Granddaughter and diagnosis

My 14 yo granddaughter is in the process of being diagnosed w/ an autoimmune disease. It started in Dec when she had her tonsills removed and the dr had problems getting her to stop bleeding. He felt that there was a problem, possible bleeding disorder. We took her to U of Mo Children's Hospital and began seeing all of the "ologists". Started w/ pediatric hemotologist/oncologist. Results..no bleeding disorder found but Fanna (sp) test was 1480. She felt it was possibly lupus and sent us to the pediatriac rhuemotologist. Now this lady was a total joke. Numerous appts. God knows how many different blood tests. Plus sending us to every other specialist that there was. She has all of the signs...migrains, dry skin, butterfly markings on her skin, joint pain, etc. This specialist did NOT give her anything for inflammation or pain. We are now taking her to Cardinal Glennon Children's Hospital in St. Louis. Once again they wanted to run all of the tests. They had her fast on Wed and drew 25 viles of blood on Thurs plus urine test. She passed out. Scared the heck out of all of us.

This is a young lady that has played competitive soccer and softball for 8 years. She ran track. She was a straight A student. She now cannot participate in any of the sports. She missed almost the entire last semester of school. She would go for 2 days and then be in bed for 3.

I don't understand why it takes so long for them to find out what this is. She is in 2 different medications. I will have to ask my dd what they are. She was in so much pain yesterday, her hips, knees and legs, that she had to crawl up the stairs.

Can any of you give us some insight as to what we can do to help her. What questions to ask when we go back on the 17th. Anything that will help w/ t he pain?

Thanks for your help.

Deb

Lupus can be very difficult to diagnose.  It is important to find doctors who are experienced in diagnosing and treating auto immune diseases.  There are also other diseases that can produce similar symptoms and every case of lupus is unique....no precise presentation. 

My case was susected as lupus but it took about 10 months to get a firm diagnosis and within 2 months my doctors diagnosed mixed connective tissue disease which includes lupus.  Diagnosis is not easy and I know people who went through diagnosis hell for a much longer period of time.

It would seem logical that your granddaughters doctors would start a treatment with prednisone to alleviate the symptoms if they are that severe.  And why does the new clinic want to retest?  Can't they start with the old tests?

Hope your GD can be diagnosed soon and start treatment to alleviate the pain.  I have a 14 year old GD and a GS as well.  It must be very hard on them at that age to be so sick.  It is hard enough on an adult.  In fairness to the docs they might suspect it is something other than lupus.

Bill

Most rheumys treat arthritic diseases primarily.  Some who practice in a large practice or at a university hospital will have much more experience in treating AI patients.

I have found good doctors at places like Northwestern U, Mayos, Johns Hopkins, U of Chicago, Rush.  Don't know what to recommend around St. Louis.

My case was life threatening and my local rheumy immediately called 2 other, more experienced (with AI diseases) doctors to consult.  One of them was a respected clinical researcher at Northwestern.  I still see my local rheumy as well as a doctor at Northwestern and they work in collaboration although I have been stable for 3.5 years after my crisis.  But you never know with AI diseases.

You might contact the Lupus Foundation to find a doctor who has experience with lupus.

www.lupus.org

http://www.lupus.org/webmodules/webarticlesnet/templates/new_resourcesfind.aspx?articleid=157&zoneid=35 

The second link will take you to the part of their site that has a "find a doctor" feature. 

Bill