Questions from a Parent - Lupus Message Board

Wraith · 06-15-2001, 07:23 AM

I have a daughter, now 10, and her pediatrician suspects she has lupus. At age 9, she began having the swelling and joint pain in her ankles, elbows, wrists, and knees. The pain and discomfort was always migratory. Her ped. did blood work on her - she suspected either rheumatoid arthritis or lupus right from the start. The ana was pos. (speckled), the rheumatoid factor was neg. She sent her to a ped. rheumatologist, and they found the same blood results, but her symptoms were clear when she was there. She went to a regular rheumatologist, and he noted splotchy skin, and something on her fingernails and possible pointers of lupus.
She is now under the care of yet another pediatric rheumatologist, who has found the same lab results. Whenever we have an appointment, her joints seem to be fine at that time, a few weeks later they become inflamed again. This is maddening for us, and frustrating for a 10 year old as well.
She seems to be doing okay at the present - we have modified her diet and exercise, which is helping.
What is the "normal" coarse of action for this disease?
Thanks!

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Dave

DeeDee · 06-15-2001, 12:53 PM

Hi Dave,

Sorry to hear about your daughter's problems and frustration (and your family's as well!) It is good that she is being thoroughly checked out at such a young age. I am soon to be 30 and just over the last few months has anyone ever mentioned the possiblity of lupus to me. I have had symptoms all of my life, but no one had ever linked them together. They missed the boat on SO MANY occasions, but this one really gets me: when I was about 8, I had SEVERE fatigue. Ped. said my spleen was also enlarged (both of these can result from lupus). He ran a test for MONO, which came back negative. He said he thought it was mono anyway! Now how often do we hear of 8 yr old getting mono,...Geez.

Unfortunately, this illness is very individualistic; there really is no set course for it. There may be certain tendencies, but most of what I've read says it is unpredictable in its cycles of flares and remissions. Also, there is no way to tell if a person is gonna keep the symptoms they have, experience new ones, or both.

I know this is very discouraging, but at least it isn't set in stone to be a life-long nightmare. Many people have very mild cases with long remissions. I pray that this is the case with your daughter.

Please feel free to post questions, comments, or frustrations anytime; it may take a bit for someone to get back to you, though. We tend to get very tired and achey (as you know!) Take care and good luck to your daughter DeeDee

Ann S · 06-15-2001, 05:54 PM

Dave,
I agree with DeeDee....there really isn't a normal course. I suggest you do some research on the internet about autoimmune diseases to help understand them better. Also, doing the research is important because your daughter may be having symptoms that she doesn't even know are related (share what you feel is relevant with her, without scaring her). Check out numerous diseases cause a lot of the symptoms overlap, which is another reason for the difficulty in diagnosing them. Another coommon factor is that you may have something for a long time before blood tests show positive. Also, there aren't specific blood tests for all the AI diseases, sometimes they have to rely on symptoms, history, etc. to form a dx. Ask her to keep a brief daily journal of how she feels so you can bring this to the Dr. too. Many of us experience the problem of 'disappearing symptoms' when we go to the Dr. Too bad Doctors appts. aren't free, they seem to provide better symptom relief than any meds they prescribe.
Was your daughter's thyroid ever tested? There's an old post (Feb. or Mar.) on this board by READY who was a 16yr old who was exhibiting symptoms of Lupus. It might be useful for you to read.
How did you modify her diet & exercise to get some relief?
Feel free to come back to ask questions, share frustrations, or whatever........just be patient while waiting for responses. I'll keep your daughter (& family) in my prayers and will be waiting to hear how things work out for her.
Ann