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Posted By : DynamicDolphin - 6/24/2016 6:48 PM
Hi,

Not too sure where to post this as we dont have a diagnosis yet...


14 Year old daughter who has been dancing for many years, approx 3 nights per week, has never had any knee issues or injuries.
4-5 months ago she started have sore knees, we thought it was just growing pains.
Knee's became so painful she had to stop dancing and walking was becoming difficult, doc susspected Osgood Schlatter syndrome.
1 month later my daughter cant go to school and is confined to a wheelchair at home, just too painful to even stand up.
Doc does not know, referred us to a pediatric speacialist who ordered x-ray, MRI's on both knees, bloods.
X-ray = normal
MRIx2 = normal
Blood tests incl Lupus = normal

She has full ovement but just increadibly painful, she descibes it as bone on bone grinding.
Knees have NO swelling though are hot to touch.
She has NO fever
The knees DO crack when she tries to move, this popping sends a shooting pain down her calf and she is then in pain for several hours afterwards and cripled. We have been to various hospital emergency depts when this happens, they dont know the cause and can only offer drugs Endone which does not even help with the pain...

Pediatrician has referred us to a child Rheumatologist, waiting for appointment.
She has been off school for almost 3 months now and in a wheelchair for 2 months.


Any ideas appreciated...

Post Edited (DynamicDolphin) : 6/24/2016 6:59:21 PM (GMT-6)


Posted By : couchtater - 6/24/2016 7:04 PM
My nephew had the condition you described. He is very athletic too. It took a few months of babying his knees to get better.

I wonder if it's sero-negative arthritis going on?
Joy
Lupus, RA, Fibromyalgia, Glaucoma, Asthma, Hypothyriodism, Sleep Apnea, Depression, Allergies, diabetes, and benign familia tremors

When life throws you lemons....
Pick them up and throw them right back at them! :))

Posted By : Alice22 - 6/24/2016 10:50 PM
Not sure what area of the country you are in but I would try to go to a hospital that specializes in rheumatology. I found this list of "best hospitals for rheumatology" online:

http://health.usnews.com/best-hospitals/rankings/rheumatology

Also this is cut and pasted from another site:

"Best hospital for Rheumatology
Hospital for Special Surgery, New York, NY"

Website: www.hss.edu

"There are over 100 different kinds of rheumatologic diseases and it is estimated that nearly 70 million Americans suffer from some form of arthritis or chronic joint symptoms. Furthermore, over 20.7 million adults suffer from osteoarthritis - the most common form of arthritis.

The Hospital for Special Surgery is ranked one of the best facilities for patients living with rheumatic diseases. The hospital's rheumatology division is a leader in research and treatment of rheumatic diseases such as antiphospholipid syndrome, arthritis (childhood to adult), rheumatoid arthritis, osteoarthritis, lupus and many other related disorders.

The rheumatology division encompasses several dedicated centers for various types of rheumatic diseases including the Barbara Volcker Center for Women and Rheumatic Disease, the Mary Kirkland Center for Lupus Care, the Mary Kirkland Center for Lupus Research, and Center for Inflammatory Arthritis and Innovative Biologic Therapy. The division also offers comprehensive support programs for patients including the Myositis Education and Support Program, Rheumatoid Arthritis Programs, Infusion Therapy Unit, and Lupus Program.

The not-for profit facility has 271 full-time physicians and three part-time physicians to support the 162 patient beds."
Diagnosed with ulcerative colitis in 2005 and rheumatoid arthritis in 1998. On Remicade since 2005 for both diseases. For UC tried sulfasalazine, Lialda, colazal and others which made me ill. Started 50 mg. Imuran July 2015. Use peppermint oil capsules and Bentyl which help during a flare and with IBS symptoms.

Caregiver for mother with Alzheimer's Disease (for Alz. forum).

Posted By : DynamicDolphin - 6/25/2016 12:43 AM
Im actually in Australia...

Posted By : eat2bwell - 6/25/2016 7:09 AM
Might try a chiropractor.

Posted By : Alice22 - 6/25/2016 10:55 PM
A rheumatologist is your best bet - hopefully your daughter will get an appointment soon and the doctor will be able to figure out what is wrong. But if not don't hesitate getting a second opinion from another one.
Diagnosed with ulcerative colitis in 2005 and rheumatoid arthritis in 1998. On Remicade since 2005 for both diseases. For UC tried sulfasalazine, Lialda, colazal and others which made me ill. Started 50 mg. Imuran July 2015. Use peppermint oil capsules and Bentyl which help during a flare and with IBS symptoms.

Caregiver for mother with Alzheimer's Disease (for Alz. forum).

Posted By : celebrate life - 7/3/2016 11:52 PM
Dynamic,
Welcome to the HW forum. I am so sorry that you are having to go through the agony of not knowing. With the negative scans and hot joints, it sure sounds like RA. Do you know what her sedrate number was? When I first got RA, the swelling in my knees was minimal, but the sedrate was sky high indicating lots of inflammation. My RA test came back negative, but I finally got to a good rheumatologist that was able to get me on good meds and I went from crippled like your daughter to well controlled.
Best wishes. I hope the Rheumy gives you answers and a good treatment plan.
Beth

Posted By : Chartreux - 7/5/2016 1:03 PM
I agree with the others sounds like you need to keep the appointment with the child RA doctor. It's difficult when it's happening to your child, just keep pushing for answers, answers are out there...
You have my prayers, go to the national RA website and compare what you see there and ask the doctor questions, as to what it could be... Web md has a symptom checker that might help
**********************************************
* So many dx's I could write a book* "It would be nice if we could use the edit button in real life"...
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Posted By : CA-Lynn - 7/5/2016 5:54 PM
Keep the appointment with the pediatric Rheumatologist. But call them every morning about 15-30 minutes after they open to see if there's a cancellation so they can squeeze you in. Sooner of later you're bound to hit it lucky.

You mentioned that your child has not been in school for months. I wonder if this is a good thing. Most RA patients need to be actively involved in something as a means of distraction.

Like someone else posted.......wonder if it's sero-negative RA. [I have that....and about 20% of all RA patients are sero-negative.]

Posted By : MarleneF - 7/6/2016 9:41 PM
I also had sero-negative RA for the first 4 years. It made it hard to get a diagnosis or treatment. Do be aggressive in trying to get her in.

Is she doing school work at home? In the school district I worked in, there was a homebound teacher the district had who went out and visited and helped students who were unable to get to school because of medical reasons.

I hope you find some answers

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