Prepping For Your Child’s Specialist Visit: A Toolkit

Currently, we are booking months out in our Sleep Clinic. This is a common problem for parents and families given that fact that there aren’t a lot of pediatric specialists in many fields. If you are anxiously awaiting a trip to see a pediatric specialist for your child, here is a toolkit I put together to help you get the most out of your visit.
In my clinic, I see kids with a wide variety of problems. Some of these children have longstanding problems which are complex. They have seen multiple physicians and have had many hospitalizations, and tests. Believe it or not, some families are better than others at going to the doctor. How so? The more successful parents are organized and good at asking questions. They provide me with a written  summary which is easy to read, no longer than a few pages.

Whether or not your child has chronic medical problems, you can use some of the strategies of families with medically complex children to have a visit which is unrushed and thorough, and produces a plan of action which you understand clearly. Such a strategy is helpful at the primary care office, as Dr. Heidi Roman wrote in a blog post. I’m going to divide my recommendations into those for anyone, and those for parents of children with complex medical needs.

For any family going to a first specialist visit:

  1. Be clear about why you have come to the specialist and what you hope to get out of the visit. Believe it or not, I occasionally see families who are unsure of why they have been referred. This makes it hard for me to help them.
    1. MOST IMPORTANT: What questions do you want answered? Your three most important, maximum. Let the provider know up front what you want to know.
  2. Bring a video/picture/recording: This is so helpful for events that may not occur in the office. In Sleep Clinic, recordings of a child’s unusual behavior at night can help me tell the difference between, say, night terrors and nocturnal seizures. When I see patients for breathing problems, recordings of snoring, noisy breathing, cough, or wheeze can be really helpful. 
  3. Keep a log:  Whatever you use for a calendar, write down when your child’s symptoms are good or bad. What triggers it? What makes it better? I’ve observed that logging a problematic event or behavior tends to make it more manageable. If you want, you can use the PEDIATRIC SLEEP LOG I use in older children and adults. It is especially important to log any changes you have tried, be it medications or behavioral changes. If you want to see how useful this can be, check out Katie McCurdie’s account of how creating a visualization of her medical problems over time helped her at the doctor. (Thanks to Bertalan Meskó for writing about this and Katie for letting me share it)

    A graphic designer uses her skills to understand her disease. Your log will probably not look this good.
  4. List of medical problems, prior surgeries, and hospitalizations.
  5. List of medications, including dose, frequency of use, and how administered. A list is great. If you are not sure about the details, just bring all of the medications in a bag and I’ll sort them out.
  6. List of allergies, especially for medications. When did this occur? What was the reaction? How severe was it?
  7. Bring a list of other medical providers including your child’s pediatrician, other physicians, school nurses, counselors, etc. If you have email or phone numbers, include it. You may need to sign a release if the other providers are at a separate institution.
  8. Ask for the doctor to send you a copy of his/her note. You can add this to your file and clarify any inaccuracies or questions when you see them next.
  9. Come up with a list of questions in advance. Important questions to ask: what do you think my child has? What are the next steps in figuring this out? When should I contact you? When should I worry?
  10. Ask for a written plan before leaving the office. I try to make sure that every family leaving my office has a short copy of the plan including the best way to contact me (email for casual questions or non-urgent follow-up, phone for time dependent follow-up, emergencies, or night or weekend concerns). If the physician cannot complete it right then, ask for it to be emailed for faxed to you the next day. Don’t leave the office until you understand this.
  11. Make sure all prescriptions are taken care of, either electronically or by giving you a script.
  12. Make sure the physician knows the best way to reach you for follow-up. If I order a chest x-ray, I ask for the phone number for me to reach the family at that day. 
  13. Clarify when you should see the physician again, and make an appointment before you leave the office. 

If the office sends out a questionnaire, please fill it out and bring it in. If they do not provide a questionnaire, I’ve created a short  document you can use to organize your thoughts. Parent toolkit specialist visit Parent toolkit specialist visit. Change the details and fill it in with your child’s information. This seems a little tedious, but I guarantee that it will help you advocate for your child more effectively and start a better partnership with the physician.
UPDATE: Dr. Somsak, who blogs over at The Pensive Pediatrician, had some suggestions which dovetail with some recent thoughts of mine. Specifically, bring entertainment and a second adult for help and moral support. I would also add snacks to the list. Finally, if at all possible, leave the other kids at home, especially if you have younger children, so that you can focus on the matter at hand.
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