A Mother Who Never Gave Up: A Personal Epilepsy Case Study About Observation, Medical Records, and Hope
Updated: Nov 5
Written by Chotimanee Guandique
ParentsOfBraveHearts | Parent Education & Family Resources
Educate • Empower • Inspire
To Every Parent Who Is Tired, Exhausted, and Still Hoping
If you are a parent of a child with special needs and complex medical conditions, I want you to know something: I see you.
I know you may be exhausted from hospital visits, medications, appointments, school meetings, and sleepless nights. I know you may be hoping that one day your child’s health will improve, even when the journey feels overwhelming.
Please remember that you are not alone.
Today, I want to share a personal case study about a mother who continued to ask questions, observe changes, review medical records, and seek answers when her child’s health became more difficult to manage.
That mother is me. I am a mother of a child with epilepsy, and I have never given up on my son.
1. When a Child’s Health Begins to Change
My son has epilepsy and experiences tonic seizures. Over time, I became increasingly concerned about changes in his seizure activity and overall health.
During the past four years, his health became more difficult to manage following medication changes and a change in his medical care. I began asking myself questions.
When did his seizures begin to change?
What types of seizures was he experiencing?
Did the changes happen before or after a medication was introduced?
Were there patterns in his EEG results?
What questions should I bring to his neurologist?
I knew that every child responds differently to medication. A medication that helps one child may not work the same way for another.
I did not want to make assumptions. I wanted to understand my son’s medical history better and share my observations with his healthcare team.
2. I Started Organizing Four Years of Medical Records
I downloaded my son’s available medical documents and EEG reports, going back to the earliest records I could access.
I created an Excel spreadsheet to organize the information, including:
EEG dates and findings.
The names and dates of medications, when available.
Changes in seizure frequency and duration.
The types of seizures documented by healthcare professionals.
The doctors who interpreted the EEG reports.
Questions and concerns that needed follow-up.
As I reviewed the records chronologically, I noticed that tonic seizures appeared in the records after a particular medication had been introduced.
This observation raised an important question for me: Could the medication change be related to the changes in my son’s seizure activity?
I understood that a timeline alone could not prove that a medication caused the change. However, it gave me specific information to discuss with his doctors.
I wanted to bring more than my worries to the appointment. I wanted to bring organized information.
3. When My Concerns Were Not Resolved
I discussed my concerns with my son’s neurologist and the neurologist’s nurse practitioner.
The treatment plan included increasing the medication I was concerned about. I understood that his medical team was trying to improve seizure control, and I agreed to a trial under their guidance.
However, over the following weeks, my son’s health became more difficult to manage. He experienced frequent seizures at school and at home.
At one point, I was observing approximately three to four seizures in the afternoon, two in the morning, and two at night.
I was frightened and concerned about his safety and quality of life.
I continued communicating with his healthcare team, but I also decided to seek a second opinion.
Seeking another medical opinion was not about giving up on one doctor. It was about making sure I understood my child’s treatment options and could ask additional questions about his changing condition.
I consulted another neurologist and spoke with a private nurse practitioner. I followed the treatment guidance provided through the second opinion.
I continued observing my son closely and documenting what I saw.
4. The EEG That Gave Me Hope
Yesterday, my son underwent another EEG.
Before this test, he had been experiencing tonic seizures approximately four to six times a day, with individual episodes often lasting around 13–20 seconds, based on my observations.
During the recent EEG, three tonic seizures were recorded:
Two lasted approximately 2–3 seconds each.
One lasted approximately 10 seconds.
These findings were consistent with what I had been observing at home: his tonic seizures appeared shorter and less frequent.
After reviewing the EEG, the interpreting neurologist told us that we could go home and did not need to stay for further observation. I was also told that no absence seizures or seizure clusters were observed during that recording.
I felt relieved and hopeful.
For a mother who had spent so much time worrying about her child’s health, seeing these changes felt significant.
However, I understand that one EEG represents a period of observation. It cannot guarantee that seizures will not happen later, and the results do not establish why the improvement occurred.
I will continue working with my son’s healthcare team and monitoring his progress.
For our family, this was an encouraging step forward. Not the end of the journey.
5. What This Experience Taught Me as a Mother
This experience reminded me of several important lessons.
Observe changes before and after medication adjustments
Keep track of seizure frequency, duration, recovery, sleep, appetite, mood, energy, and behavior. Write down when a medication is started, stopped, or adjusted under medical supervision.
These observations may help your healthcare team recognize patterns and assess treatment effectiveness or possible side effects.
Keep copies of medical records
Organize EEG reports, medication lists, hospital discharge summaries, and relevant appointment notes. A chronological timeline can make it easier to discuss changes with your child’s healthcare professionals.
Ask questions when something does not seem right
You are allowed to ask why a medication is being recommended, what benefits are expected, what side effects to watch for, and when the treatment plan should be reassessed.
Consider a second opinion
If your concerns remain unresolved, your child’s seizures continue, or treatment is difficult to tolerate, ask whether an epilepsy specialist or another qualified neurologist could provide an additional assessment.
Work with your child’s school
When a child has seizures at school, accurate documentation and communication are essential. Staff should follow the child’s seizure action plan and record what they observe, including the time, duration, symptoms, recovery, and any actions taken.
Descriptions of an episode are important, but school staff should not be expected to diagnose a seizure type without appropriate medical evaluation.
6. A Practical Checklist for Parents
Before your child’s next appointment, consider preparing the following:
☐ An updated list of medications, doses, and medication changes.
☐ A seizure diary recording dates, times, duration, symptoms, and recovery.
☐ Notes about sleep, appetite, mood, behavior, and energy.
☐ Copies of EEG reports and other relevant medical records.
☐ A timeline of important health changes.
☐ School seizure logs and reports from caregivers.
☐ Questions about possible medication side effects and treatment goals.
☐ Questions about whether further evaluation or a second opinion is appropriate.
Never stop, skip, or change anti-seizure medication on your own. Sudden changes can be dangerous. Contact your child’s healthcare professional about concerns, and follow the prescribed treatment plan unless the clinician advises otherwise.
7. Reliable Resources for Parents
You do not have to figure everything out alone. These organizations provide educational information and practical tools.
Epilepsy Foundation - Seizure Diaries
Learn how to track seizures, medication changes, side effects, and possible patterns.
Epilepsy Foundation - Seizure Action Plans and Forms
Find seizure observation forms, seizure diaries, and action plans that can support communication between families and schools.
Centers for Disease Control and Prevention (CDC) — Epilepsy Treatment
Learn about treatment options, medication safety, and when to discuss persistent seizures or side effects with a healthcare professional.
Epilepsy Foundation — Helpline
Call 1-800-332-1000 for epilepsy information, support, and referrals to resources.
These resources are educational and do not replace individualized medical advice.
8. Other Case Studies ParentsOfBraveHearts Can Explore
This experience also inspired me to explore other research-informed case studies that may help parents and caregivers.
Case Study 1: When a School Reports Multiple Seizure-Like Episodes
What should happen when school staff report repeated episodes? Explore documentation, communication with parents, the seizure action plan, and coordination with the child’s healthcare team
Case Study 2: When a Child’s Seizures Change After a Medication Adjustment
Explore how families can create a medication timeline, document changes, report concerns, and work with clinicians to evaluate possible side effects or changes in seizure control.
Case Study 3: Preparing for a Second Neurology Opinion
Explore how parents can organize EEG reports, medical histories, medication lists, and questions to make appointments more productive.
Case Study 4: When Parents and Schools Describe an Episode Differently
Explore the importance of objective observations, clear communication, and medical follow-up when an episode is described differently by family members and school staff.
Case Study 5: Supporting a Nonverbal Child Who Cannot Explain Symptoms
Explore how parents and caregivers can document changes in behavior, sleep, eating, energy, and recovery while recognizing that behavioral changes alone cannot establish a medical diagnosis.
These are proposed topics for future educational case studies, not separate verified patient cases. Each would need appropriate evidence, privacy protection, and clear distinctions between personal observations and research findings.
A Final Message to Parents
To every parent who is exhausted, worried, and still showing up for your child: I know how difficult this journey can be.
You may spend hours researching, organizing documents, attending appointments, speaking with school staff, and trying to understand what your child cannot always communicate.
Some days, you may feel frightened. Other days, you may feel hopeful. Sometimes, you may feel both.
Please remember that you do not have to know every medical answer. You do not have to manage everything alone.
Your observations matter. Your questions matter. Your child’s experiences deserve to be heard.
Keep records. Ask questions. Seek clarification. Request another opinion when appropriate. Work with qualified professionals who listen to your concerns and help you understand the available options.
Most importantly, never confuse being a strong parent with having to do everything by yourself.
I am sharing my story because I want other parents to know that there can be hope even during difficult medical journeys. Every child is different, and every treatment journey is different. What matters is continuing to seek the right support for your child.
I am Freddy’s mother. I am still learning, still observing, still asking questions, and still advocating for my son.
I have never given up on him, and I will continue doing my best to help him have the safest and healthiest life possible.
With love and hope,
Chotimanee Guandique
Founder & Family Resource Connector
ParentsOfBraveHearts
Disclaimer: This article describes my family’s personal experience and is intended for educational and awareness purposes. It is not medical advice and does not establish that any medication caused a change in seizure activity. Treatment decisions should be made with qualified healthcare professionals. Individual results and experiences may differ.
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