We were told last Nov 09, that our young 9yr old daughter possibly has mixed connective tissue disease. Her blood tests are ANA >2560 Speckled, RNP Positive, +protein in urein, low white cell count 4.0, rheumatoid factor 23H.
Have only a tiny understanding of what these mean, does the above mean its going to be a life time condition?
Obviously we want to fix this but appreciate the problem of miss diagnosing and giving the wrong drugs.
The blood tests were taken because she was getting re-ocurring ear infections and painul Parotitis (Parotid gland) infections in both cheeks. That was treated with a 6 week course of Staphylex Flucloxacillin and the infections went away, but still left us with these strange blood results.
Our Immunologist Doctor gave her the vaccine Pneumovax 23R, to help her immune system. Was that a good idea??
Then she was put on a mild course of Bactrim (Sulfer based) but reacted badly - red rash all over body, fever, vomitting, shakes, she ended up in hospital for a short spell to recover included taking prednisolone for a couple of weeks.
A month or so later she has started ramdomly suffering with painful skin, mostly in her feet. Sometimes both which means we need to hire a wheelchair, usually just one foot suffers. Symptoms are she can't bear anything to touch the skin from ankle to toes, when it gets bad the skin puffs and sometimes turns blue, also gets very itchy. Getting her to move around on crtuches and rotate the feet helps but of course this hurts and is only done for short periods. Mostly this problem only lasts for a few days then she wakes up and is all better for a couple of weeks until the next flare.
Mild dose of Naproxen medicine was tried when she was having a bad month with her feet. But again we ended up in hospital with reactions - rash, fever, vomited, shakes. Didn't need steriods that time.
Currently shes only taking fish oil tablets. Immunologist Doctor suggests waiting and see what shows/happens.
I've read alot about possible causes being viruses, guess thats why she was originally given a mild long term course of antibotics. Should we try another low dose antibiotic (not sulfer based) to kill this bug that might be causing her problems ?
We have really noticed that stress plays a major contributing factor in bringing on the foot skin problems, yes somehow a 9 yr old gets stressed. ie: when she worries about one paticular school teacher or issues with little friends.
Really appreciate any info, websites, advise and answers to these above couple of questions.
Have you heard of anything similar in anyone so young?? Are these symtoms sounding like she has a particular autoimmune condition like Fibromyalgia ?