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What having a child with complex medical needs has taught me about getting good health care

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As the parent of a child with disabilities, I am all too familiar with the ins and outs of dealing with doctors, navigating the medical system and advocating for my daughter to get the best care possible. Along the way I’ve learned many lessons that have been invaluable in getting better medical care for my three typically developing children as well, lessons that can help any child. Here are some things that may help you get the best care for your children.

  • Find a primary care provider you trust. It may be tempting to find a pediatrician you like and who is convenient, or to see the pediatrician your friends use and like. But you need to be able to trust your doctor, so you will be able to turn to her for advice on anything from the best specialists to the correct course of treatment. While it is easy to write off a pediatrician you think is just okay as long as your child is relatively healthy, you never know when a more serious health condition will come up. When this does happen, it is more important to have a strong foundation of trust with your child’s doctor than to be able to get to the office quickly. 
  • Ask what your pediatrician would do if it were their child. At some point, every child will encounter a health issue where there are multiple options, whether it’s a simple choice about an antibiotic or a more serious decision about surgery or an invasive test. Doctors often give standard advice or vaguely state that the decision is up to you. They may give different advice, however, when asked what they would do for their child. When I was pregnant with my first son, I asked my pediatrician about a delayed vaccine schedule. She was accepting of different views and said she thought delayed vaccines were fine. When I asked what she would do with her own children, though, she unequivocally said she would want her children vaccinated as soon as possible according the standard schedule. I have found the same to be true for referrals. A doctor may recommend a nearby physician or even a friend, but when asked, “Is that who you would send your child to?” the answer is sometimes different. 
  • Don’t be afraid to seek a second opinion. This can be useful if you are not sure whether your doctor gave the right diagnosis, or just want some confirmation that you are on the right track with a treatment. It can be as simple as having another pediatrician in the same office (or emergency room) examine your child and talk to you. Or it may mean making another appointment elsewhere. 
  • Keep medical records accessible. In the age of electronic medical records, it can be easy to assume doctors can conveniently access them. But because of privacy laws and the reality that doctors use different systems, this isn’t always the case. I scan all of my children’s medical records and store them on Google Docs so I can access them easily, even on my phone from an emergency room. That antibiotic with the strange name your child just finished might be relevant to diagnosing a rash, or the strep throat she got weeks ago could be a clue to a new mysterious ailment. Knowing which illnesses your child had when, which treatments or tests she received, and the names of all the doctors she has seen can be helpful.
  • Ask questions. Whether it’s your child’s first cold or you are looking at a more serious medical issue, chances are you have questions. Although doctors are often in a rush to get to the next patient, you should not leave until you have the answers you need. Often the answers will help assuage fears or ensure that you are following the doctor’s orders correctly, leading to a better outcome.
  • Do your own research. Some doctors advise against consulting “Dr. Google.” While online searches can lead to scary information that may not be relevant to your child, they may also lead to finding out about children who have had similar illnesses, calm your fears or provide you with additional information that you can ask your doctor about later. Doctors know a lot and parents need to trust their expertise, but don’t be afraid to seek additional information.
  • Speak up if things are not going well. Whether you are having a problem getting an appointment, disputing a bill or missing a medical form, you should ask for help. Most hospitals have a patient advocate (although they sometimes go by different titles) and most doctor’s offices have an office manager who can help. 
  • Medical bills are negotiable. Many fees, such as the ones for routine checkups, are probably not negotiable, but larger bills may be. Review your bills to make sure there are no mistakes and to see where you may be able to negotiate. There are companies that will negotiate medical costs on your behalf. If you cannot afford some fees, such as those some offices charge for filling out school forms, see if you can get a better price. 
  • You know your child best. It can take work to get a doctor to pay attention to the subtle signs that are only evident to parents, but you know when your child is sick or in pain, even if they appear okay to others. Don’t be afraid to keep pushing if something seems wrong.
  • Keep perspective. Most childhood illnesses run their course quickly. While children may be uncomfortable, worrying does not help. Instead, focus on making your child as comfortable as possible while the illness runs its course. If something is seriously wrong, you will adjust and get through that, too.

Jamie Davis Smith is a Washington-based mother of four. She can be reached at jdavissmith03@gmail.com. Follow her on Facebook and Twitter @jamiedavissmith.

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