I haven't been on the board in a long time. I have CNS Lupus. I am the mom of 4 kids. I was an Oncology Nurse and I am now on disability.
My kids were all screened due to my illness. My 7 year old daughter had a slightly positive ANA in the fall. It was 1:80. She is also HLA B27 positive, like myself.(All of my kids are all HLA B27 positive.) Michaela(my seven year old) also had arthritic symptoms,pneumonia, fatigue and chest pain this past fall. Here second ANA went up to 1:160. All ANA were a speckled pattern(mine are too).
She also had partial vision loss in school-scared me cause that is how my vasculitis presented itself!! We had her checked out by a rheumatologist, neurologist, opthamologist and cardiologist. She had a MRI/MRA of her head. Her MRI/MRA was normal. Her blood work was fine execpt the HLA and the ANA. Her eye exam and cardiac exam was normal. Her EEG was normal(no seizure activity.) She does not have anticardiolipins like me.
So, now she is being monitored by a rheumatologist every three months just to "keep an eye on her". We had blood work done a few weeks ago and her ANA now is 1:640!! I was alarmed, but the nurse said it wasn't cause for concern. That they have patients in the 10,000's for ANA's(Yeah, in the hospital!!)
When I researched children's levels for ANA's, anything over 1,000 is considered a positive marker for lupus. Under 300 is considered a low number and no need to worry.
Is there anyone here with experience with kids and autoimmune disease? I am at a loss. I just keep monitoring her for symptoms and she goes back again in august for more bloodwork.
I am just so scared. I couldn't bare it if I passed this horrible disease onto my baby girl.
Mono 1986. Diagnosed Brain Vasculitis August 2005. CNS SLE September 2005, Possible seizure disorder.
Currently on Prednisone 2.5 mg, Cellcept 1500 mg, aspirin 83 mg, Topamax 25mg Am and 50 mg PM, Calcium with vitamin D, multivitamin, Allegra, Prilosec, Flonase, Celexa, temazepam for sleep.
Mom to Joey 16 (diagnosed with PDD 1995), Kelsey 13, Michaela 6, and Mitchell 4 (diagnosed with Port Wine Stain left arm at birth and scoliosis at 1 year old.)