Concerns About My 4-Year-Old with Myoclonic Epilepsy
I am writing to share my experience with my 4-year-old daughter, who was diagnosed with myoclonic epilepsy on December 20, 2025. This diagnosis followed a series of myoclonic seizures she suffered the previous day and overnight. An EEG conducted during this period confirmed the seizures, leading to her treatment with a 4.1ml dose of Keppra. After this initial treatment, she was fortunately seizure-free until December 29, 2025. During a conversation with her neurologist on December 30, we made no adjustments to her medication. From December 30, she experienced a seizure-free stretch until January 28, 2026, when she had one or two myoclonic seizures in the evening. Shortly afterward, on January 31, she experienced approximately six myoclonic seizures. This prompted me to contact the neurology team, and we agreed to increase her medication to 5ml that evening. Unfortunately, she had two more myoclonic seizures on the evenings of February 1 and February 2. The morning of February 3 also saw her having two myoclonic seizures; despite my attempt to reach out to the neurology office, I received no response. That evening she had two more seizures. On February 4, while my husband was at work, I received a distressing call. He was frantic because she was experiencing her first tonic-clonic seizure. I hurried home and accompanied her by ambulance to the local emergency room, where a CT scan revealed normal results. She was stabilized and later discharged. Following discussions with her neurologist, we decided to increase her dosage to 6ml of Keppra. However, the next morning started off well but took a turn when my daughter awoke. She began having myoclonic seizures again shortly after rising. This led us to make the decision to go to a downtown hospital for her admission. That night, while undergoing an EEG, 12 myoclonic seizures were recorded but no new seizure types appeared. They conducted a sedated MRI, which showed no significant concerns. Tests were performed to check for other illnesses such as the flu or Covid-19, all returning negative results. A blood sample indicated her Keppra levels were at 12, significantly lower than the typical therapeutic range of around 40, suggesting she might be metabolizing the drug excessively. We were advised to start her on Depakote sprinkles in addition to the Keppra, and we were provided with a rescue nasal spray. Despite these interventions, we observed that she was lethargic and unresponsive. As we prepare for genetic testing, I find myself increasingly worried that she might be facing severe conditions like Doose Syndrome or Progressive Myoclonic Epilepsy, both of which are concerning. The neurologist assured me it could not be Juvenile Myoclonic Epilepsy, leading me to wonder if it could simply be myoclonic epilepsy. I hold onto a glimmer of hope that she may outgrow this condition. It's bewildering for me to confront how suddenly my previously healthy and thriving toddler is now grappling with these issues. Born close to 42 weeks and meeting all developmental milestones, she is a bright, funny, and intelligent child who enjoys activities like tumbling, soccer, and t-ball. There is no family background of such conditions, and she has not suffered any illnesses or head injuries that could explain this onset. We feel overwhelmed and in urgent need of clarity regarding her situation. Why do we seem so atypical in this journey? Should I consider seeking a second opinion? Thank you for taking the time to read my account.
Answers (1)
2/13/2026, 4:01:00 AM
OpenHealth AI
I understand how distressing and overwhelming this situation must be for you and your family. Your daughter's myoclonic epilepsy, particularly with the recent developments and seizures, requires careful monitoring and a proactive approach. Let's break down the main points and outline actionable steps.
Main Points:
- Seizure Management: Your daughter has had escalating seizure activity despite medication adjustments, indicating the need for close monitoring and possibly further evaluation.
- Concerns about Medication: The discrepancy in her Keppra levels suggests that she may metabolize the medication quickly, which can impact its efficacy.
- Next Steps: Consider proactive management strategies and further collaboration with your medical team.
Explanation:
Myoclonic epilepsy can present in various ways and often requires a tailored medication approach to manage seizures effectively. Your daughter's experience with both myoclonic and tonic-clonic seizures, as well as her response to medication changes, indicates that her treatment may need ongoing evaluation. It's understandable to feel anxious when you see such substantial changes in a previously healthy child.
The fact that the Keppra level was lower than expected raises the possibility that her body is processing the medication differently. Transitioning to Depakote along with Keppra is a standard approach to manage treatment-resistant epilepsy, and observation of her response to this combined therapy is essential.
Prioritized Next Steps:
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Monitoring Seizure Activity: Maintain a detailed seizure diary to track frequency, duration, and any specific triggers you notice. This information can be invaluable to her neurologist.
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Medication Response: Document any side effects or changes in her behavior (e.g., lethargy, unresponsiveness) after starting the new medication. If her lethargy continues, notify her doctor promptly.
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Communication with Neurologist: Ensure that you have clear and open lines of communication with her neurologist's office. If you feel communication is lacking, do not hesitate to request a follow-up call or visit. Express your concerns directly, particularly regarding her responsiveness and seizure frequency.
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Second Opinion: It’s completely reasonable to seek a second opinion, especially considering the complexities of her case. A fresh perspective may provide additional insights or alternative treatment options.
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Genetic Testing Preparation: As you prepare for genetic testing, make a list of questions and concerns you have so you can discuss them with the genetic counselor or neurologist during your consultation.
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Support Network: Connect with support groups for parents of children with epilepsy. These networks can provide emotional support and practical advice based on shared experiences.
Conclusion:
Your daughter is in a challenging situation, and it's entirely appropriate to seek answers and advocacy for her health. Continue to monitor her condition closely, keep an open dialogue with her healthcare team, and consider expert opinions as needed. You are doing everything you can to support her well-being, and that is commendable. Please take care and remember that support is available for both you and your daughter.
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