ONFI (clobazam) CIV is a prescription medicine used along with other medicines to treat seizures associated with Lennox-Gastaut syndrome in people 2 years of age or older.

Caregiver Corner

From Seizure Disorder to LGS

Seizure Disorder

Forty-four years ago, when Bobby was 6, our journey down the path of the unknown began. Suddenly, seizures became a part of our daily lives and filled our minds with overwhelming thoughts. What's going to happen? When is it going to happen? And how do we manage the seizures? The fact that no one was able to tell us what was happening to our son was very scary. We were so young and didn’t have the information we needed to understand what was happening.

As I look back to the many times Bobby was having seizures, I wanted to know what I could do to help him. It was gut-wrenching. There I was, watching my little boy struggling to keep up and enjoy his childhood years. Because of Bobby’s seizures, I felt it was my duty to protect him and keep him safe the best I could. We eventually bought a wheelchair so that we could safely get Bobby out of the house to enjoy some fresh air and walks in the park.

As a parent, you keep looking, searching, and making changes in hopes of finding some answers, and, ultimately, a better healthcare management plan. In our case, it was a new doctor who really took an interest in Bobby and set us on a new path. After all those years of uncertainty and managing a “seizure disorder,” this new doctor diagnosed Bobby with Lennox-Gastaut syndrome (LGS) when he was 45.

For any parent, when you receive the diagnosis, you’re immediately flooded with emotions. For me, LGS was a term I had never heard of before, so my role as Bobby’s caregiver began to take shape from that point. I was now an LGS caregiver. I began to research and become as knowledgeable as I possibly could. I remember reading about LGS for the first time and having that “Aha!” moment. Bobby fit all of the symptoms and patterns. At that point in time, I felt so empowered. We finally received the answer we had been waiting for all these years.

Having a diagnosis gave us a sense of grounding—it became something we could talk about and work with his healthcare team to better manage. I was hesitant to try yet another medication, but I felt that I owed it to Bobby to try ONFI (clobazam) CIV to his existing medications. My advice to other parents of a child with LGS is that you must keep trying. After 39 years of trials and tribulations, we finally found a management plan for Bobby’s LGS that includes ONFI.

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Important Safety Information

WARNING: RISKS FROM CONCOMITANT USE WITH OPIOIDS

See Medication Guide and full Prescribing Information for complete information.

ONFI is a benzodiazepine medicine. Benzodiazepines can cause severe drowsiness, breathing problems (respiratory depression), coma, and death when taken with opioid medicines.

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Important Safety Information

WARNING: RISKS FROM CONCOMITANT USE WITH OPIOIDS

See Medication Guide and full Prescribing Information for complete information.

ONFI is a benzodiazepine medicine. Benzodiazepines can cause severe drowsiness, breathing problems (respiratory depression), coma, and death when taken with opioid medicines.

  • Do not take ONFI if you have a known allergy to ONFI or its ingredients.
  • ONFI can make you sleepy or dizzy and slow your thinking and motor skills. This may get better over time. Do not drive, operate heavy machinery, or do other dangerous activities until you know how ONFI affects you. ONFI may cause problems with your coordination, especially when you are walking or picking things up.
  • Do not drink alcohol or take other drugs that may make you sleepy or dizzy while taking ONFI without first talking to your healthcare provider. ONFI may make your sleepiness or dizziness much worse.
  • ONFI can cause withdrawal symptoms. Do not suddenly stop taking ONFI without first talking to a healthcare provider. Stopping ONFI suddenly can cause seizures that will not stop (status epilepticus), hearing or seeing things that are not there (hallucinations), shaking, nervousness, and stomach and muscle cramps.
  • ONFI can be abused and cause dependence. Physical dependence is not the same as drug addiction. Talk to your healthcare provider about the differences. ONFI is a federally controlled substance (CIV) because it can be abused or lead to dependence.
  • Serious skin reactions have been seen when ONFI is taken with other medicines and may require stopping its use. A serious skin reaction can happen at any time during your treatment with ONFI. Call your healthcare provider immediately if you have skin blisters, rash, sores in the mouth, hives or any other allergic reaction.
  • Like other antiepileptic drugs, ONFI 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 have any symptoms of depression, especially sudden changes in mood, behaviors, thoughts, or feelings, and especially if they are new, worse, or worry you.
  • Tell your healthcare provider about all of your medical conditions, including liver or kidney problems, lung problems (respiratory disease), depression, mood problems, or suicidal thoughts or behavior.
  • If you are pregnant or plan to become pregnant, ONFI may harm your unborn baby. You and your healthcare provider will have to decide if you should take ONFI while you are pregnant.
  • ONFI can pass into breast milk. You and your healthcare provider should decide if you will take ONFI or breastfeed. You should not do both.
  • Tell your healthcare provider about all the medicines you take, including prescription and over-the-counter medicines, vitamins, and herbal supplements. Taking ONFI with certain other medicines can cause side effects or affect how well they work. ONFI may make your birth control medicine less effective. Talk to your healthcare provider about the best birth control method to use. Do not start or stop ONFI or other medicines without talking to your healthcare provider.
  • ONFI oral suspension should be kept in its original bottle in an upright position and used within 90 days of first opening the bottle. After 90 days, safely throw away any unused ONFI oral suspension.
  • The most common side effects of ONFI include: sleepiness; drooling; constipation; cough; pain with urination; fever; acting aggressive, being angry or violent; difficulty sleeping; slurred speech; tiredness; and problems with breathing.

For more information, please see the Medication Guide; full Prescribing Information, including Boxed Warning for risks from concomitant use with opioids; and Instructions for Use.

You are encouraged to report negative side effects of prescription drugs to the FDA. Visit www.fda.gov/medwatch, or call 1-800-FDA-1088.