Granddaughter and diagnosis

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debbiR
Veteran Member


Date Joined Feb 2005
Total Posts : 730
   Posted 6/20/2009 11:23 AM (GMT -7)   
Hello! My name is Deb and I normally post on the BC Bd. But I need some help.
 
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
 


mypearl
Regular Member


Date Joined Aug 2005
Total Posts : 215
   Posted 6/20/2009 7:15 PM (GMT -7)   
Deb
I understand so how hard it is to be helpless over a child esp one who is in so much pain. My daughter who's 9 has had anemia, joint aches (crying pain), fatigue, fever of unknown, rashes, now malar is starting after sun, and + ANA since she was 3. Her docs response virus and growing pains. He also said that if it cont into puberty than prob lupus but I wont be waiting around that long. Im waiting for the malar to come full blown and take her to another doc. Im sorry for your grand dtr and your family. Hope they find out something soon to get her out of missory (sp) sorry bout that my brain gets these little air pockets and I forget how to spell sometimes.
sle 92, fibromyalgia 95, t4 fracture 06, hyperthyroid with nodules 05, pernisious anemia 04,
? lupus vasculitis lungs, osteoporosis, c3-4 t1 herniated disks 00, gerd, depression
APLS, hyperthyroid, thyroiditis, complex thyroid nodules, asthma, stiff heart with 4 valve regurg., hemolytic anemia, supraventricular tachycardia
meds:prednisone, plaquinil, imuran, hydrocodone, flexeril, ibprofen, asa, fosamax, prilosec,


Bsime
Veteran Member


Date Joined Apr 2006
Total Posts : 1299
   Posted 6/21/2009 8:09 AM (GMT -7)   
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
MCTD (lupus, scleroderma, polymyositis).  Diagnosed 2005.  Kidney, liver, GI tract, dysphagia, raynauds, Barretts esophagus, quadriplegic in 2005.  Recovered and now active in skiing, tai, chi, hiking, golf.  Meds: prednisone 2.5mg, imuran 50mg, amlodipine, benazapril, omeprazole, potassium, folic acid, vitamins, maxide and various supplements and vitamins.
 
Remain optimistic and you can overcome the odds.


debbiR
Veteran Member


Date Joined Feb 2005
Total Posts : 730
   Posted 6/21/2009 1:09 PM (GMT -7)   
Thank you for your responses. Currently the only meds they have her on are Amitriptyline & Tramadol --both have been prescribed by her neurologist for headaches. Nothing else has been prescribed by any other doctor at this point. Right now the specialists that we are taking her to is a pediatric rhuematologist. Do you suggest any other type of doctor/specialist? What type of doctor specializes in auto immune diseases? Any help/advice is greatly appreciated at this point.
 
Thanks
 
 
deb
 


Bsime
Veteran Member


Date Joined Apr 2006
Total Posts : 1299
   Posted 6/21/2009 1:19 PM (GMT -7)   
Deb,,
 
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.
 
 
 
The second link will take you to the part of their site that has a "find a doctor" feature. 
 
Bill
 
 
MCTD (lupus, scleroderma, polymyositis).  Diagnosed 2005.  Kidney, liver, GI tract, dysphagia, raynauds, Barretts esophagus, quadriplegic in 2005.  Recovered and now active in skiing, tai, chi, hiking, golf.  Meds: prednisone 2.5mg, imuran 50mg, amlodipine, benazapril, omeprazole, potassium, folic acid, vitamins, maxide and various supplements and vitamins.
 
Remain optimistic and you can overcome the odds.


honbunnie
Regular Member


Date Joined Mar 2009
Total Posts : 31
   Posted 6/22/2009 7:28 AM (GMT -7)   

Hi Deb

There are auto-immune diseases that many different doctors treat.  Such As:

Psoriasis-Dermatologist,  Chrons'-GI doc,  Diabetes and Hashimoto's Thyroid-Endocrinologist.  This is just a few.  A rheumatologist does specialize in Lupus and Rheumatoid Arthritis and all AI diseases that affect connective tissue. 

 

I would demand something to help her with the pain if the Tramadol is not working. Could you call the Pediatrician?  There is no reason to suffer in that way until a diagnosis is reached.  I hope you all find answers soon.

 

 


honbunnie
Regular Member


Date Joined Mar 2009
Total Posts : 31
   Posted 6/22/2009 7:35 AM (GMT -7)   
I forgot to say that with a elevated FANA, you are correct to proceed with a Rheum..
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