Yesterday we took Elijah back to the Shriners Hospital for Children in Chicago to meet with their rheumatologist at the request of the two main pediatricians there who have been working with Elijah and who have thus far not figured out why he has fluid in his hip.
It was rather revealing, though there is no clear diagnosis yet. What we learned we feel finally gives us some solid direction and seems to finally make some sense out of his current symptoms as well as previous problems.
Before Rheumatologist - Molly was doing some reading on the Mayo Clinic website on juvenile arthritis and it revealed that when kids have arthritic problems they can have complications that include eye problems and growth problems. We had discussed with his hospital doctors that a year ago Elijah had a pretty bad but treatable eye problem that happened for no apparent reason and we've been concerned about his growth for years. Some of you know he's been going to various specialists the last few months to figure out why he hasn't been growing much the last few years. This made us more eager to see the rheumatologist.
Rheumatologist Appointment - A younger doctor came in to get the whole story and to give him a preliminary test of his joints and mobility and all that. It took some time. Then she went to discuss with the main rheumatologist. That took some time. Both doctors then entered and here's what we got.
Everything is Linked - While she didn't want to jump to a diagnosis without more tests, she fully believes the growth issue, eye issue, hip, and other ongoing unexplained aches and pains are all related. What's most important is finding out if this is from a possible intestinal problem or juvenile arthritis problem.
Arthritis - She called his hip issue "arthritis." I said, "So it is arthritis?" She said in the broadest definition it certainly is, though it might not be because of a more comprehensive and serious arthritis problem. Any joint inflammation like this is arthritis and a lot of people can have an isolated bout with something like it, often is caused by other health problems. The issue now is finding out the origin of the hip problem to see if it's directly or indirectly an arthritis problem.
Next Tests - We are thankful that the next tests she wants has been on the schedule for a few weeks. Because of his very slow growth he's seen multiple doctors, and most recently a gastroenterologist. He has already scheduled an upper and a lower GI scope to see if there are any abnormalities or signs of intestinal diseases or problems that would cause slower growth. Some blood tests and a stool sample seem to show inflammation, and that could either be coincidental, from the hip inflammation, or something GI related. So the rheumatologist would have requested these tests if not already on the schedule.
IF the GI scopes are positive (show a problem) the rheumatologist is confident the GI issue is the culprit and responsible for the other problems. IF the GI scopes are negative she believes the arthritis issue may be the central problem and that will require more tests as to exactly what the issue is. She explained an example of a kid with an arthritis problem that when finally diagnosed and treated resulted in a massive upswing in his growth. We would love to see something like that!
For Now - The rheumatologist has prescribed a powerful anti-inflammatory. No PE until we figure something out. He couldn't do it anyway. He isn't using a walker anymore and his limp is nearly gone. His range of motion is almost back to normal, but I don't think he could jump or run. Certainly no quick starts or stops or side-to-side motions that put much pressure on the hip.
Schedule - Elijah's GI scopes are scheduled for the first week of February and return visit to the rheumatologist follows on the 17th of February. We should know some immediate results after the GI scopes, but full info won't come until we meet with his GI doctor and then the rheumatologist.
Sidenote - With all doctors in the room yesterday, Elijah unleashed a massive nosebleed. It was an awesomely bloody mess.
If there's something I'm missing or a previous issue I haven't updated, please let me know. I'm trying to be as complete as I can. Thanks again for kind words and ongoing prayers for Elijah.