ROCHESTER, N.Y. (Ivanhoe Newswire) - Scoliosis is a potentially fatal condition for children. The spine curvature can be improved with surgeries and metal rods, but now doctors believe something simple could cure it in some kids.
Weeks after her son Cole was born, Jennifer Leggett feared something was wrong.
"We got the X-rays and before we even got home, we had a phone call that we had a big problem," Jennifer Leggett told Ivanhoe.
Cole had a severe form of scoliosis. His spine curved 45 degrees. Experts said surgery could help, but he'd be disabled.
"It was probably the scariest moments of my life," Jennifer said.
They soon found Doctor Jim Sanders.
He's using an old technique cast aside by expert's decades earlier.
"They kind of threw the baby out with the bathwater; almost literally here since it's really the babies who benefit from this," Jim Sanders, MD, Chief of Pediatric Orthopedics University of Rochester Medical Center, told Ivanhoe.
These plaster body casts use pressure to reshape the spine. Kids get a new cast every two months. It keeps some kids from ever needing surgery. For others, it delays surgery until they're older.
Cole didn't require surgery, but he remembers the cast well.
"Every day, I had to wear it and every week," Cole Leggett told Ivanhoe.
Now, he's fully mobile and he's got big plans.
"I'm going to go to space. Also, I'm going to be a karate master," Cole said.
Dr. Sanders said he's been actively training surgeons in the casting technique and it is now available in many sites across the country. He said the casting has helped cure about 25-percent of kids with scoliosis and significantly delayed surgery in about 70-percent.
BACKGROUND: Scoliosis is a curvature of the spine that usually occurs most often during the growth spurt before puberty. The cause of scoliosis is unknown, but it can be caused by conditions like muscular dystrophy and cerebral palsy. Most cases are mild. However, some children develop spine deformities that continue to get more severe as they grow. Severe scoliosis is very disabling by reducing the amount of space in the chest, making it hard for the lungs to function. For many cases, no treatment is required, but others may need to wear a brace or have to get corrective surgery. Signs that a child has scoliosis include: uneven shoulders, one hip higher than the other, one shoulder blade that appears more prominent than the other, and an uneven waist. Also, if the condition worsens, the spine can rotate and twist, causing the ribs on one side to stick out abnormally. (Source: www.mayoclinic.com)
TREATMENT: Most cases of scoliosis are mild and children won't need treatment with surgery or a brace. However, the may need checkups every four to six months to monitor the curvature of their spines. If the child's bones are still growing and they have been diagnosed with a moderate case, then the doctor will suggest a brace to prevent progression. They are usually discontinued after the bones stop growing. There are two types: underarm (low-profile) brace and Milwaukee brace. The underarm brace is plastic and is contoured to fit the body. The Milwaukee brace is a full-torso brace with a neck ring that rests the chin and the back of the head. Surgery is necessary for cases that get worse over time to prevent the severity of scoliosis. The most common type of surgery is spinal fusion. Spinal fusion connects two or more of the bones in the spine together. Pieces of the bone or a similar material are then placed between the vertebrae. Surgery is usually put off until the child is done growing. (Source: www.mayoclinic.com)
NEW TECHNOLOGY: There are various treatment options for scoliosis, but there is a certain technique that could cure it in some kids. It's a retired method by most, called plaster casting. Parents like this method because it eliminates problems of compliance and the difficulties of an uncooperative child. A study in the UK shows that treating non-congenital scoliosis with casts beginning in children at 12 months with an average curve of 32 degrees, have reduced up to 10 degree at maturity. Patients starting treatment at 18 months, with larger curves averaging 52 degrees achieve less correction, but their deformities can be maintained at a similar degree of magnitude. The goal of casting in children under two years old is curing the scoliosis all together. In order to do so, the cast must be changed every 2 to 3 months. After the casting period is over the child will have to wear a brace. Children who are older can be re-casted for four months to re-correct the deformity before continuing their brace treatment. (Source: Scoliosis Research Society) For parents who are interested, there is a website called infantilescoliosis.org. The Infantile Scoliosis Outreach Program is connecting families of children with infantile scoliosis. ISOP is heightening awareness among the medical community and general public about the importance of early treatment for progressive infantile scoliosis, and helping to provide access to the most progressive care options available to infants and children affected by this condition.
James Sanders, MD, Pediatric Orthopedist at the University of Rochester Medical Center, talks about a casting option for scoliosis.
Can you tell me a little about what this type of scoliosis is?
Dr. Sanders: First of all, scoliosis is a curve of the spine and it can curve for lots of different reasons and at different ages. The type of scoliosis that we're talking about here is the type that occurs in really young children. There are a couple of types. There are the children who are born with either nerve, muscle, or bone problems that will get a scoliosis. Then there are some kids who for some unknown reason just develop the scoliosis. It can begin pretty severe and become bad enough that it can start causing trouble with compression of the chest with lung and heart problems from it.
Is it called PIS?
Dr. Sanders: There are all kinds of different acronyms for it. There's early onset scoliosis, which is kind of a more broad encompassing term. Usually we call it progressive idiopathic, progressive early onset, or progressive infantile scoliosis. Any one of those terms is fine for it.
How common is it?
Dr. Sanders: It's pretty rare. We don't have good figures for it. It's relatively common to have the type that resolves and there are a number of kids who have that.
It resolves on its own?
Dr. Sanders: It resolves all on its own. We see a number of kids who have that and they don't need any treatment. They get better by themselves. Then there's the group of kids who have the type which gets worse.
When you see them, do you know which one they're going to be?
Dr. Sanders: There are some X-ray signs that can help you do that: the sloping of the ribs; how big the curve is; how much rotation there is. So there are some signs that go along with it, but the bottom line in many of them is they get worse over time.
What's the prognosis?
Dr. Sanders: Well, there was a study that was done in Scandinavia, which looked at how kids did with this long-term and the mortality rate starts rising in the 20s, 30s, and 40s. This is not a benign condition. If it's left unchecked, then there lifespan is not normal.
What are the treatments for it and are they readily available for people?
Dr. Sanders: There are different treatments. The first treatment would be to try a brace and see if you could do something with a brace. There are also different types of rods and devices that we can use to attach to the spine. They all have their own issues and their own benefits that go along with them. None of them are perfect.
Do you know which person will do better with a brace? Do you tailor it?
Dr. Sanders: We tailor it a lot. Probably the most powerful technique of correcting in the curves that aren't getting better is using some form of growing rods. There are two types: types that attach to the spine and types that attach to the ribs. The problem with those is that over time, the spine and the chest start getting stiff. They start developing more and more infections and you can only do them in many kids for a certain period of time before they stop really working the way that you want them to do. Sometimes we fully succeed, but sometimes we fully succeed using casts and sometimes we don't. If we can use the casts to delay the onset of doing the surgeries, then we've done the children some real benefit.
So now tell me about this casting technique and what it is?
Dr. Sanders: The casting technique was used all the time for all scoliosis. People would come when they were teenagers and they would get casted for scoliosis. They used to do the surgeries through the cast. It was a big deal and it didn't work very well. You could get a fair amount of correction. However, when they developed really good instrumentation, the hooks and the rods for the spine back in the late 1950s, early 1960s, people gave up on casts. The problem is they kind of threw the baby out with the bathwater; almost literally here since it's really the babies who benefit from this, rather than the older kids. So we've had kind of a resurgence of a really old technique. It was developed in the early 1960s in France and was popularized by a woman in Great Britain, Dr. Min Mehta, who continued doing it for the last several decades despite no one really paying much attention to her.
How does it work?
Dr. Sanders: The cast is applied while the child is asleep. It actually rotates the spine because the spine in these children is not just curved, it's also twisted. If you really work hard on correcting the twist, you can improve the volume of the lungs and you can align the spine much better. We found that in a certain number of these kids, you're actually able to cure the curve.
This is a series of casts? How is it done?
Dr. Sanders: The casts are done every couple of months when the kids are young. Again, it's done with them asleep under general anesthesia, so we have to take them to the operating room to do it. We have a special table that we put them on and then we apply the cast to that while applying the correction maneuvers with it. Then the kids get up and they run around and they play and it's almost for most of them like they don't have a cast on.
They wear that for the next two months and then you put on a new one?
Dr. Sanders: Exactly. We are trying to do gradual increase in correction over time.
What's the typical age in starting this?
Dr. Sanders: If I could get it started around a year of age or before, I would love to do that.
A year old is the ideal?
Dr. Sanders: Yes, but sometimes we're not seeing the kids until two or three years of age. We'll certainly give them a try at that point and see how they do.
The younger you start, the more effective it is?
Dr. Sanders: Yes. The younger you start, the more effective. Our best results have been 18 months and under.
How long do they have to wear it?
Dr. Sanders: At least for a year of doing the casting. When parents start it, I ask them to give me a commitment that they're going to do it for a year. If we're still seeing continued correction, which often times we are, the families are usually excited enough to continue at that point. If we're not seeing continued correction at that point, then we discuss what our other options will be.
In the cases where it works, what do you see at the end of a year?
Dr. Sanders: The curve is really disappearing.
What does that mean? They're done with the cast after that?
Dr. Sanders: That's our hope. Eventually we put them in a brace for about a year after the cast is done. Then from what we can tell so far, the curves tend to stay away if they go away.
It's not something that comes back? Once it's straightened, it's straightened?
Dr. Sanders: That's what our impression is so far.
What kind of impact is this having on these children who had to go to surgery before?
Dr. Sanders: Certainly the kids in whom the curve goes away, the families are ecstatic and the kids are doing just fine. However, that's not the majority of the kids. The majority of the kids still have continued curves that we still have to continue treating one way or another.
So this will help those children even if it doesn't cure those children. What's their prognosis? Will they have more surgeries?
Dr. Sanders: They may end up with more surgeries over time, but the longer that we can delay the surgery without causing the child any troubles, the better.
Is it better to delay the surgeries until they're done growing?
Dr. Sanders: Ideally, that would be the best. Today, I had three children that I treated for something like this that I did surgery on. We have to go back every six months or so when we do surgeries where we lengthen the device that we put in there. That's traumatic for the children; it creates scar tissue with multiple anesthesias. It's not something that the families or the children relish.
Were these children that you saw too late or did the casting not work?
Dr. Sanders: Both. One of the children I saw today was a little bit late. Two of them had syndromes, which made it more difficult to treat the curves. The children, who have different syndromes, don't succeed quite as often. Another young lady that we treated today, she had a bone malformation, which caused the scoliosis.
Who are the best candidates?
Dr. Sanders: The best candidates are the young children who have a curve, which is idiopathic, meaning the children don't have some form of a syndrome, whose curves are somewhere around the 40 to 50 degree range.
For the children where it fixes their spine and cures them, what is their life like now after this?
Dr. Sanders: So far it seems to be that they're doing normal things, normal activities and just being normal kids.
So no physical restrictions?
Dr. Sanders: No restrictions physically. We've been doing it on a regular basis since at least 2003 so we've been doing it for a while and these kids are doing quite well.
How do they compare? How do the kids who are casted compare to the children maybe earlier before this resurgence, with the surgeries?
Dr. Sanders: The children who have surgeries end up a lot more in the hospital with many more complications, stiffer spines that are much more difficult things to treat in the long run.
Is the lifespan improved?
Dr. Sanders: We think so. We don't have data to tell you that but it certainly makes sense that if the kids are up and running around and their spines seem to be pretty normal, their chests can grow that they're going to have normal lifespans.
Why has it not been used? Why aren't more people doing this?
Dr. Sanders: I think places are now. We first presented our results several years ago and when Min Mehta gave her papers, no one paid much attention to it. There were a couple of us Jacques D'Astous in Salt Lake City. I was at Shriners at that point and we were having some pretty good success. Ms. Mehta, despite all the good work that she had done, was not really part of the mainstream. We're kind of part of the mainstream, so when we start presenting our results and people are going, this really works. It has taken a few years. We've had a few people somewhat derogatory of what we were doing at the beginning, but the data's coming around and there are several studies now from different places going you know, I think these guys are right.
It seems like this is easier for the children, is it also more cost-effective all the way around?
Dr. Sanders: We have not done cost–effectiveness analysis on it, but it certainly makes sense that if you're making kids much more normal ultimately or delaying complications and making complications fewer, you're certainly going to make it much more cost-effective. However, the kids are coming every two months. Often times they've been coming from long distances
Do you know how many centers are doing this?
Dr. Sanders: When we started in 2003, there were only a couple of us that were doing it. Maybe a couple of others those were around, but the number of places that now have the ability to do it has really increased quite a bit so we're not seeing the large volume of kids coming from such a distance as we did in the past.
If someone wants to find someone doing this in their area, how would they find them?
Dr. Sanders: Interesting. A lot of times what ends up happening is the Children go to their pediatrician. The pediatrician says, I've read something about infantile scoliosis in the past; they end up sending them to the local orthopedist. It might be a pediatric orthopedist. If the pediatric orthopedist has been kind of part of the group, or has been around, then they will at least be aware of what we are doing and they may or may not send them to one of the people who's doing the casting. There's a website out there, which is the infantile ISOP. It's a parent group that's really sort of taken this under their wing. This has been a good thing for the children and a support group, and they have a blog site and things. A lot of families end up being put in contact through that when they find it on the web.
Can you tell me more about the rods?
Dr. Sanders: The issues with the growing rods are that they can be very effective at correcting the curve. The longer they are in, the more times you do the lengthening. So you're doing this about every six months. The children's spines start to get stiff. The longer they're in, the more likely you are to have rod breakages, infections, and pull-outs. They start to fuse, joining together spontaneously, which then changes the growth. They're not a benign thing and I think that's because people are coming to realize that even when the casting doesn't succeed in preventing the growing rods, the casting does a good job in delaying that. That's a really good thing. If they have to start out with the rods, they have to do that for longer period of time, because you're trying to do it until they reach the end of their growth. Then at the end of their growth, you can do regular spine fusions which are done for scoliosis so you're going back every six months for years.
The casting is for a year?
Dr. Sanders: It's a year, maybe two years with it. Then you're using a brace. Sometimes you can, if you're not getting full correction with the curve, you go look, let's give you a break for the summer. We'll just go with a brace for the summer. We'll try to do some casting again come the fall when the weather gets bad after the kid's had a chance to swim. There's lots of ways to kind of work around it and postpone the surgery until the kids are much older.
What are you hearing from parents?
Dr. Sanders: Parents are really excited when they start because they get onto the parent's web site and they think my child's curve might get cured, but not every child's curve gets cured. When their child's curve isn't getting cured, there's sort of this letdown that they have. It's trying to help them realize look, you're still doing a lot better by doing this than if you weren't. It's a big time and it's a big investment that the parents are making in terms of coming in every couple of months, having their child have a new cast applied, and they have a lot of vested interest in how those X-rays look the next time.
Is it entirely external?
Dr. Sanders: It's external, yes.
Why does it work so well in the very young, but not older children?
Dr. Sanders: First of all, it's much harder for a teenager to tolerate a big body cast than it is for a two–year-old. The second is you can apply a lot more relative force on the two-year-old than you can on the adolescent. The third is that the disease itself is somehow different. It seems that in these early curves, if you can get a grip on them early, literally get a grip on them by correcting it, you can get them to change their course. Whereas we're not really sure that's the case with the adolescents.
How does scoliosis shorten a life? Does it injure organs?
Dr. Sanders: Scoliosis is a curve of the spine. If you think of a curve in your chest that's curving the spine, it's going to push the spine up against the ribs on one side and away from it on the other. Then the spine also twists and as it twists, the normal motion that you get of your ribs when you breathe can't happen anymore because it's all been throng off kilter. So you end up squeezing the chest and the chest doesn't move the way it should. So you end up compressing the lungs; the heart can't therefore get the same oxygenation as it's pumping the blood through it so that's where you run into the issues.
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