Being the Best Caregivers We Can Be with Good Record Keeping

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Our epilepsy experiences began at the birth of our second oldest who had obvious struggles from the onset, but for which we were left without a name, a label, a condition, or anything to explain the barriers she was facing … for many years. Subsequently, we had no targeted treatment to provide her that addressed the underlying issue head-on during this critical developmental time. Excellent record keeping was our key to obtaining her primary diagnosis, despite having subclinical seizures (non-observable symptoms). It opened the door to a neurologist willing to see us, and to memorably exclaim once the electroencephalogram (“EEG”) spikes revealed the truth, “We usually don’t get to see a kid like this.”

It is exactly because my record-keeping was the key to our daughter’s vastly improved future that I am passionate about tools that assist caregivers in organizing, accessing, and sharing with designated health partners their hard-earned data. We as caregivers are gathering data all the time - be it symptom tracking, appointments, referrals, specialist contact information, medical resources, and insurance coverage. The personal caregiver databases we create highlight our willingness and capability as a potential health partner with our medical team. These same databases help us be more efficient at being the “eyes and ears” of the team as each treatment option is evaluated for efficacy. Our research and observations provide key terms and references at our fingertips to communicate concisely to those beyond our medical teams in our charge’s social and educational circles. Good records help make us the best caregivers we can possibly be.

We are now seizure-free (to the best of our knowledge without constant EEG diagnostic confirmation) and medication-free, but my record keeping continues. Epilepsy is a chronic condition and it continues to require more of me as a caretaker.  We certainly have more peace and less urgency in our lives, but (optional: because children with no typical seizure symptoms are rarely seen, and when they do, have had a treatment delay, we don’t have a sense of how long-term epilepsy data, its risk factors and prognosis after seizure control, applies to us. Sudden death in epilepsy (“SUDEP”) risks, the odds of emerging to other types of epilepsy despite securing absence seizure control before puberty, we just do not know.) We stay vigilant. We sync and record data from her wearable medical tracking device. And, we have the concomitant health issues of anxiety, sensory and sleep that continue. I don’t mind synthesizing this information because it prepares me to have concise information to share and advocate with her education and medical teams.  Besides her symptoms, I journal education and physical accommodations and how effective they are. I track correspondence among other caregivers as my daughter’s world expands to include counselors, principals, a host of middle school teachers and after-school instructors. We reference our treatment timelines, success and failures as we assist others in their search for a definitive diagnosis and successful treatment. And, of course, we record her ever growing strength and capacities which is such a wonderful thing to document and share.

Among our health team, her education team, and the school district nurses that help communicate between the two, my records are the central file. Embarking on this life twelve years ago, I never dreamed I couldn’t just call up the pediatrician and demand all her health records as I could for my other children. I am her record. But my database reflects our trials, therapies and specialists -  those that worked and did not. We own our medical records, but until we make the effort to centralize them and make them accessible in the moment we need them, we don’t truly own them and make them work for us. True tools give us that. I was able to achieve much with what generic tools were out there and am excited to be play a small role in a product that is focused on the specific needs of chronic conditions.

During our undiagnosed time, I was not idle. As the primary caregiver during my husband’s frequent and long travels, I obtained for my daughter therapy for the known symptoms: speech, anxiety, sensory, and occupational. I collected data for potential diagnoses, tests and diagnostics taken along the way. I navigated misdiagnosis upon misdiagnosis and which doors became closed and open to us, recording it all. The physical binder became thick.

As a chemist turned medical librarian, my technical notes and observations were remarkable and appreciated. It gave us credibility and led us to a neurologist specializing in sleep disorders and what provided the justification for costly diagnostics to begin.

However, it was the migration from lugging a 3-inch thick binder to the online accessibility of a database that made a significant difference in the years ahead. The organization and updating of the database kept me focused and channeled energy into something constructive that was in my control. A critical benefit was the more involved my traveling spouse could be because he could follow the progress of our research and doctor consultations in real-time. He felt part of the process, part of the journey. He took a more active interest in our endeavors and I credit the real-time data updates to his being more readily accepting of the surprising diagnosis.  The follow through with the daily anti-epileptic drug treatment is a precise exercise in its timing and dosage and with threat of severe withdrawal symptoms if varied. He was on board from the onset.

During the treatment years my records continued to grow. Dosages had to be fine-tuned. Side effects of medication needed to be observed. Constant evaluation was required to assess efficacy of treatment. Follow-up appointments, diagnostics and blood test results needed to be tracked, reviewed and referenced. And, all along, the concomitant issues of anxiety, sensory, sleep disorder, physical and mental development issues needed to be remarked upon and judged whether they were affected by the treatment and to what extent. Through it all, I happily recorded the successes and joys. Such milestones marked our progress if only in a snapshot of a smiling girl. These visual reminders reminded me to remain hopeful and to highlight her strengths as we advocated for her with her medical and educational teams so she could reach her full potential.

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About Laura:

Laura lives with her traveling husband and four children outside of Portland, OR. She retired early from Hewlett-Packard to care for her young family and to pursue a hard-won diagnosis and course of treatment for her child with subclinical seizures. Already involved with the private, public and homeschooling opportunities in her area, Laura took advantage of a hybrid solution to educate her medically frail child in an efficient, confidence-boosting way amidst her young life of therapies and diagnostic procedures. Laura credits her science education and work experience for preparing her for her role as caretaker and mother.

Now seizure-free and medication-free, her child is thriving and attending school full-time in the local schools. Laura advocates for children in her school district with neurological conditions and related issues such as anxiety, sensory and delayed development needs. She contributes whole-heartedly to the international Facebook forum, “Parents of Children with Absence Seizures”.

Laura holds a B.S degree with a major in chemistry from Purdue University and an M.S. degree in Library and Information Science (MSLIS) from Drexel University with a concentration in the management of digital information and biomedical databases. Her career spans the chemical, pharmaceutical and electronic industries in her roles as an environmental and analytical chemist, research analyst, and corporate sci/tech and medical librarian. She is currently serving her second term as a Trustee on the board of the local municipal library.