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:

Clumsy/coordination problems
Behavioral issues
Memory problems
Poor concentration

Pulmonology:

Recurrent upper respiratory infections
Tires easily w/ activity

Urology:

Bladder infections

EENT:

Dry eyes

CV:

Heart palpitations/arrhythmia
Occasional high BP

GI:

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!!! :mad:

So, anyhoo. Any feedbacks upport is much appreciated!

If you were so sure something was wrong, why in the world didn't you take her to another doctor????????????????? You know your child better than anyone and if you really suspect something is wrong, then it's up to YOU to get her to a doctor that will listen..........there are plenty out there that will listen..........now I would get her to one and forget the one you're using.........she had her chance and now she needs to be seen at a children's hospital...........who practice nothing but children's med problems............

If you were so sure something was wrong, why in the world didn't you take her to another doctor????????????????? You know your child better than anyone and if you really suspect something is wrong, then it's up to YOU to get her to a doctor that will listen..........there are plenty out there that will listen..........now I would get her to one and forget the one you're using.........she had her chance and now she needs to be seen at a children's hospital...........who practice nothing but children's med problems............

Well, I had NO proof, and I had dealt with doctors like that for so long that made me question my own health that it started to kinda take affect. I've wanted other docs in the past for me & her but was unable to b/c of Medicaid. Her doc even said she wouldn't send her to a rheumy if the test didn't come back positive. Even though she had sign & symptoms. At least, she is sending her now. She's a ped, so she is a specialist. She's just NOT a good one! I'm already in the process of finding her another one. I hope I pick a good one.