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)
Stomach pain
N & V
Occasional mouth sore, sensitive/bleeding gums
Skin:
Rashes
Miscellaneous:
Unexplained low grade fevers
FATIGUE
Diagnosis
Asthma
ADHD
Allergies
Sleep Apnea
Heart murmur
Tests
Head/neck CT
Allergy panel
CBC
Sed Rate
ANA (abnormal)
WBC (abnormal)
NA (abnormal)
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!
Sorry all this has happened and don't kick yourself about it! You trusted the doctor as you had good reason to. It's a bummer when time and your intuition prove things different, but it's a good time to start the investigation to help your daughter.
I'm no expert, just a lupus pt myself, but I'd suggest you ask for copies of every lab test your daughter has ever had, whether from the hospital where she was born, to any other hospitalization she's had, to the pediatrician's office. You have the right to have copies, tho you may be charged for them - as I was for copies of my own lab test results. You'll be glad you have a folder of this information as it could be important to have it all in one place someday.
Be sure your new doctor know of the abnormal test results!
Hi, I am so sorry that you have been.., for lack of a better word, bullied by this doc. I, unfortunately, have had the pleasure of being bullied by several docs, they act like they know everything and you know nothing, eventhought it's your life and your experiences and your symptoms..., it's terrible!! I have actually had a doc told me one time that I might as well face it, I am 30yrs old, my health is bad and it's only gonna get worse, so why even try yah, that's what she said, pretty aweful!! I prayed for someone to take her license away, but what can you do, unfortunately even some of the smartest people can be the most ignorant sometimes. Hang in there, be strong for your daughter and don't give up. I will say a prayer for both of you.
Hi, I am so sorry that you have been.., for lack of a better word, bullied by this doc. I, unfortunately, have had the pleasure of being bullied by several docs, they act like they know everything and you know nothing, eventhought it's your life and your experiences and your symptoms..., it's terrible!! I have actually had a doc told me one time that I might as well face it, I am 30yrs old, my health is bad and it's only gonna get worse, so why even try yah, that's what she said, pretty aweful!! I prayed for someone to take her license away, but what can you do, unfortunately even some of the smartest people can be the most ignorant sometimes. Hang in there, be strong for your daughter and don't give up. I will say a prayer for both of you.
Sorry all this has happened and don't kick yourself about it! You trusted the doctor as you had good reason to. It's a bummer when time and your intuition prove things different, but it's a good time to start the investigation to help your daughter.
I'm no expert, just a lupus pt myself, but I'd suggest you ask for copies of every lab test your daughter has ever had, whether from the hospital where she was born, to any other hospitalization she's had, to the pediatrician's office. You have the right to have copies, tho you may be charged for them - as I was for copies of my own lab test results. You'll be glad you have a folder of this information as it could be important to have it all in one place someday.
Be sure your new doctor know of the abnormal test results!
Wishing you and your daughter well - Barbara
Monday, I'm going to be looking into getting copies of ALL her records!
Pediatric Lupus 
