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

A Change That Resulted in Relief

Talking with your doctor about LGS

There came a time in our lives when both my husband and I realized that we needed to make a change on Adam’s behalf. We had reached an impasse with his current doctor and felt that we needed to find a new physician who could better care for our son. It was by coincidence that we were fortunate enough to be introduced to a wonderful epileptologist by a parent of a child with epilepsy. I remember that moment so vividly.

Meeting the doctor was a welcome breath of fresh air. She was kind and passionate, just what we had been longing to find. She immediately connected with Adam and provided the healthcare that had been missing. She did not object to listening to every detail of his history that came pouring out of us—when his first seizures started, when they disappeared, when they came back with a vengeance, and when he experienced new kinds of seizures.

It was this change that allowed our family to be able to learn, grow, and engage with a new Lennox-Gastaut syndrome (LGS) support team—and for that, I am grateful. Our relationship helped ground us, and we worked as a team. Just as much as we wanted to help make Adam’s healthcare better, she wanted that too.

She then proposed a change in Adam’s treatment plan and told us that he would be a candidate for a study of a medication called ONFI® (clobazam) CIV that could be added to his current treatment plan. We were excited to try something that might help. A week went by with no seizures—then 2 weeks, then a month, then 3 months. He was still having tonic-clonic seizures, but he wasn't having certain other seizures. For a while, we tried to temper our excitement and not get our hopes up, but his seizures are managed.

Over the years of living with LGS, I have learned how important it is to work with Adam’s healthcare team to establish a healthcare management plan that works best for him. And as his caregiver, having this support has helped to relieve some of my worries. It has felt so good to finally have a seizure management plan that works for him.

LGS has taught our family to delight in the little things in life. And as an LGS caregiver, I have learned to relish his laugh, his smile, his voice, and, of course, the sometimes stubbornness of a teenager!

To all the other LGS caregivers out there—I urge you to never give up, as I am optimistic that with the right balance of support, knowledge, and patience, your hopes are within reach.

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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.