View Full Version : Appointment update
11th November 2004, 07:02 PM
Erin had her 6 week check up today and while I didn't think the news was good, the consultant said he was "encouraged", so now I'm confused. Basically because she has grown again the cast has moved up and the pressure points are no longer putting pressure where they should be and the curve is on the move again. It measured at 45, which is 9 more degrees than she measured at 6 weeks ago, and the most she has measured at in a cast so far.
Basically, the pattern has been...
Before cast - 62
In first cast - 38
6 wks later - 42
In second cast - 36
6 wks later - 45
So, I can't see how this is "encouraging". Yes, I know it's better than 62, but it's worse than 36 when I thought it was supposed to be getting better.
Anyway, they are going to get her back in within the next month to change the cast as this one has stopped working. Let's hope it's not the week before Christmas!
11th November 2004, 07:46 PM
I can imagine he's encouraged because she's grown.A spine growing into a 45 degree curve is far better than a spine growing into a 62 degree curve.Now that growth has taken place maybe they'll get some more correction under traction next time and allow her to have a straighter spine during her next growth spurt.I know it's frustrating seeing this see sawing effect but I think it shows that the curve is in fact under control.It also shows that her doctors are responsive to the changes in her scoliosis and I still woulldn't feel pessimistic Andrea.Yes a cast change during the run up to Christmas does not sound appealing.
11th November 2004, 08:40 PM
I think part of the problem you're facing is that you saw so much correction the first time around that now you're disappointed when it doesn't continue at that rate. But truly, Erin is much better off now than when treatment started, and she's growing! I'm sure you know how important that is.
Looking at the list of measurements you gave us, if I'm reading it correctly, I see a change of +3°, not +9°. Compare her first cast 6-weeks out measurement to her second cast 6-weeks out. She only goes from 42° to 45°.
I wouldn't rely on those 38° and 36° figures much. Of course she'll be straighter immediately after applying each new cast. They get her as straight as they can by manipulation, and then immobilize her spine that way. What I'm seeing is that at the time of the second casting, they were able to manipulate her even straighter than when applying the first cast. That, to me, is encouraging. Am I seeing it wrong?
11th November 2004, 08:46 PM
It seems like after 6weeks of a cast her curve goes up...I don't quite understand that! When will she be getting her next cast?
I hope that she gets a better correction next time
11th November 2004, 09:33 PM
Abbi, when applying the cast, they pull the child's spine as straight as possible, then fit her with a cast while in that position. So her curve isn't actually gone... she's just pulled straight. Over time, she grows, but the cast was fitted for a smaller person, so there will be some changes. But to be at 45° from an original curve of 62° doesn't sound bad at all. And, she's hopefully much taller today than she was when they started 3 or 4 months ago. Every little bit of growth she can get now without progression of her curve will be invaluable to her when she's older. Trust me on that one.
11th November 2004, 09:54 PM
Is this a procedure kind of like the one on that scoliosis video? Cause if it is, then a curve progression is known to happen as they are just stabilizing it as she grows. They used a movable rod in the video and they said that the curve would progress and they would have to continually go in and make adjustments to straighten it out...then wait for more curve when she grows...then straighten it out...and the cycle continues until she is done growing.
Does that sound right, or is this a totally different type of procedure? If it's the same type of procedure, I would say she is doing marvelous.
11th November 2004, 10:50 PM
Next time you see the doctor, you might want to ask some more questions about why it was encouraging, because it occurs to me that not only is there the fact that she's had a growth spurt in that time, and it still hasn't increased hugely, which is definitely encouraging, but it's also possible that the curve has become less rotated, which would be great if it has :-)
*fingers crossed for the cast change not to be just before christmas*
12th November 2004, 12:24 AM
How often does Erin's cast usually get changed, Andrea? I used to have mine done every two months, never longer.
This result does seem encouraging to me, too - it's a vast improvement on her original 62 degrees, and I guess they measure the curve immediately after putting the cast on, so there's bound to be some settling after she's worn it for a while. Fingers crossed everything is OK - I'm sure the specialist wouldn't be so reassuring if he was worried at all.
12th November 2004, 10:52 AM
Thanks for your replies everyone.
Lindsay - I haven't seen the video that you're referring to, but I think you might be talking about growing rods. Erin hasn't had any surgery and hasn't got any rods, so it sounds like this is different. She is in a plaster cast from neck to hips that is intended to keep pressure on the right places so the curve can't progress.
I've plotted all her degrees in a spreadsheet and put a chart together, and the trendline is on the way down, which IS encouraging. What concerns me is that if they could only straighten her to 36 degrees from 42, how can they straighten her more this time when their starting point is greater? Does that make sense?
Toni - the gap between the first and second casts was 3 months and 2 weeks, which was longer than the original 10 weeks, which the consultant wanted. This time it's going to be about 2 and a half months. I think I might talk to them about changing it every couple of months instead, just in case it makes a difference. She is growing so fast that the cast becomes ill-fitting quite quickly. Even after 6 weeks, he said it is fitting her badly.
Anyway, thanks for your support. I'll let you know when the date is.
Andrea and Erin (who slept until 9.15 this morning - hurrah)
12th November 2004, 11:00 AM
That's worrying that she outgrows the cast so quickly Andrea.In the interests of gaining the maximum from the treatment, You'll just have to be assertive and insist that the cast be changed more regularly.Make sure the consultant is fully aware of just how quickly she grows and what's happening......be proactive in her care and treatment.Having said that I still think she's doing well.
12th November 2004, 09:37 PM
It must have been the growing rods that I was talking about. Wouldn't the casts work similarly but it's basically the non-surgical approach?
13th November 2004, 12:52 AM
Andrea, I'm with Sins. Your daughter is growing rapidly - she needs the cast changed more often. Drive them crazy with phone calls etc. Ask them "What if it was their daughter?" YOU are her best chance to get good care. Perhaps if they see it from your point of view maybe they will pay closer attention. Ask for copies of their notes.
13th November 2004, 06:53 AM
When I was going through casts when I was between 2 months and 10 months of age, it was supposed to be changed every six weeks. The first one was on about that long, but we ended up on "leave" (my dad was being transferred, so he took a few weeks off to travel up to see his family before we moved to California) at the time of my second cast change. It ended up being on for eight or nine weeks.
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