Discussions By Condition: I cannot get a diagnosis.

Recurring joint pain in 14 year old

Posted In: I cannot get a diagnosis. 7 Replies
  • Posted By: Anonymous
  • February 21, 2007
  • 07:01 PM

Well, it's back. My daughter had her first episode of joint pain when she was 8 and the second when she was 12. She's now 14. At 12 she had MRIs, a bone scan, blood work-ups including lyme and Rh factor, and an EMG (the neuro one), colonoscopy & endoscopy. The EMG and GI work-ups were normal. The bone scan showed she had osteopenia - the doctor said she had the bones of an old lady, and the spinal MRI showed she had inflammation in her spinal cord, but the neurosurgeon did not believe this was causing any pain because it was not impinging on anything. The blood work-up showed she has Hashimoto's - but her thyroid was functioning normally. She has a normal temperature of 97.

She also had an Abdominal CT (ordered because she has had stomach pain on and off since she could talk) which showed some problems in her jejeunum. A video pill later showed some erosions, but no frank ulcers in the jejeunum - this was treated with nexium. She tested negative for celiac disease. She has no stomach pain now, and has not since she started taking nexium. She has been off of the nexium for about 18 months.

The rheumatologist said she had fibromyalgia due to the pain in the pressure points. She is currently not feeling any pain anywhere other than her joints.

Her joint pain has been severe enough to keep her from walking - during the 12 year old episode she was in a wheelchair for 4 months - this was precipitated by what she described as sprains in both knees and an ankle. This time (at 14) she feels that everytime she walks she has to be really careful because she feels like she is going to twist one of her knees. The only medication that has been able to touch her pain (which can be severe even when she is still) is neurontin. There is no swelling or redness in her joints.

Over the past two years she has been taking a high quality multi-vitamin - Michael's Teen Girls and a calicium & magnesium supplement with enzymes. I recently put her on a somewhat gluten-free diet and she has enzymes with every meal, including "glutenease" when she eats at school. Because of the problem in her jejeunum I have always been suspicious she had celiac in spite of the negative test results. I also recently started giving her fish oil supplements and Threelac as insurance in case she had any yeast issues.

I really felt I had come close to beating it with supplements, but unfortunately her recent relapse shows this isn't the case. When she is in remission, she has no pain (in joints or stomach) and functions absolutely normally. The only thing comforting to me about this is that I know since it has gone away before, it will go away again.

These episodes seem to occur around times when she is growing rapidly - she grew 4 inches over 8 months during the 12 year old episode - this was a very good thing as she has had growth delays. She is now 5 feet tall, which is far under her genetic potential (I am 5'5 and my husband is 5'10). She is also underweight for her size at 80 pounds, despite a healthy appetite. After everything settled down after the 12 year old episode, she gained 20 pounds, but during the last year she has plateaued in height and weight.

Does anyone have any ideas? We are in South Florida, and have had ticks - and I know she was bitten w/o a bull's eye rash, although the docs all say the ticks here dont carry lyme, but I remain suspicious despite the negative test results.

I also want to consider alternative methods at this point. Would accupuncture, herbs, etc help? Which is the best doc for her to see - Naturopath, integrated, accupuncturist, homeopathic? What should I look for as far as specialties since her symptoms are sort of not arthritis, not really autoimmune and not really definable? Which letters after the name should I look for?

Thanks so much for any input as to diagnosis and/or treatment.

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7 Replies:

  • I also want to consider alternative methods at this point. Would accupuncture, herbs, etc help? Which is the best doc for her to see - Naturopath, integrated, accupuncturist, homeopathic? What should I look for as far as specialties since her symptoms are sort of not arthritis, not really autoimmune and not really definable? Which letters after the name should I look for?Seeing a naturopath is a great way to supplement the medicine her doctor has prescribed. Different naturopaths work differently, but I would recommend one who is trained with a naturopathic machine. I don't know what these things are called, but they're like a naturopath's answer to blood tests. A naturopath can use one to help identify the source of your daughter's joint pain, and he can also recommend some supplements that will help her body solve the problem. Naturopathy is also closely linked to acupuncture, so a good naturopath should be able to recommend you a good accupuncturist too, if he thinks that it will help her. Good luck!
    scarington 1 Replies
    • February 21, 2007
    • 08:32 PM
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  • Wow, I have had the exact same symptoms, plus a few more. My doctors, of course, I have not done anything. I had bone scans also, but they never really said anything about them. They just said if I were 200 years older they could list a few things I would have but they say I am just growing. Which I don't think I am. I started having pain when I was 12-13. I know at 13 I was. It usually comes and goes. And sometimes I have really bad flare-ups. I don't know what I have, but many people on here have told me I have lyme. (or they think I do). I looked it up and from what I read it isn't supposed to be around here (I live in north Alabama), but a sign at our public walking park has a one trail that is not paved and you can walk threw the woods. They have signs posted telling about the wildlife and what not. The one by the woods is talking about deer ticks, which may carry lyme disease. And the blood test is almost always a negative whether you have it or not. The doctors where I live are not very good. The only good doctors in Alabama are in Birmingham.I have seen some in Huntsville and Decatur, but none can ind anything. I have to go back to the doctor next week and I am going to ask about it. If you would like to read more about all of my symptoms go to the thread "Joint Pain...Please Help..." by me "wilson_gal22." Maybe you can tell if our symptoms really relate. I hope she gets better soon...I know what it is like....and it is not fun. Thanks. Christi.
    wilson_gal22 46 Replies
    • February 21, 2007
    • 10:05 PM
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  • Infected ticks are now found in all of the lower States and are now being found far north into Canada. Ticks are dispersed by wildlife and birds and there are no safe regions anymore. Don't let anyone tell you otherwise. A good source of info about tick diseases are veterinarians. At this point, they are more knowledgeable of Lyme than most doctors.
    Anonymous 42789 Replies
    • February 22, 2007
    • 00:57 AM
    • 0
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  • I commend you for wanting to use all approaches in helping your daughter! Acupuncture would really help her pain, and it is a very relaxing treatment. To find a practitioner near you please visit www.acufinder.com and type in your zip code. Look for a practitioner who is also a certified Chinese herbalist. They should be certified by NCCAOM. Acupuncture is just great for pain syndromes, and much more. I also agree naturopathy is a helpful option. Have they done or suggested a bone biopsy? Has she had any abnormal white blood cell counts? It is troubling - the osteopenia. I would suggest trying EmergenC as a supplement as it contains easily assimilated mineral ascorbates. They make one with high calcium, and also one for bone health. A good bone supplement should contain other minerals besides the big Cal/Mag, including D, Boron, vanadium. How is her menstruation? Does she have any problems? I also agree it could be Lyme. Best wishes to you.DOM
    acuann 3080 Replies
    • February 22, 2007
    • 01:23 AM
    • 0
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  • I commend you for wanting to use all approaches in helping your daughter! Acupuncture would really help her pain, and it is a very relaxing treatment. To find a practitioner near you please visit www.acufinder.com and type in your zip code. Look for a practitioner who is also a certified Chinese herbalist. They should be certified by NCCAOM. Acupuncture is just great for pain syndromes, and much more. I also agree naturopathy is a helpful option. Have they done or suggested a bone biopsy? Has she had any abnormal white blood cell counts? It is troubling - the osteopenia. I would suggest trying EmergenC as a supplement as it contains easily assimilated mineral ascorbates. They make one with high calcium, and also one for bone health. A good bone supplement should contain other minerals besides the big Cal/Mag, including D, Boron, vanadium. How is her menstruation? Does she have any problems? I also agree it could be Lyme. Best wishes to you.DOMHer wbc was normal during last episode. No one suggested doing bone biopsy - what are you thinking of? The EmergenC is a great idea, becoz I am always concerned about how many of these vitamins she is taking are actually getting through. The Bone formula does not have Boron or Vanadium - how important are these and should I find these in a seperate supplement? I made an appt with the GI doc to see if her intestines are having problems again. I also just refilled the nexium.Her periods started when she was 13 1/2, and after an initial sporadic appearance, have become regular. No unusual pain or clotting.And, thank you so much for the tips on finding an acupuncturist. Her pain level is unacceptably high, and perhaps they'll have some ideas for herbs, supplements, etc.
    Anonymous 42789 Replies
    • February 22, 2007
    • 07:28 PM
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  • Have you ever considered ruling out a possible autoimmune disorder such as Lupus. Blood typing could find antibodies in her blood and I believe they could do a test called an ANA, which stands for anti-nuclear-antibodies.My sister was diagnosed with Lupus on her 16th birthday and she had recurring joint paint that was debilitating for years before she was diagnosed. The doctors couldn't figure it out and she was often dismissed as having "growing pains." Whatever. It was not a "real" diagnosis.Help came in the form of a medical lab technologists (who was at that time my fiance and is now my husband) and a laboratory pathologist. From then, diagnosis and treatment followed quickly.I wish you the best of luck.
    Anonymous 42789 Replies
    • January 3, 2009
    • 05:22 AM
    • 0
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  • I have a grand-daughter that is 12, she has had joint pain for 5 years now, she also has fevers with and without a rash, and occassional elevated Sed. Rate. She saw a rheumatologist but they say similar things one said "growing pains" and one said she has hypermobility in her joints. I looked it up another name or it is often called growing pains. She is over weight but active. She plays soccer, skate boards, and rides dirt bikes. Her muscles are strong in her legs but the rheumatologist wants her to go to physical therapy to strengthen her knees? She has horrible low back pain and hip pain as well as knee, ankle, wrists, and hands. She take anti inflammatories everday which helps her. But I feel like because her mom is disabled and divorced with no insurance they don't want to treat her. Anyone have any suggestions?
    Anonymous 42789 Replies Flag this Response
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