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.
We recommend you keep an accurate seizure diary. In it, you can capture things like:
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:
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.
BANZEL (rufinamide) is a prescription add-on medication approved for the treatment of seizures associated with Lennox-Gastaut Syndrome (LGS) in pediatric patients 1 year of age and older, and in adults.
Patients with a history of Familial Short QT syndrome should not be treated with BANZEL. Talk to your healthcare provider if you are unsure if this affects you or your loved one. BANZEL has been shown to reduce the QT interval. Caution should be used when administering BANZEL with other drugs that shorten the QT interval.
All medications to treat seizures, including BANZEL, may cause suicidal thoughts or actions in a very small number of people, about 1 in 500. Call your healthcare provider right away if you or your loved one experiences new or worsening symptoms of depression, unusual changes in mood or behavior, thoughts or actions about suicide or self-harm, aggression, agitation, anger, anxiety, or irritability.
Use of BANZEL has been associated with side effects such as sleepiness or feeling tired, difficulty with coordination, dizziness, and problems with walking or movement.
Alcohol, in combination with BANZEL, may increase or worsen these side effects.
Call your healthcare provider if you or your loved one experiences a rash. This can be a sign of a more serious condition, such as multi-organ hypersensitivity reaction.
You or your loved one should take BANZEL only as prescribed. Do not stop taking BANZEL without first talking to your healthcare provider. Stopping BANZEL suddenly can cause serious problems.
Tell your healthcare provider about all the medications you or your loved one takes, including prescription and non-prescription medications, vitamins, and herbal supplements. Using BANZEL with certain medications can affect each other, causing side effects.
In studies, the most commonly observed (≥10%) side effects with BANZEL were headache, dizziness, feeling tired, sleepiness, and nausea.
Important Information for Women
BANZEL may make hormonal contraceptives (birth control pills) less effective. Additional nonhormonal forms of birth control are recommended when using BANZEL.
Healthcare providers should be informed if patients are pregnant or planning on becoming pregnant.
Also, BANZEL is likely to be passed through breast milk to the baby and could cause serious side effects in the baby. A decision should be made whether to discontinue nursing or discontinue the drug, taking into account the importance of the drug to the mother.
Patients who are pregnant are encouraged to enroll in the North American Antiepileptic Drug Pregnancy Registry. This can be done by calling the toll-free number 1-888-233-2334. Additional information about the registry can be found at www.aedpregnancyregistry.org.
There are risks associated with the use of BANZEL that you should know about. We encourage you to talk to your healthcare provider about these risks.
Please read the full Prescribing Information and discuss it with your doctor or healthcare professional.
To report suspected adverse reactions, contact Eisai Inc. at 1-888-274-2378 or the FDA at 1-800-FDA-1088 or www.FDA.gov/medwatch.
The health information contained herein is provided for educational purposes only and is not intended to replace discussions with a healthcare professional. All decisions regarding patient care must be made with a healthcare professional, considering the unique characteristics of the patient.
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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