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Bonita
04-04-2013, 11:18 AM
my grandaughter who is 6 years old is going through tests for this diease. her mother tests positive for it and her moms dad died from it but he did not listen to the doctors and died from complications and me being her grandma and have it. I just wondered if any of you have small children with it thanks so much

steve.b
04-05-2013, 01:05 AM
according to the experts ????? .....
about 2% of lupus patients have a hereditary component.

according to most of our family on here......
the percentage is much much higher.

i have no parental history of lupus.
but my father and sister both have other immune disorders.
my daughter now has been diagnosed with aspergers.
and she is complaining of "growing pains"

tgal
04-05-2013, 07:10 AM
I don't but they are watching my daughter and have been for years because she displays the symptoms. I know the fear and heartache. I am here if you need me

Bonita
04-06-2013, 11:15 AM
Thanks Mari her tests for lupus and lyme diease came back negitive and now they are doing blood work again because her sed rate was almost triple what it should be. Both her and her brother complain of joint pains

deannegirl
04-12-2013, 12:45 AM
I have Sle, my mom has Sle and autoimmune hepatitis and more than a dozen extended family members have other AI diseases. However just like you my biggest concern is my 11 year old daughter. She has been either in the single digits in height and weight or below the growth charts all together her whole life. She's had digestive problems, migraines starting at 6 years old, unexplained rashes and fevers and the all too common "growing pains" that keep her up and night and bring her to tears every few weeks. It's tough because last year we ran a full blood panel and her kidney numbers were slightly elevated, her sed rate mildly high and her ANA was 1:640! But even with all of that her pediatric rheumatologist refused to diagnose her and just said for her to come back in a year to be rechecked. I'm hoping so desperately that she doesn't have it...the guilt I carry of unknowingly potentially passing this horrible disease on to her is so painful. I would do anything to spare her from it. All I can do unfortunately is feed her the best nutrition, keep her well covered in the sun and just hope. Hang in there and keep us informed, were all here for you.

ButterflyRN
05-07-2013, 12:10 AM
I was diagnosed when I was 11. My symptoms started at age 10. They only genetic components I had at diagnosis was my grandfather had RA, my cousin had ulcerative colitis and my aunt has hypothyroidism. Many years later after my diagnosis both of my parents have been diagnosed with ulcerative colitis! So I guess there's my sign LOL! Now I tease my parents and say I can finally blame my disease on them! Even thought I don't blame them really at all!
Please keep us posted on what the results show. What type of symptoms is she having? I had a lot of symptoms that mimicked mono ( fatigue, swollen lymph nodes, low grade fevers) then later developed swelling of my eyes and closer to diagnosis developed fluid overload in my lungs, abdomen and around my heart. I also had to have a bone marrow biopsy prior to diagnosis to make due it was not a childhood leukemia.