Evidence based treatments
Evidence based research is the only valid criteria that we use to choose appropriate treatments for our patients. Unfortunately, there are a lot of treatments that are available to the public that are not evidence based. Hyperbaric oxygen is the one that gets the most attention. It’s heavily promoted and there’s really no research that supports something like that. However, there are many other evidence based therapies that we can use. Somebody once said that because a lot of the data is anecdotal, like “I know somebody who did really well with that treatment”, that anecdotes are not data. Just because a dozen people did well with a certain treatment that does not mean that the treatment works. It still needs to undergo rigorous scientific study.
David Coulter, MD, Pediatric Neurologist
Hippotherapy
Hippotherapy (therapeutic horseback riding) is helpful to a child’s posture. The warmth of the horse also relaxes tight adductor muscles. But so important: it is fun and good for the soul. And children are justly proud of their accomplishments.
Carol Nolan, RN, BSN, Registered Nurse
Physical therapy
One of the big interventions that we recommend a lot of the time for kids with CP is physical therapy. Some kids love physical therapy, and some have a harder time with it. It’s extremely beneficial for kids with CP to help stretch their tight muscles. For kids who have difficulties with their breathing; we have them doing a lot of chest physical therapy to help them clear the secretions from their lungs. Some kids really enjoy that sensation.
Emily Davidson, MD, MPH, Pediatrician, Complex Care Services
Making physical therapy fun
The things that I think kids are most resistant to are the same old boring exercises day in and day out, which I totally understand. I’m not very good at doing exercises myself so probably wouldn’t do them if I had to do them forever. The things that we are trying to do is find activities, recreational activities, and different ways of doing things that are interesting to the child. Sometimes that means changing up what they’re doing. If the child gets botox injections while doing six or eight weeks of conventional therapy with some strengthening, maybe they can start doing aquatic therapy or hippotherapy after that acute period of six eight weeks is over. So it’s changed up a little bit so that it’s not as boring. Certainly some of the things that we do, which is really gratifying and that both they kids and the families really like, is when we introduce a child to a power mobility, an electric wheel chair. For a child who hasn’t been able to propel or move themselves around their environment by themselves, to give them the ability to do that is one of the more fun things to do.
Susan Riley, PT, MS, DPT, PCS, Physical Therapist
Physical therapy over a lifetime
What’s important for families to know is that their children, by virtue of the disease, are going to have to be involved in some sort of physical therapy or exercise throughout their lives, but that does not necessarily mean continuous physical therapy throughout their lives. There may be episodes of intensive therapy and then maybe when the therapy is not so intensive, they’re doing another program that’s appropriate for them at home to maintain what they’re doing. Then, if they have a procedure, intervention, or come across new challenge that they need help addressing, we can help with that. For example, a child has been in an elementary school and now he is going to middle school. And now, instead of being in one classroom he is going to be throughout a whole building. That may be a time to increase the PT a little bit and figure out how is this child going to negotiate busy hallways? What are we going do about classroom accessibility? If the child’s in a wheelchair, is there a desk or a table in every room the child needs to go in that he can get to? If he needs to go up and down stairs and his balance isn’t very good on stairs, do we work on balance so that he can continue to do that? Or do we get elevator keys? So, there will be times that things will change, but it’s important to know that it doesn’t necessarily mean that for every week of your child’s life he or she have to have two physical therapy sessions.
Susan Riley, PT, MS, DPT, PCS, Physical Therapist
The pre-operative discussion
There are three issues in a pre-operative discussion. The first issue is just making sure that all the other associated medical problems that these kids have are dealt with because it’s often not the orthopedic surgery that keeps the kids in the hospital that complicates the surgery. It’s often that their associated with medical conditions, such as seizure disorders, problems with reflux or constipation basically just come back and bite you during a postoperative period. So first it’s addressing those issues upfront to try to minimize the problems post surgery. Second, is then a clear discussion is to exactly what the surgery is. What it entails and what the incisions will look like. The third part is a discussion as to what the rehabilitation and post operative period will consist of. My statement is always that the surgery is easiest part of the whole protocol. It’s the post operative recovery with rehabilitation that’s the hardest and the most important. If children and families cannot partake in a physical therapy program after the surgery, the surgery itself is pretty much useless. So the hard work is the rehab afterwards. And that is explaining to parents that this will take months. It will take three months before the kid is even remotely back to the level that they were before the surgery. Six months before maybe they see some improvement. Really, truly close to a year before you can actually assess whether the surgery was helpful or not.
Brian Snyder, MD, PhD, Orthopedic Surgeon
Hip surgery
We have a fairly standard post operative follow up routine for hip surgery. From the day of surgery, a post operative visit happens about three weeks after and your child will get x rays of the hips if he or she had bony work done. If there was no bony work done, there are no x rays and the visit is mainly for wound evaluation and then if everything else is going well, he or she will be allowed to do just gentle range of motion on the hips, knees, and ankles. The child will stay in the braces that he or she came out of the surgery in. After three weeks, he or she is allowed to come out of it for bathing and physical therapy, otherwise the child needs to stay in them for another 3 weeks. Then when you come back for the 6 week follow up visit, he or she gets rid of the braces entirely or stays in them at night at least, depending on what the individual situation is.
Travis Matheney, MD, MLA, Orthopedic Surgeon
Explaining surgery to patients
Pre-operatively for each operation, I pull up the x ray on the computer screen and I try to illustrate a little bit of what’s going to be done. The verbal medium probably isn’t the best at illustrating to parents what I’m doing with the surgery and what my result is. But I would say in the generic sense, we will never do an operation that at the end of the day where I cannot rationalize an improvement in function and quality of life. If I’m doing something where the kid just looks different, but it’s not going to change anything. In those cases, I won’t do those procedures because I just don’t see a purpose to them. I try to illustrate to the parents sort of exactly what bones will be done. What bones I’m moving, where the cuts are going to be, and what plates are going to be used, and I think that’s really hard to do on a website. That’s one of the problems with the internet. Parents take specific cases of their child and what was done and potentially complications or successes happen. Then other parents, not understanding some of the subtleties will say, “Well, my child’s having a hip operation” and can’t appreciate the differences either in the purpose of the surgery or the technique of the surgery or the rehab program afterwards. Parents look up on websites, for example, and see after hip surgery, kids are in a body cast for three months. But we don’t do that. We put kids in two long leg casts for three weeks and after three weeks, I let them get into the swimming pool. That’s sort of one of the problems with talking about how you approach a surgery in a generic sense. A parent then looking at that to extrapolate to their child and there is misapplication of information.
Brian Snyder, MD, PhD, Orthopedic Surgeon