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#271712 - 06/20/15 06:51 PM Still confused
finns_mom Offline
Registered Visitor

Registered: 04/14/12
Posts: 25
Loc: Lafayette Indiana
I posted on here several years ago, because my then 4 yr old was dealing with chronic pain. At that time, it eventually went away and the rheumatologist suspects that it was reactive arthritis. For the next two years, Finn would have cranky joints during weather changes and season changes, but did well over all.

Over a year ago, the pain came back and never went away. We have now seen two orthopedists and two rheumatologists. He has had bone scans (normal), and mri of his hips (showed a cam impingement), and mri of his spine (normal), xrays (bone loss in the femur. His blood results are always normal..except for a slightly low D value that we corrected. He is on Mobic daily and acetaminophen for breakthrough pain. His pain centers in his hips, lower back and head. We have been doing physical therapy and swim lessons for 6 months to help with core strength and ligament laxity. But no one seems to really know what is wrong. The last Orthopedist really wanted to help, but could only tell us to go back to rheumatology...who have either said ligament laxity (Cincinnati Children's) or a generalized pain disorder (Riley in Indianapolis. This dr was fired).

He has had some relief since school let out, and I suspect that the chairs at school bothered him. During school, he is absent often, and/or goes to rests at the nurse's office.

Now, that the background is covered; can spondilytis be this hard to diagnose? At this point, I have no clue what we are dealing with, but we just keep ruling out issues (Perthe's, cancers, etc..). His pelvis MRI 3 years ago was normal, so there have been changes. The next step is sending the rheum in Cinci the results from the new tests, and see what he thinks. I'm hesitant to put Finn through more Drs appts right now, so we are taking a break. But in the meantime, I am trying to figure out what direction to go?

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#271713 - 06/20/15 06:51 PM Re: Still confused [Re: finns_mom]
finns_mom Offline
Registered Visitor

Registered: 04/14/12
Posts: 25
Loc: Lafayette Indiana
posted on the main board as well.
I forgot to add that he has no loss of passive range of motion, but feels pain with a small amount of rotation in his hips. He is also HLA B27 - .


Edited by finns_mom (06/20/15 06:54 PM)

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#271717 - 06/20/15 10:39 PM Re: Still confused [Re: finns_mom]
Richard Offline
Registered Visitor

Registered: 08/19/03
Posts: 11
To answer your question, yes, AS can be very difficult to diagnose. Reactive is one of the spondylitis diseases. I'm not sure what I would do. If it is inflammatory such as spondylitis, then you are smart to encourage exercise. Swimming is great. Perhaps it would help to watch the webinar SAA held last weekend. Sorry to hear whats going on. I hope whatever it is goes into full remission soon. Sending prayers now.

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