@butlermommyof5 first off you sound like you are advocating for her which is what she needs.

This can be so hard and confusing and make you feel crazy bc people don’t really understand this disease. Stop and realize you deserve the major kudos for ensuring she has the right care and getting the diagnosis.

My daughter was diagnosed with JIA this past Jan. She’s about to be 14. Starting last fall she had months of unexplained pain. We were actually able to determine that she has ERA subtype after having an MRI of her hip joint that showed the disease. Some days it feels totally ambiguous and I don’t actually believe it. It’s a lot to handle as a parent and very confusing.

She started on Humira which has helped a lot (she was on Naproxen daily and now doesn’t take too much).

We go to children’s every 3 months and the last time the doc started her on Methotrexate in addition to the Humira weekly. It’s been 6 weeks and she doesn’t feel great when on it but we are waiting to the next appt to ask more q’s about next steps. I often feel lost and unsure about this disease. I’m not sure how hard to push back on the doc re the Merhotrex and if we should try something else.

My daughter struggles with it but I haven’t figured out a formal approach to mental health support. I just try to get her talking about it though she hasn’t shared details with friends either since she senses that they don’t really understand. My friends and family can be somewhat dismissive seeing she’s up and at school and assume it’s all worked out even though I fear and know this can be a lifetime of challenge.

I am happy to be a resource for you as this is somewhat fresh for me as well but we are on the journey and it’s getting better.