Putting together a medical team when you have a child is difficult whether you have to manage extra medical needs or not. Sometimes, depending upon where you are, choices are limited. Finding a primary care doctor for some is easy. Griffin started doctoring with my family practice doctor who had been my primary care doctor since I was little. That was a no-brainer. Then Reese came along and we entered a whole new world of medical professionals. Putting together a team that we trust and that trusts us has resulted in a few “not going backs” and “never agains.”
I have learned a few things along the way, these last 11 years. There is no right or wrong way to find a physician for your kids. There are important things to think about. As with all blog lists, another mom would probably have a very different Top 5. Take this as you will.
1) Lay out expectations from the very beginning.
When we “hired” our pediatrician, I was very straightforward about what my expectations were. I promised I would not call for a broken fingernail, but when I called or contacted the office, I expected a call back quickly. Doctors are protected by a fortress of nurses and scripts from the nurse-online. Direct access to primary care physicians is limited. I totally get it. Doctors are BUSY. To have to personally manage all their patients outside of direct visits would have them living at the clinic. That being said, it was important to me that my expectations of expediency were laid out from the beginning. That has served us well.
2) It’s okay to not go back.
We’ve had several physicians along the way who we have not clicked with. I have learned to trust my first impressions; they are usually right. I try hard to give people all the chances in the world, but sometimes I just don’t like a doctor or medical professional. That is okay. In most instances that person is probably loved by many patients and families. This is a difficult situation if you have limited choices regarding medical professional availability.
3) It is completely acceptable to want a second opinion.
I am very wary of doctors who are not willing to refer or do not support a request for a second opinion. When I work with families in my job as a pediatric speech therapist, I realize that I don’t know it all. There are SLPs in my clinic and all over the world that know more about certain things than I do. (One might argue they know more about most things than I do.) If I am not sure what direction to go with therapy, pulling in another therapist for another set of eyes will either confirm what I am doing is right or give me a different avenue to try. That is how I feel about doctors. Either another physician may have something that helps more or will confirm what we are already doing is right.
4) You can have different philosophies than your child’s physician.
One of the next choices for treating Reese’s seizures is a “simple” brain surgery called a corpus callosotomy. It would be palliative; the brain would rewire itself in 3-5 years, so the seizures would come back. We are not sure what affect this would have on Reese’s already limited cognition. We won’t do that at this point; Dr. D would try to convince us to. His job is to fix the seizures and offer every option to do that. Our job is to protect R’s and our quality of life. He knows our philosophy and we know his. It doesn’t affect his care of R, nor does it affect our opinion of him.
5) Last, but not least, visits with a physician should feel like a conversation about your child.
We bring to the table what we know; our physicians bring to the table what they know. They know a lot more about medicine and medical science than we do. We know more about our kid. When we leave a visit, I always feel like it’s been a two sided conversation in which we’ve made a good plan for going forward. Doctors who have talked at us not with us have not been kept on our team.
We have brought Reese to physicians all over the US. Not because we have been doctor shopping, but because we’ve brought in second and third opinions to help us figure out how to best manage very complicated medical issues. I don’t need the most experienced physician on our team. Our neurologist was the “new guy” when we started with him. He had excellent experience, but he was the least experienced at his clinic. He became an integral and vital member of the vast team of people that have helped keep Reese in as good a spot as possible. There have been bumps; relationships, even with doctors, are hard, but we trust that he has Reese’s best interest at heart.
Trusting people to care for our kids is hard. Trusting your gut as a mama is important. We know our kids the best. Find doctors and nurses that don’t minimize your concerns and that you can trust if they tell you to not worry. You may not have to visit or interact with your kids’ physicians as much as we do, but you and your kids deserve excellent care.