Aaand it's Friday again!
Q and I traipsed up to his orthopedics appointment this morning while his sibs headed off to violin/viola lessons with the Magnificent Auntie. I like the orthopedist, though I could (have I mentioned this already?) go the whole rest of my life without hearing another call pager going off. Twitch.
So here's the deal.
The films show Q's left hip subluxed at 60% or more, and his right moving out more than it was this time last year. More important is the fact that his hip sockets were more bowl-shaped last year and more saucer-shaped this year. This is a pretty solid indicator that he'll need to have surgery at some point. The benefits to going ahead sooner are many. Kids who don't have surgery until they're in constant pain, usually around 14-15 years of age, are really only candidates for resection of the head of the femur at that point. People who are ambulatory with typical tone can have resected femurs and continue to walk because they have lifetimes of good muscle built in that area. People who have atypical tone cannot expect to stand or walk again after a resection. Period.
There's a significant study out of Australia regarding pain in hip dislocations. Not all children with dislocated hips have pain, and some surgeons argue against surgery in any cases who do not have constant pain (see above example for why we would not want to let things get that far). Interestingly, children who attempt to be engaged - verbally, vocally, or otherwise, suffer pain with hip dislocation at the rate of nearly 100%, whereas children who are less able or interested in being socially engaged, do not. This appears even when other factors are controlled. The orthopedist indicates that the hypothesis suggests that it has something to do with hardwiring and development, much more than with communication. Striking info, there. He says that Q falls firmly into that category and he would expect that Q's having some discomfort now (recent developments seem to indicate this), and will eventually have severe pain if untreated.
The surgery is not an emergency. There is a window of eighteen months to two years, and Q's scheduled for his next x-ray and ortho consult in early August. In the meantime, while the orthopedist would certainly not suggest that we look at a Baclofen pump for the purposes of the surgery, but because it's already a consideration, he'd be on board with it as a good next step, which will also provide further post-op tone and pain management opportunities. PTs, OTs, and Q's rehab doc all concur, so the rehab doc has put in a request for a referral to neurosurgery to discuss intrathecal Baclofen. One of the benefits to Q having a pump placed for this is that he would be able to take much smaller doses of the Baclofen. He's currently at the max dose for his weight, 20mgs, 3x/day. The lumbar test dose (which is exactly as notsimple as it sounds) is a 50mcg push, or bolus, delivered in the space of a few minutes in order to gauge particular effects. The daily dose via intrathecal delivery is 100mcg, spread out over 24 hours. The lower dose, delivered directly into his spine, allows it to bypass his liver, which would eventually begin to show toxicity with the high oral dosing. Also, any residual sleepiness goes away with intrathecal Baclofen. He hasn't had much of that, but it would be awesome to see him more alert.
Q has built quite a bit of actual muscle in the last year, since beginning Baclofen. With the tone pushed back a few paces, he can build actual muscle, and he has. He's long and lean, like his paternal set of genes, but there's definitely real muscle in there and he uses it well.
There's so much more to tell. The ortho guy is unbelieveably detailed (which makes my busy brain so happy!), and cited the aforementioned compelling study several times as being the best current source of info on kids with spasticity and hip dysplasia. I'm sure I'm leaving out almost as much as I put in, so pardon me if I revisit to add details over the next couple of days. Another decent source of info.
I'm exhausted. How 'bout you? Hoping sweet things for you this weekend. Next up for Master Q: endocrinology and dental clinic.
"Kiss those babies". -Dy
So here's the deal.
The films show Q's left hip subluxed at 60% or more, and his right moving out more than it was this time last year. More important is the fact that his hip sockets were more bowl-shaped last year and more saucer-shaped this year. This is a pretty solid indicator that he'll need to have surgery at some point. The benefits to going ahead sooner are many. Kids who don't have surgery until they're in constant pain, usually around 14-15 years of age, are really only candidates for resection of the head of the femur at that point. People who are ambulatory with typical tone can have resected femurs and continue to walk because they have lifetimes of good muscle built in that area. People who have atypical tone cannot expect to stand or walk again after a resection. Period.
There's a significant study out of Australia regarding pain in hip dislocations. Not all children with dislocated hips have pain, and some surgeons argue against surgery in any cases who do not have constant pain (see above example for why we would not want to let things get that far). Interestingly, children who attempt to be engaged - verbally, vocally, or otherwise, suffer pain with hip dislocation at the rate of nearly 100%, whereas children who are less able or interested in being socially engaged, do not. This appears even when other factors are controlled. The orthopedist indicates that the hypothesis suggests that it has something to do with hardwiring and development, much more than with communication. Striking info, there. He says that Q falls firmly into that category and he would expect that Q's having some discomfort now (recent developments seem to indicate this), and will eventually have severe pain if untreated.
The surgery is not an emergency. There is a window of eighteen months to two years, and Q's scheduled for his next x-ray and ortho consult in early August. In the meantime, while the orthopedist would certainly not suggest that we look at a Baclofen pump for the purposes of the surgery, but because it's already a consideration, he'd be on board with it as a good next step, which will also provide further post-op tone and pain management opportunities. PTs, OTs, and Q's rehab doc all concur, so the rehab doc has put in a request for a referral to neurosurgery to discuss intrathecal Baclofen. One of the benefits to Q having a pump placed for this is that he would be able to take much smaller doses of the Baclofen. He's currently at the max dose for his weight, 20mgs, 3x/day. The lumbar test dose (which is exactly as notsimple as it sounds) is a 50mcg push, or bolus, delivered in the space of a few minutes in order to gauge particular effects. The daily dose via intrathecal delivery is 100mcg, spread out over 24 hours. The lower dose, delivered directly into his spine, allows it to bypass his liver, which would eventually begin to show toxicity with the high oral dosing. Also, any residual sleepiness goes away with intrathecal Baclofen. He hasn't had much of that, but it would be awesome to see him more alert.
Q has built quite a bit of actual muscle in the last year, since beginning Baclofen. With the tone pushed back a few paces, he can build actual muscle, and he has. He's long and lean, like his paternal set of genes, but there's definitely real muscle in there and he uses it well.
There's so much more to tell. The ortho guy is unbelieveably detailed (which makes my busy brain so happy!), and cited the aforementioned compelling study several times as being the best current source of info on kids with spasticity and hip dysplasia. I'm sure I'm leaving out almost as much as I put in, so pardon me if I revisit to add details over the next couple of days. Another decent source of info.
I'm exhausted. How 'bout you? Hoping sweet things for you this weekend. Next up for Master Q: endocrinology and dental clinic.
"Kiss those babies". -Dy
2 comments:
Three cheers for decent orthopedists, who are probably delighted to work with a parent who can spell intrathecal baclofen correctly! Sounds like Q is doing dandy :)
I love that guy, too! Yay for detail and information. It helps w/ the spinning of the brain.
This all sounds very encouraging, and overwhelming and all-the-things. I can't imagine how you managed to distill it down to a manageable blog post and leave us readers feeling like we got a good meaty update. But you did. Thank you. *heart* (Will blogger's post do the heart? <3 We'll find out.)
THANK YOU for the update!
Love you! Kiss the babies for me, too!
Dy
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