When it comes to caring for a child with cerebral palsy, there is no doubt that a reputable physician and a network of therapists are the best possible allies for a parent to have.
However, in the current state of our country’s overworked healthcare system, it can sometimes feel like finding a good doctor is like looking for a needle in a haystack.
Since no two cases of cerebral palsy are alike, it is vital as a parent to feel confident that your child’s physician understands their case inside and out, and that every recommendation he or she makes is truly in your child’s best interest.
Unfortunately, in many healthcare systems around the country, the majority medical professionals just don’t have the mental or emotional bandwidth to connect with their patients in a way that fosters trust, respect and, most importantly, genuine and consistent improvement. All too many parents find themselves paired with a doctor to whom cerebral palsy is simply a generic set of symptoms.
Dr. Joseph Dutkowsky, MD, associate clinical professor of orthopedic surgery at Columbia Medical Center in New York City, confirmed that perception.
“The image that comes to mind when most people hear the words cerebral palsy is a child with braces, standing up with the support of a white-coated doctor.”
The problem only multiplies as the child grows older, Dr. Dutkowsky added. Though half of all Americans living with cerebral palsy are adults, the medical system is often at a loss as to how to care for them.
“Providers don’t know what to do with a 35-year-old woman with CP who wants a checkup.”
If you have struggled to find a healthcare provider who meets your specific needs, whether you are a parent of a child with cerebral palsy or an adult living with the disease, be assured that the help you need is out there!
Finding the right doctor to help you in your journey with cerebral palsy takes perseverance, a buoyant sense of optimism, a solid understanding of your needs and the determination to make sure those needs are met.
Nobody but you can really decide whether a physician or therapist is right for you or your child. That is why we’ve created the following checklists to help you assess your needs and narrow down your options.
Checklist for Parents
You know your child better than anyone. Your doctor should be receptive to your observations and ready to explore any concerns you might have.
As your child grows, their specific symptoms will begin to show. They could be anything from gastrointestinal issues to speech impediment to cognitive problems. Your doctor should be able to refer you to reliable specialists who can offer help with these conditions.
We recently read a blog article by a parent who reported that her daughter’s doctor, upon diagnosing the infant with CP, handed the mother a stack of brochures that looked as though they came from a mimeograph machine about 20 years old! This is one extreme example, but it proves the point that when it comes to current knowledge about cerebral palsy and its forms of treatment, not all doctors are created equal. Your child deserves someone who is not only informed, but is constantly learning whatever they can in order to serve patients well.
All children need a good diet, exercise and interaction with others in order to thrive. If a doctor’s first response to symptoms is to pull out the prescription pad, he/she is not thinking of your child’s overall health.
It is entirely understandable that, as a parent, you want as clear an idea as possible of what the future holds for your child. Will they be able to walk, talk, interact with the world around them? What are their chances for a long and healthy life? It might seem counterintuitive, then, that a doctor who offers numerous or specific predictions about your child’s future is actually less reliable than one who says little. The truth is that very little can be predicted, positively or negatively, for any single case of cerebral palsy. As one blogger writes, “I have learned that the CP journey is a lesson in repeated acceptance of an unknown future, while simultaneously accepting and managing your child’s present conditions.
” Your child needs a doctor who understands this and is ready to work with whatever changes your child’s life brings.
This is someone with whom you and your child will have a long-term relationship—you’ll be seeing a lot of each other. Not only that, but will also have a large impact on your child’s self-esteem as he or she grows up. It is imperative not only for your child’s physical health, but also for their mental and emotional health (and yours, too!) that they receive care from a doctor who makes them feel understood, respected and valued as a person with cerebral palsy.
Checklist for Adults with CP
When CP patients reach adulthood, they sometimes begin to experience pain in different parts of their bodies or of a different nature from when they were children. Your doctor should understand this and not refer everything you experience back to your childhood.
For your long-term health, diet and exercise should be the first means of treating pain and worsening of symptoms. If your doctor hears you complain of pain and immediately pulls out the prescription pad, he/she is not truly thinking of your overall health.
Some physicians abide by a “no pain, no problem” policy, not realizing that sometimes pain is the last thing to show up. Some cerebral palsy patients experience cumulative effects throughout the course of their life. Doctors must be trusted to monitor your condition and check during each visit for muscle degeneration, stress on joints, organ performance, etc.
Your doctor should be taking the time to thoroughly audit your health. From dentistry to neurology to psychology, cerebral palsy can include many side effects that patients may not know to look out for.
All adults need routine medical care throughout their lives. Your doctor visits should not revolve around your CP symptoms only—the doctor ought to transition to other things like reproductive health, cholesterol levels, nutrition, etc.
At the end of the day, your instinct is the most important aspect of choosing a healthcare provider. Do your research, and don’t be afraid to “shop around” until you find the right person. After all, your doctor really is your “life partner”—a unique relationship whose role is to support you in meeting the challenges of cerebral palsy and creating a lifestyle of happiness and fulfillment.