Partnering With Your Healthcare Team
By Steven Wolf, MD and Patty McGoldrick, NP

Over the years, here is what we’ve found works best for parents, people with LGS, and doctors as we start and continue treatment of people with LGS. We think these tips and suggestions will help you work with your healthcare team more effectively.

When you start with a new doctor

On your first visit to your new doctor, bring your old files and test results with you. This will help educate the doctor on your loved one’s history and status. It also helps ensure that tests that have already been done won’t be repeated. You will find it easier to continue treatment instead of feeling like you’re starting all over again.

Between doctor visits

We recommend you keep an accurate seizure diary. In it, you can capture things like:

  • Descriptions of seizures your loved one has
  • How frequently your child has seizures
  • How long seizures last
  • Anything that might have triggered the seizure
  • Medicines your child is taking and the doses for each

There are many paper-based seizure diaries you can use, including one on BANZEL.com, as well as many apps you can download to your smartphone, computer, or tablet.

Some apps allow you to take videos of seizures. This use of technology has revolutionized the way doctors who treat epilepsy practice medicine. Healthcare providers can then see exactly what occurs during a seizure and what parts of the body are involved. This video evidence could be a great help for your child’s doctor in planning treatment.

From many of these apps, you can create charts of seizure activity and either mail or e-mail them to your doctor, or share them at your next doctor visit. Tracking and recording seizure activity could also be helpful to your doctor in planning the right treatment for your child.

At the doctor visit

For routine interaction with your healthcare team, there is no substitute for face-to-face contact. A phone call may be a good way to contact your doctor in case of an emergency. An e-mail might work for a random question, but nothing beats a face-to-face visit. Lots of subtle nuances can be picked up at an appointment that may not be communicated when you can’t actually see the other person.

Come prepared! Bring a list of questions you want to ask. Your doctor will appreciate the engagement and will feel better knowing how involved you are in treatment. You’ve heard the saying “no question is stupid.” That’s the truth! Don’t feel embarrassed or reluctant to ask anything that’s on your mind. Most doctors will be happy to answer your questions.

And it pays to be specific. Asking “Is there anything I should have asked that I didn’t?” doesn’t help a doctor answer your questions or concerns. He or she won’t know what your concerns are from this question. Instead, here are some useful questions that may address some of your specific concerns:

  • Can you explain how the medicines my loved one takes work together (or affect each other)?
  • How long should I continue this dose before I call you?
  • What are possible side effects?

To download a conversation starter with questions to discuss with your doctor, visit BANZEL.com.

Dr Wolf and Ms McGoldrick run a collaborative partnership in the care of people with epilepsy at a comprehensive epilepsy center in New York.

Dr Wolf and Ms McGoldrick are paid consultants of Eisai Inc.

What To Expect From Treatment
Seizures Associated With LGS
Partnering With Your Healthcare Team
Possible Seizure Triggers
Creating a Safe Home Environment
Outside-the-Home Activities
How Epilepsy Centers Can Help