Researching and asking questions can help you make an informed decision when choosing a provider. It is important to know the answers to these questions before starting treatment with a subspecialist provider so you know what your responsibilities are and what to expect. Below are some suggestions of questions, and you will most likely have more of your own. Make sure to make a list of the ones that are important to you when meeting with the provider.

Meeting the Provider

• May I visit with the provider either in person or by phone to get to know them better before we set our first appointment?

Experience and Physician Practices

• Are you a pediatric or adult specialist?
• Do you have experience with a child whose diagnosis and abilities are like my child’s?
• What is your comfort level in working with (insert diagnosis)?

Roles

• How will you communicate with my child’s primary care doctor to coordinate care?
• How will you communicate and interact with the school or other services to coordinate care?

Clinic Practices and Policies

• Does your clinic have a care coordinator and what would their role inclue?
• Does your clinic provide a parent partner or parent to parent support? What would their role include?

Treatment and Assessment

• Do you prescribe medications for children that are not clinically tested on children?
• How long do you have a patient try a medication before being able to tell if it is helpful or not?
• Are there tests, labs, and/or imaging that can be done before our visit?
• Are there certain medications and/or treatments that have higher success with my child’s diagnosis?

Nephrologist

• Will I need to keep a record of symptoms or episodes (i.e. painful urination, lower back pain, blood in urine, nausea, etc.)? Are there tools that can help us do this more easily?
• Are there natural/supplement-based treatments which can help certain nephrology conditions?
• At what point would dialysis be prescribed?
• If a transplant were needed, what is the process?

Neurologist

• Will I need to keep a record of symptoms or episodes (i.e. seizures, headaches, behavioral changes)? Are there tools that can help us do this more easily?
• Do you practice prescribing a certain number of medications before alternative treatments?
• What is your medication weaning process?
• At what point is medication and/or treatment considered to be effective?
• At what point in a diagnosis and care would testing be ordered? For example, when and how often would my child need to have an EEG, CT scan, MRI, genetic testing, etc.?
• Are you experienced with alternative treatments to medications (i.e. ketogenic diet, vagal nerve stimulator)?
• Are you willing to prescribe legal medications which are not yet FDA approved for certain conditions?
• If/when my child has testing, who will review and report on the results? Will it be you, the primary neurologist, or will it be the attending neurologist on shift? Will these results be recorded in a parent/patient friendly format?

Orthopedist

• Does the practice have x-ray equipment in the clinic?
• Does the clinic have child-sized braces/splints if needed?
• If my child needs durable medical equipment such as a wheelchair or supportive equipment, can you help or refer to someone who can order this through my insurance?
• Should my child also visit an endocrinologist and monitor bone density/supplemental nutrition?
• At what point is physical therapy prescribed? Is there a PT office recommended in my area?
• If my child has a diagnosis (such as scoliosis, flat feet, or hip dysplasia), are there measures recommended to correct the condition and hopefully prevent surgery?

Gynecologist and/or Obstetrician

• Are you a pediatric or adult OB or GYN?
• What are your recommendations for birth control?
• What is your typical practice for monitoring and/or controlling ovulation cycles?
• Do you perform surgeries if needed and under what circumstances (i.e. hysterectomy)? If not, do you refer to a physician within the same practice?
• Will I need to keep a record of symptoms or episodes (i.e., menstrual cycle, behavioral changes)? Are there tools that can help us do this more easily?