At three years old my precious daughter contracted Kawasaki Disease... NOW 30 years old and is and has been having a very challenging health-wise life... she is now handicapped and has been tested a million times by a million doctors with a million blood tests! Some of her tests are POSITIVE for Rheumatoid Arthritis / some tests are NEGATIVE! Some of her tests are POSITIVE for Fibromyalgia / some tests are NEGATIVE! Some of her tests are POSITIVE for Vasculitis / some tests are NEGATIVE! Some of her tests are POSITIVE for Lupus / some tests are NEGATIVE! She had the ANA (antinuclear antibodies) test done...the normal is about 39 – hers was a whopping 390 Her doctors just stand and stare at her... not knowing what to do... I’m frantic and would like someone to find some / any answers! ! ! ! Not too long ago when she lived here in Chicago area, she had a saliva test done and it showed that her hormones were way off also. A little history, she had contacted Kawasaki Disease when she was 3 years old from her day-care center that had just completed carpet cleaning. I don’t understand how that relates but I was told it was the only known way of contracting it. She was in the hospital for 2 weeks and was on high dosage (36) of baby aspirin a day… she had lots of testing done at that time (echo cardiogram, etc) and all were OK. My head is spinning… and I haven’t been able to sleep well. My daughter moved to COLORADO (August 2007) and it being so far away I worry even more. I was hoping the higher climate would do better for her sinus (cause we all “thought” that was the problem). While living in Chicago area her entire life, she has had all sorts of allergy testing years ago, she has been repeatedly diagnosed as having acute sinus issues – so much so she was overly medicated with antibiotics – that screwed up her stomach and digestive tract. They tried a million different things to get rid of the sinus problem (from multiple various antibiotics to having the nasal surgery-last year)… “No one” dug deeper and gave her an assortment of blood tests…. for years….. (for a while she thought she was nutz because all the docs here in Chicago said there was nothing wrong). She goes to Colorado – August 31, 2007 and the first doc she goes to gives her all sorts of tests and finds there actually IS something wrong with her… She has had many appointments with various rheumatologists and they have given her multiple blood tests… some come back POSITIVE and some come back NEGATIVE. One doctor said something about “vasculitis”… and it was an off-shoot of Kawasaki disease. I just want someone to CARE.... and to find out WHAT is wrong with her… so we can work on a plan of care… Thanks for listening to me… I don’t know where else to turn...
APS Type 1... A year in review.
kawasaki disease...
I am not a rheumatologist, but I would like to know what medical complaints your daughter actually has at present? Many people have positive titers of ANA and yet lack symptoms related to connective tissue autoimmune diseases.
Kind regards,
Noel Maclaren MD