Hi smjohnri, I'm sorry to hear about
all the worry you are going through with your kids, and especially with your daughter. My son who is now nine has had a lot of health problems for about
two and a half years now. His started out with a case of mono that he never seemed to recover from. So from there, he had an ANA done due to family history. His bloodwork showed a slightly positive ANA, and elevated sed rate and anemia. His symptoms sound a lot like your daughter's - he had arthralgias (sp?), fatigue, headaches, chest pain, frequent pneumonia, and frequent strep. There have been plenty of times, especially this last year where his pain was so bad I had to help him up out of bed, help him walk, and help him get dressed. We saw a pediatric rheumatologist who initially thought my son had some form of juvenile arthritis, but was never sure because not all the pieces fit together. Over time, it was discovered that my son frequently had extremely high levels of strep anitbodies and we didn't know because he doesn't present with normal strep symptoms. So, just recently he was diagnosed with post strep reactive arthritis and we are trying long term antibiotic treatment while still treating the arthritis with NSAIDs. We have no idea if the arthritis will end up being chronic or if there is some autoimmune activity in addition to the reactive arthritis. I guess only time will tell that.
I do know how worrisome this can be, especially when you know what these autoimmune diseases are like. It's hard enough to live with them as an adult, but our children should not have to deal with anything like this - they should just be able to be kids.
Is your daughter seeing a regular rheumy or a pediatric rheumy? If there's a pediatric rheumy anywhere near you, I'd recommend seeing one, since some of these diseases present a little differently in kids.
Hang in there. I know how hard this is. I also have a 5 yr old daughter and anytime she complains about
fatigue or says her knees hurt, my heart skips a beat and I can't help but worry. So far, she is very healthy though. Please let me know if you have any other questions. I don't know if I can tell you anything you don't already know, but I can at least share my own experiences with you.
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; Amitriptyline 25mg; Neurontin 200mg; Prevacid; Steriod Cream and Mouth Rinse for tongue and mouth ulcers; Hydrocodone 5/500 prn for severe pain; Restasis eye drops
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