OK yall, I need your help. I've been told it's possible my daughter has lupus. I've been pushing for extensive testing for years. Her ped basically brushed it off & thought I was just overreacting. She's had a Sed Rate in the past that was supposedly OK, but she would never do an ANA. Well, she's been have visual symptoms lately. So, I pushed hard, and she gave in just to "give me peace of mind". I just got a call today telling me that it came back abnormal. Now, they're trying to get her in to a Ped Rheumy at Riley Children's Hospital in Indianapolis.
I have lupus myself. So, I've suspected for some time that something was wrong. I guess I could've pushed hard, but I was probably a bit in denial or didn't want to believe it. Plus, after being treated like I'm nuts w/ my health then my daughters... I guess I got to where I thought "maybe I am nuts".
What do yall know about lupus in kids (tests, signs/symptoms, dx criteria, treatment...)?
Here's some lists
to go on...what I can remember
anyways. Signs & Symptoms Musculoskeletal
Joint pain & popping
Neck hurts to bend
Back hurts to straighten
Muscle weakness (went to ER b/c she could barlely stand up; came back w/ abnormal blood WBC & NA) CNS
Poor concentration Pulmonology
Recurrent upper respiratory infections
Tires easily w/ activity Urology
Bladder infections EENT
Dry eyes CV
Occasional high BP GI
N & V
Occasional mouth sore, sensitive/bleeding gums Skin
Unexplained low grade fevers
Heart murmur Tests
Some sort of abnormal “Newborn Screening” tests; hemoglobin E?
I won't go into family hx. lol
Ya know what burns me the most? The fact that I have been trying to get her ped to listen to me since she was 2 yrs old, but she kept saying everything was fine. So, I took her word for it even though, in the background, I still felt something was wrong. I wish I had listened to my "mother's intuition" more, but more importantly, I wish her doctor had. She has let my baby continue to get sicker & suffer for the past 5 years. I wish they could take her license away for this! Geez, she oughta be ashamed of herself. Instead, she was on the phone still trying to under mind me. Aaaaaaaa!!!
So, anyhoo. Any feedbacks upport is much appreciated!