The best doctors are those that not only treat the whole child, but treat the whole family. The most professional doctors are those that realize that although they are the expert in their field, the parents are the expert of the child. And the most compassionate doctors are those that will listen to the parents’ concerns and go above and beyond to do everything they can to serve the child and the family.
A few weeks ago Katie got to thinking. She does a lot of thinking. This time her thoughts turned to Ryan’s physical challenges. At 6 years old, Ryan’s diagnosis of developmental delay isn’t appropriate anymore. She isn’t just delayed and she won’t just catch up. Katie wanted answers. She wanted a name, a title, a true diagnosis for Ryan’s physical disability. So the research began. It didn’t take long for Katie to land on something that seemed to fit Ryan. We decided to email her neurologist, even after she had only seen Ryan in clinic one time, and run our ideas by her. Below is our email and the doctor’s response.
Along with our email we included a list of Ryan’s other diagnoses and various factors that led Katie to the idea of cerebral palsy, much of which had to do with the abnormal formation of her brain and her still unstable gait. We met with the doctor on Friday and after talking with us and visiting with Ryan again, she gave her the diagnosis of “Hypotonic Cerebral Palsy”. We will be meeting with the pediatric rehabilitation center at CCHMC soon and they will also consider adding “Ataxic” to the CP diagnosis based on her physical movements. From there we will work with them to figure out what Ryan’s best options for therapy and devices will be. I am so grateful for Katie’s ability to think outside the box when it comes to parenting our children. Her persistence has opened new doors for Ryan and will give us a greater understanding of how to help her.
The lesson: trust your instincts about your children. You know them best. You are their experts. Doctors only see a snapshot of your child and if they aren’t willing to at least listen and consider your thoughts, it might be time to look for another doctor. There are plenty out there who are the best because they are both professional and compassionate. We are so lucky to have found one!