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, 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.