now. PM me if you want a copy of the article ~ which suggests eliminating all artificial sweeteners for a minimum of 3-6 months ~ as a tool for diagnosis or treatment. This may be a valuable resource for your daughter! I certainly hope so! Blessings of Peace & Healing to you both ~ Woshi.

[tacmom]

I am curious...you said that her platelet count is always off.  By how much?  I know normal is 150,000-450,000.  My daughter has a low platelet count & a low WBC count.  She has been diagnosed with ITP (Immune Thrombocytepenic Purpura) and the main symptoms are bruising and purple pin point dots called petechiae.  My daughter also has a very, very high ANA (1:1240), but has not been diagnosed with Lupus.  She also doesn't quite have all of the symptoms that fit the Lupus diagnosis.  My daughter was 8 when she got the ITP diagnosis and is now 10.  The most common age for children to get ITP is from ages 3 to 5, but most cases are acute and it goes away.  If they have it past a year, then it is diagnosed as chronic.  There are quite a few people who have ITP AND Lupus.  The hematologist is also "waiting to see" if it turns into a Lupus diagnosis because she doesn't fit the classic "ITP" diagnosis with her consistent neutropenia (low WBC).