Lennox-Gastaut Syndrome: A Severe Form of Epilepsy
can seem overwhelming, but
it is essential for your child’s
well-being.
Your Medical Team
If your child has a severe type of epilepsy such as Lennox-Gastaut syndrome, you will be spending a lot of time with doctors and other medical professionals. Some will probably be specialists, with tongue-twisting-titles such as epileptologist (pronounced: Ep-pee-lep-tol-o-gist) and neuropsychologist. Finding the right doctors, scheduling appointments and keeping track of the information and instructions they give you can seem overwhelming, but it is essential for your child’s well-being.
For many families, the best way to handle these challenges is with a “team” approach. As the manager of your child's medical team, your job is to recruit the best people you can find and make sure they are doing everything they can to help your child. You also need to support them, by providing them with information on how your child is doing. It is also vital that you make sure your child gets the right amounts of medicine, sleep and anything else that is recommended, and that you ask questions when you are confused or concerned.
Click here to find a tool you can use to record the frequencies and types of seizures your child experiences.
Remember — you want people who are not only medical experts, but teammates who are there when you need them. Click here for an overview of the types of doctors you may need on your team, tools for finding them and tips for making the most of each doctor visit.
