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

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 paediatrician you like and who is convenient, or to see the paediatrician 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 paediatrician 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 paediatrician 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 paediatrician 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.

- 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 paediatrician 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. - 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.- 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.

- 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.

- 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.

• Smith is a Washington-based mother of four. She can be reached at jdavissmith03@ gmail.com. — WP-Bloomberg

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 paediatrician in the same office (or emergency room) examine your child and talk to you. Or it may mean making another appointment elsewhere. Jamie David Smith, writer