Helping you care for your loved one with LGS

Issue 2

Working With Your Healthcare Team

Christina SanInocencio

Christina is the Founder and President of the LGS Foundation. Her brother was diagnosed with LGS when he was 3. Christina brings her knowledge of LGS and experience of watching her own brother transition from childhood to adolescence and adulthood. Christina is a paid consultant of Eisai Inc.

Patients with Lennox-Gastaut syndrome (LGS) often need support and services from many different professionals. These include physicians, physical therapists, social workers, psychologists, and occupational therapists,1 who help people develop or maintain daily living skills. And as a caregiver, you are automatically the point person for all members on your child’s healthcare team.

That’s easier said than done.

When your child has 5 (or more) different specialists and multiple doctor visits per month, it can be extremely overwhelming. Add emergency room visits for things like status epilepticus or injuries sustained from drop seizures, and by the end of the year, you may feel like you’ve spent more time in waiting rooms than you have in your own bed.

This is where good time management and organizational skills are helpful. With these skills, you may provide some level of order to your child’s healthcare schedule—and some level of sanity to yourself. Here are some tips for managing your time better or becoming more organized as you deal with your loved one’s LGS.

With good time management and organizational skills, you may provide some level of order to your child’s healthcare schedule—and some level of sanity to yourself.

Find a one-stop epilepsy care center

Level 4 epilepsy centers house a variety of specialists under one roof. You could go from neurologist to dietitian to psychologist in a matter of a few hours and a few floors, and have covered a variety of your child’s needs. Not all epilepsy centers may be as “full service,” but if yours is, try to take advantage. As you know, it’s a lot easier making one trip to the hospital once a month for all of your follow-up visits than to make multiple trips.

For a list of epilepsy centers in the United States, a good resource is http://www.naec-epilepsy.org. If you can’t get to an epilepsy center, look at the ideas below for tips on how technology may help.

Become an effective point person

It’s one thing to coordinate all the visits to your child’s doctors over the course of a month. It’s quite another to coordinate all the information you receive. But it’s essential. And these tips can help you do it.

notepad

Take notes at every appointment

If your hand hurts from writing or your fingers hurt from typing, that’s a good sign! Even if your notes are messy, you can always go back later and organize them.

Talking bubble

Be sure to relay major points from other specialists to the one you’re visiting at the moment

Prepare notes and specific questions ahead of time. It may also be helpful to give your doctor a call a few days before the appointment to see if there’s anything specific you should bring with you.

Use technology*

As with just about every other facet of life, your smart phone or computer can help you. Here are a few apps and Web sites that have been particularly helpful in keeping LGS families organized:

Seizure Tracker

Seizure Tracker helps organize your life as a caregiver to someone who has seizures. With it, you can:

  • manage schedules and appointments
  • log and track seizure activities as they happen
  • download seizure logs and print them out for your child's doctor

Go to App Store (Seizure Tracker is available through the Web and as a free app on the App StoreSM for iPhone®.)

My Epilepsy Diary

My Epilepsy Diary helps track your child's seizures and medications, and allows you to set up e-mail or text reminders to take medication.

Go to App StoreGo to Google Play™

Google Keep

Google Keep™ is a basic way of organizing lists and notes. The app ties to your Gmail™ or Google Drive™ account and can be accessed from anywhere through Google Cloud Storage™.

Go to Google Play™

Beesy

Beesy is an iPad® app that allows you to easily take notes. The app helps you by automatically following up on tasks through its to-do manager. The app syncs with your calendar and address book.

Go to App Store

Technology can also be useful if you can’t easily get to an epilepsy center. Telemedicine is the use of electronic communications by doctors and patients to improve healthcare not otherwise available in rural areas. Telemedicine includes two-way video, e-mail, smart phones, and other forms of telecommunications to deliver the specialty care your child needs.

Other tips

If you feel rushed at an appointment or if you forgot to ask specific questions, call the doctor as soon as you remember. You can always discuss your child’s treatment in more detail after the meeting is over.

And if you ever feel like your healthcare team is not working well together or that communication is lacking, please speak up! The doctors you see may be able to give you some additional tips or recommendations on how to bring everything and everyone together more efficiently.

In the end, communication is important to ensure a high level of coordination for your child's healthcare. A little organization and structure will make your role as point person easier.

iPad, iPhone, and iPod Touch are trademarks of Apple Inc., registered in the U.S. and other countries. App Store is a service mark of Apple Inc.

Android, Gmail, Google Cloud Storage, Google Drive, Google Keep, and Google Play are trademarks of Google Inc.

*This content is not intended to be and should not be interpreted as a recommendation for a specific product or course of action, or in place of direction from a healthcare provider. Eisai Inc. does not endorse, approve, certify, or control these external applications and Web sites and does not guarantee the accuracy, quality, completeness, or correctness of the information located at these sites. References to any specific product, service, or process does not constitute or imply endorsement or recommendation by Eisai Inc.

Reference:

  • 1. Wheless JW, Constantinou JEC. Lennox-Gastaut syndrome. Pediatr Neurol. 1997;17(3):203-211.

This Web site contains information relating to various medical conditions and treatment. Such information is provided for educational purposes only and is not meant to be a substitute for the advice of a physician or other healthcare professionals. You should not use this information for diagnosing a health problem or disease. In order for you to make intelligent healthcare decisions, you should always consult with a physician or other healthcare provider for your, or your loved one's, personal medical needs. All quotes included in this Web site represent the individual experience of some doctors, some patients, and their caregivers. Individual responses to treatment may vary.

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