Discussions By Condition: I cannot get a diagnosis.

please give me some ideas ...

Posted In: I cannot get a diagnosis. 6 Replies
  • Posted By: silversmom
  • March 24, 2008
  • 01:35 AM

I have a 10 year old daughter suffering primarily from chronic pain in her right hip. Bear with me while I try to cover the basics.

Starting in May 2006, she had a low fever that lasted a week. She had pain in her pelvic region and said it hurt to move around. OTC meds did not help fever or pain. Temp never went over 100. in Sept. 2006 she said her hips hurt too much to move. Her pain was not when she was laying or sitting or rolling, only when standing, walking or crawling. Between sept. 2006 and March 2007 she had 3 more bouts of fever and hip pain. Around that time her issues became chronic. The pain never left her right hip and she was having fever almost daily. The fever would appear shortly after waking and would be gone within 4 hours. She stopped having fevers in Oct. 2007 and her bad days seemed to be less frequent. In Feb of 2008 she got another fever and how has the constant pain in the primary joint of her right big toe.
Prior to this she was my healthiest child. She was colicky as a baby and has always had an easily irritated digestive system, in that she spits up/throws up a lot. Her growth is normal though since she started getting sick her growth from the waist down is faster than the top half.
She has been seen by an orthopedist and a rheumatologist. She has had x-rays, a bone scan, an MRI, and blood work. They found nothing abnormal in any of the testing. I had them taking blood within 6 hours of a fever and everything came back normal. They ruled out leukemia, lupus, arthritis, psoriasis and physical deformities.
I asked the rheumatologist if she could have lyme disease and he said "she could have anything." I was advised to put her on 200mg ibuprofen every 4 hours for the pain and force her to just push through the pain. It was suggested that it might be neurological. She was on a medication that is normally used to treat arthritis and it removed all joint pain but gave her migraines so the doc took her off it.

Please, give me some ideas as to what kinds of diseases I need to demand they test her for. We are starting with a new doc this week and a children's hospital in the hopes that their experts can help.

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6 Replies:

  • ive not a clue..but i just wanted to wish you the best in finding an answer for her
    taniaaust1 2267 Replies Flag this Response
  • I would then tell the doctor to test her for lyme and probably a half dozen other diseases, but I don't know which ones.
    Monsterlove 2921 Replies Flag this Response
  • She should be checked out for possible porphyria... since the drs can't seem to find anything else. But she probably doesn't have it.... so don't worry. Usually Porphyria patients have psychological symptoms also like depression, anxiety, psychosis etc etc etc. I hope she gets dxd soon. Swedish Porphryia Diet Info:http://www.youtube.com/watch?v=mbs64GvGgPU&feature=related
    TaylorDeelwithit 382 Replies Flag this Response
  • Lyme's is one of the diseases I will be pushing for them to test for. The doctor who discounted Lyme's was in CA where ticks are not at all an issue so they tend to think Lyme's is not an option. We used to live where ticks were abundant and she has had more bites than I can count, which is why we even considered Lyme's.The doc's exact words to me were "It could be Lyme's, it could be anything, but I am not going to waste my time testing her for 500 obscure diseases that she probably does not have. Her symptoms are not life threatening and she just needs to learn to deal with the pain and stop missing school. Give her ibuprofen if her pain gets too bad. I know this is not what you want to hear."I am also going to push for a nutritional workup and check for food allergies as I am not discounting that this might be just allergies or have enviormental causes. I will keep Porphyria in mind too if we keep running into the brick wall.I will keep y'all posted , thanks for the ideas.
    silversmom 1 Replies Flag this Response
  • Try here: http://orthopedics.about.com/od/pediatrichipinjuries/a/synovitis.htm
    aquila 1263 Replies Flag this Response
  • I wouldn't want my daughter treated by a ***k. Find a new one who will test for lyme and tell him/her that she was bitten a lot. Ask for several other tests, too.
    Monsterlove 2921 Replies Flag this Response
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