Reflection on Early-Onset Epileptic Encephalopathy: Joseph's Story

This reflection paper analyzes the case of Joseph, a child with early-onset epileptic encephalopathy, as presented in the video "Little Stars - Living with Epilepsy - Joseph's Story." The student reflects on the challenges faced by Joseph and his family, including the initial lack of diagnosis and the subsequent impact on his quality of life. The paper highlights the importance of early diagnosis, palliative care, and special support groups in managing the condition. The student references relevant literature on the condition, discussing the significance of individualized care and the non-treatable nature of the disease. The reflection concludes with a personal approach to encourage parents to acquire knowledge about their children's conditions for better management and improved quality of life. The student emphasizes the role of palliative care in managing the condition and improving patient outcomes.

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Reflection
Student’s Name
University

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Reflection Little Stars - Living with Epilepsy - Joseph's Story
The mother presents the case of his son who was born with early-onset epileptic
encephalopathy but has since managed to accept the condition of the boy and put measures in
place for improving his wellbeing. The mother reports that Joseph was a normal child where she
had a normal pregnancy like any other mother. The epileptic condition started being noticed at
three months when the child had a cold but he would later develop a massive seizure. After being
in and out of the hospital with the parents holding on a lot of hope that the baby will grow
normally. When the disability gradually unfolded he was diagnosed as having early-onset
epileptic encephalopathy with severe seizures (Little Stars, 2015). Although he was extremely
fragile and had regular seizures Joseph’s condition seemed to have become better when the
mother knew how to take care of his condition by joining the special kid's group that supports
children with life-threatening conditions. In this setting, there is palliative care and therapy that
allowed the child to have the best quality of life and even allowed him to understand the world
around him. According to Pavone, et al. (2018) the biggest challenge that such parents face is the
lack of early diagnosis and knowledge of managing children with this condition. Does it mean
that Joseph could have led a better life if the problem was determined early so that he can be put
in palliative care plus therapy.
From the video, it is evident that living with a disabled child is difficult since the parents
have to learn how to manage the condition to assist the baby to have the best quality of life. As
seen in the case of Joseph, the mother was not aware that the baby was epileptic and even though
they were in and out of the hospital the condition was not diagnosed early. This would make the

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mother in and out of the hospital with the seizures that the baby was experiencing increasing.
However, when the problem was discovered, Joseph was joined to the Special kid’s group and
then palliative care and therapy were started to improve his quality of life. From my observation,
the mother seems to have overcome the denial and learned how to manage the condition.
The case of Joseph presents the effects of early-onset epileptic encephalopathy which
can be devastating and contribute to the decline in cerebral function. In previous literature, I
learned that this condition is characterized by refractory seizures, severe electroencephalographic
abnormalities, and developmental delay which have all been reported in the video (Ruiz, et al.,
2019). Joseph had continuous seizures during the first few months making the mother in and out
of the hospital. I think the reason that this was prevalent is because of the inability of the parents
to find alternative ways of supporting the child during the early months (Hwang & Kwo, 2015). I
have noted that palliative care and special support groups came in later when Joseph had
struggled a lot with the problem. I can evidence this from the fact that when palliative care and
therapy came in, the condition of Joseph improved since the mother learned how to improve the
quality of life of the child.
From patient-centered approaches, I learned that there is a need to develop individualized
care based on the needs of the patient. The case of Joseph presents a lack of early diagnosis of
the condition which would lead to the patient being put on palliative care. Kato, et al. (2013)
argue that this condition starts manifesting at the age of three months where the child starts
experiencing seizures. From the case of Joseph’s mother, it is evident that she did not have prior
knowledge of the condition and even how to care for the child in that condition. Nariai,
Duberstein, & Shinna (2018) state that the condition is not treatable, which means that the parent

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and the caregiver need to have palliative knowledge on how to care for the patient to improve the
quality of life. I have noted this in the initial part of the video where the mother was expressing
difficulties in dealing with the child until when they the special kid's group that offers support to
both the family and the patient. This is seen from the fact that Joseph’s parents did not know that
this condition was permanent and kept in hoping that he will improve and live like a normal
child. My approach to this situation in the future is to encourage parents to have adequate
knowledge of the condition of their children so that they can understand how to deal with the
challenges that the problem presents. This will increase early acceptance and at the same time
improve the onset of palliative care which will increase the quality of life of the patient.
In conclusion, early-onset epileptic encephalopathy is a non-treatable condition and can
only be managed through Antiepileptic drugs that are used to reduce the symptoms. This calls for
increased palliative care and knowledge of the condition by the caregiver or the parent to
increase the prognosis of the disease. Since most cases lead to death at infancy, then it means
that palliative care is the best way that can be used to manage the condition and enable the
infants to achieve the quality of life.

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References
Hwang, S.-K., & Kwo, S. (2015). Early-onset epileptic encephalopathies and the diagnostic
approach to underlying causes. Korean Journal of Pediatrics, 58(11), 407–414.
Kato, M., Yamagata, T., Kubota, M., Arai, H., Yamashita, S., Nagakawa, T., & Fujji, T. (2013).
Clinical spectrum of early onset epileptic encephalopathies caused by KCNQ2 mutation.
Epilepsia, 54(7), 1282-1287.
Little Stars (2015). Little Stars - Living with Epilepsy - Joseph's Story [Motion Picture].
Retrieved from https://www.youtube.com/watch?v=LCU0AKzanos&feature=youtu.be
Nariai, H., Duberstein, S., & Shinna, S. (2018). Treatment of Epileptic Encephalopathies:
Current State of the Art. Journal of Neurology, 33(1), 41–54.
Pavone, P., Corsello, G., Ruggieri, M., Marino, S., Marino, S., & Falsaperla, R. (2018). Benign
and severe early-life seizures: a round in the first year of life. Italian Journal of
Pediatrics, 44(54).
Ruiz, M., Sarasa, M., Rodríguez, L., Nieves, M., Estéllez, F., Arce, S., . . . J.Benito-León.
(2019). Guidelines for seizure management in palliative care: proposal for an updated
clinical practice model based on a systematic literature review. Neurología, 34(3), 165-
197.