u/COFFEEEE85

Hello. I am not looking for a diagnosis, just maybe some advice and guidance on what to do next. (How to advocate for my daughter)

My daughter (just turned 10) experienced an influx of symptoms last year, and we were sent around to different doctors for tests. Aside from her pediatrician, we saw a nephrologist, endocrinologist, and dermatologist. Her + ANA points more towards scleroderma, but her symptoms and other tests point more towards lupus.

Here are the most notable test results:
ANA blood test 1:160 centromere
Anti-centromere antibodies-46/positive (high) (blood) 3/2025
Elevated creatinine .55 (blood) 1/2025
Proteinuria 3+ (urine) 1/2025
CBC- Hemoglobin 14.2 (high), Hematocrit 40.3 (high), MCHC 35.2 (high), RDW-CV 11.9 (low)

Why we took her in to begin with:
Shad a molluscum bump on her leg 1/2025 (about a year ago). We took her to a dermatologist and it was treated both with cantharadin and tretinoin. May have triggered an immune response.

Signs of possible UTI- took her in, no bacteria or UTI, but protein was spilling into her urine. Retested a few weeks later, same results.

She also was out in the sun all day on Spring break in 3/2025, and the next day she woke up with raised, bumpy, redness on her face (not a typical malar redness), and slightly on hands and back. She also was exhausted. That’s when all the blood tests came in. (She was negative for Fifths and other common ailments)

During the following weeks, the redness and bumps slowly resolved, but we got the + ANA and some other possible symptoms and kidney involvement. The doctors basically told us it’s a wait and see, this could have been a flare. Nothing they can do or diagnose.

Now almost a year later- Yesterday she came home from school after being out in the sun all day for field day. She was extremely fatigued and seemed out of it, (brain fog?) She napped for 2 hours and only got up because I kept checking on her and woke her. She did appear to have malar redness. Still waiting on her to wake up today to see if anything changed.

My question is- how can I better advocate for her? What testing can I request to get on a better path to finding her diagnosis?

Hello. I am not looking for a diagnosis, just maybe some advice and guidance on what to do next.

My daughter (now 10) experienced an influx of symptoms last year, and we were sent around to different doctors for tests. Aside from her pediatrician, we saw a nephrologist, endocrinologist, and dermatologist.

She had so many tests done, here are the most notable:
ANA blood test 1:160 centromere
Anti-centromere antibodies-46/positive (high) (blood) 3/2025
Elevated creatinine .55 (blood) 1/2025
Proteinuria 3+ (urine) 1/2025
CBC- Hemoglobin 14.2 (high), Hematocrit 40.3 (high), MCHC 35.2 (high), RDW-CV 11.9 (low)

Why we took her in to begin with:
Shad a molluscum bump on her leg 1/2025 (about a year ago). We took her to a dermatologist and it was treated both with cantharadin and tretinoin. May have triggered an immune response.

Signs of possible UTI- took her in, no bacteria or UTI, but protein was spilling into her urine. Retested a few weeks later, same results.

She also was out in the sun all day on Spring break in 3/2025, and the next day she woke up with a raised, bumpy, red rash on her face, and slightly on hands and back. She also was exhausted. That’s when all the blood tests came in. (She was negative for Fifths and other common ailments)

During the following weeks, her rash slowly resolved, but we got the + ANA and some other possible symptoms. The doctors basically told us it’s a wait and see, this could have been a flare. Nothing they can do or diagnose.

Now almost a year later, she came home from school after being out in the sun all day for field day. She is exhausted, taking a nap (has napped since she was 3). No fever, seems clammy. Pushing water and watching her for now.

My question is- does this look familiar to any of your stories? The test results and symptoms pattern? I want to do whatever we can to help her and prevent her from feeling like this, but without a diagnosis it’s so hard. Thank you.

Does this mean I am giving 2 hours total on all apps, YouTube not included, and only 15 on YouTube? Or is YouTube also included in the ‘all apps’ category so I gave an EXTRA 15?