Another day, another doctor
Last week we took Samantha to see Dr. Miller, a highly recommended (by a friend of a friend) pediatric rheumatologist. The theory was that Sam's discomfort might be related to an intra-articular osteoid osteoma, and a rheumatologist like Dr. Miller might be adept at identifying such a thing.
It was a long visit with the doctor -- two doctors, actually, since she had a colleague there. The doctor agreed that (a) Samantha's case is certainly something of a mystery, and (b) we've all been through a lot over the past few months.
Samantha has already had an extremely thorough workup and the doctors thought that an osteoma, even of the hard to diagnose intra-articular variety, that's sufficient to cause the level of pain Samantha has experienced would probably have shown up on the imaging studies already done. In spite of that it's worth going ahead with a couple of additional studies including a pinpoint aperture bone scan and a CT scan, because they're tools that we have at our disposal and they might reveal something new. They'd also like to do another round of blood tests to recheck things and to look for some additional more subtle markers, though they didn't say exactly for what.
Dr. Miller reminded us that in view of the things they deal with there every day, all things considered, the lack of a diagnosis isn't the worst possible outcome. Some kids do experience pain whose cause is never identified, but that's probably a lot better than pain whose cause is identified and turns out to be something horrible or life-threatening.
Samantha turns out to be seriously hyperflexible in both her knees and her hips. Where most people's knees lock when their legs are at about 180 degrees (straight out), Samantha's knees flex 20 degrees or more backwards. She has similar flexibility from side to side in her knees, and her hips flex 40 or more degrees further than most people. Dr. Miller said you see this kind of flexibility in great dancers, skaters, or skiiers. But it can be accompanied by micro-tears and trauma in the joints, and this may be the cause of Sam's pain. Interestingly, that's the same speculation her pediatrician made in the beginning.
The one reassuring thing they did say is that there's absolutely no reason, in their opinion, to be concerned about Samantha taking naproxen, even for a long time. They said they have kids who take it for years then "graduate" out to an adult medical program at 18 and take it for even more years, that it's well tolerated and as long as it's effective, don't lose a second's sleep over having her on it for as long as it takes.
In fact, they suggested that rather than trying to titrate down the dosage or periodically stop giving it to her to see if her pain has resolved itself, we just let nature do the work. As she gets bigger and puts on weight her dosage in mg/kg will naturally go down and we'll see whether or not she starts to experience recurrent pain in her knee. This process may take a long time unless she grows very quickly, but Dr. Miller's advice was that after what we've all been through this year we give ourselves "a good long time" with Samantha being pain-free, and give everyone a chance to recover a bit from what's already happened.
Oh, they also did another series of X-rays of her knees and hips while we were there. All completely normal except for a slight bit of inflammation, which may be as much a symptom of her pain as a cause, and which the doctors seemed to feel was no cause for concern at this point.
I'm sure there will be more to come, and we'll keep you posted on her progress, gentle reader.
It was a long visit with the doctor -- two doctors, actually, since she had a colleague there. The doctor agreed that (a) Samantha's case is certainly something of a mystery, and (b) we've all been through a lot over the past few months.
Samantha has already had an extremely thorough workup and the doctors thought that an osteoma, even of the hard to diagnose intra-articular variety, that's sufficient to cause the level of pain Samantha has experienced would probably have shown up on the imaging studies already done. In spite of that it's worth going ahead with a couple of additional studies including a pinpoint aperture bone scan and a CT scan, because they're tools that we have at our disposal and they might reveal something new. They'd also like to do another round of blood tests to recheck things and to look for some additional more subtle markers, though they didn't say exactly for what.
Dr. Miller reminded us that in view of the things they deal with there every day, all things considered, the lack of a diagnosis isn't the worst possible outcome. Some kids do experience pain whose cause is never identified, but that's probably a lot better than pain whose cause is identified and turns out to be something horrible or life-threatening.
Samantha turns out to be seriously hyperflexible in both her knees and her hips. Where most people's knees lock when their legs are at about 180 degrees (straight out), Samantha's knees flex 20 degrees or more backwards. She has similar flexibility from side to side in her knees, and her hips flex 40 or more degrees further than most people. Dr. Miller said you see this kind of flexibility in great dancers, skaters, or skiiers. But it can be accompanied by micro-tears and trauma in the joints, and this may be the cause of Sam's pain. Interestingly, that's the same speculation her pediatrician made in the beginning.
The one reassuring thing they did say is that there's absolutely no reason, in their opinion, to be concerned about Samantha taking naproxen, even for a long time. They said they have kids who take it for years then "graduate" out to an adult medical program at 18 and take it for even more years, that it's well tolerated and as long as it's effective, don't lose a second's sleep over having her on it for as long as it takes.
In fact, they suggested that rather than trying to titrate down the dosage or periodically stop giving it to her to see if her pain has resolved itself, we just let nature do the work. As she gets bigger and puts on weight her dosage in mg/kg will naturally go down and we'll see whether or not she starts to experience recurrent pain in her knee. This process may take a long time unless she grows very quickly, but Dr. Miller's advice was that after what we've all been through this year we give ourselves "a good long time" with Samantha being pain-free, and give everyone a chance to recover a bit from what's already happened.
Oh, they also did another series of X-rays of her knees and hips while we were there. All completely normal except for a slight bit of inflammation, which may be as much a symptom of her pain as a cause, and which the doctors seemed to feel was no cause for concern at this point.
I'm sure there will be more to come, and we'll keep you posted on her progress, gentle reader.
posted by Matt | 11:56 PM
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