Hi, just looking for your stories of your children being diagnosed or suspected as having Lupus.
Our story in a nutshell. Is that my son age 5 complained of leg pains on and off over the year, started getting nose bleeds and kept waking in thr night screaming in pain he couldn't locate and needing to urinate.
Fast forward to Thr last two months and he had acute fast onset nephritus. Rash on lower legs, painful hip joint and stiffness, temperature and gross Hematuria and protienuria. Admitted for a week and diagnosed with HSP vadctis, then post strep glomerulonephritis but after 8 weeks still Not going. His urine and kidney function has improved but bloods don't show that he ever had a strep infection. Also his protien levels fluctualate a lot.
He is also suffering with a really Sore nostril and sore tongue and mouth sores. He literally cant eat warm food as it 'stings'.
He is white as a ghost, lost wieght and appetite.
I feel like he could have an auto immune disease which has triggered the kidney issues. And maybe this could be lupus?
The nephrologist isn't sharing much info with us, he is seen every two weeks for obs and then repeat bloods next week. Reviewed end of Jan to see if he needs a kidney biopsy to help diagnose.
Just want to be armed with info as they do rush thru the apps and hold. Back technical info which leave some a bit in the dark.
Thanks x