Epilepsia Refractaria: Reflexiones y puntos de vista de padres y clínicos
One Rare Mom ofrece la pura verdad sobre los retos a los que se enfrentan las familias que conviven con esta complicada enfermedad.
Por Laura Will, MSN & Rare Mamá de un niño con epilepsia
“You’ll adjust.” Those were the words of comfort the physician on our care team offered to my husband and me in response to our fearful question about what would be like when our child developed seizures that could not be controlled by medicine. But is it true that we adjust? I guess so. In part? Perhaps.
When you speak to other parents and clinicians who are caring for children with seizures that continue despite all efforts, it becomes clear that families do experience a “new normal” in which these seizures become routine. However, these distressing moments, that in many cases can be coupled with infuriating setbacks, are not soothed with experience. Refractory epilepsy is hard to understand fully if you have not lived it firsthand as a patient or caregiver.
Si lo sabe, lo sabe. Conoce la hipervigilancia, las interrupciones del sueño, las miradas de extraños, el impacto en los familiares, las preocupaciones por la ayuda a domicilio y la fortaleza que requiere gestionar todo eso. Entonces, ¿cuáles son los puntos de dolor que sufren habitualmente los cuidadores?
“I’ve had people say things like, like ‘his life is so sad,’ when my child has had a seizure on the playground. But, being out on that playground, it’s actually a good day for him. It’s impossible to explain that to a stranger.”
Sueño irregular o falta total de sueño.
When you have a child who is at risk for seizures, that risk is often highest during the transitions between wake and sleep states. At first, I decided I would just sleep next to my son. But after three years, co-sleeping became unsustainable for us. Nighttime is riddled with fear or alarms, and sometimes both. Parents utilize specialized seizure-sensing cameras (such as a SAMi), mattress pads, and pulse oximeters to monitor their children during nighttime activity. One mom notes, "We have the alarms and the SAMi camera, set for any seizure longer than a minute. Sometimes it’s something that needs attention, sometimes not. Sometimes I can fall back asleep. Sometimes I cannot.” Sleep is critical to our brain’s executive functioning and working memory. It has an impact, she adds, detailing how poor her memory is these days— she writes down everything she has to keep track of at home and work.
Encontrar y retener una buena ayuda
For non-nursing help, families find people who might be a good match through resources like care.com (which has a “Special Needs” section that you can access through a tab on their website) or apex-social.com, where you can look for specialized live-in help. But that care is not without significant financial cost. Many children qualify for home nursing hours which are covered by state funding, but even then, a nurse might flake out. One parent notes that it’s a lot of work to train someone on all the nuances of seizure monitoring, and on what type of seizure might need rescue medication, and even after all of that work and preparation, “ they sometimes just quit and you are left wondering why.”
El impacto emocional en otros miembros de la familia, especialmente los hermanos.
Parents are often able to sense the stress that seizures impose on siblings. Our palliative care physician suggested giving our well-siblings a task to help their seizing sibling, such as retrieving a favorite stuffed animal for the seizing child to cuddle with when the seizure is over. Young kids often are worried that they are somehow the cause of the seizure activity, or might also become sick, so lots of reinforcing that they are safe and that the event is not their fault can be useful. A child life specialist can be a wonderful resource too. They can provide a regular check-in point for the children and are able to work through the turbulence of medical events with age-appropriate play and creativity.
The reality of life with Refractory Epilepsy is complicated
Entonces, ¿alguna vez nos adaptamos realmente a la epilepsia refractaria? Entre los cuidadores de enfermedades raras, oigo muchos comentarios del tipo "sí, y...":
Sí, nos hemos adaptado... y sigue siendo duro.
Sí, ahora su hermano sabe qué hacer cuando tiene un ataque... y eso repercute en su ansiedad.
Sí, me he acostumbrado a las interrupciones del sueño... y dependo completamente de mi calendario y de los recordatorios porque mi memoria no puede seguir el ritmo de la privación colectiva de sueño.
Yes, there is a habituation, a new normal…and there continue to be scary and painful moments. “You get used to your kid having seizures, but it still hurts to watch your child go through it. Some seizures are harder than others to witness,” says one parent I spoke to. ” One mom jokes that she now has become accustomed to waking up her husband to put pants on in the middle of the night because she might have to call 911…again. This is their life right now, and it is undeniably more complicated than a life without refractory seizures.
Sobre Rare Resiliency:
Rare Resiliency es una columna mensual escrita y/o comisariada por Laura Will. Esta columna explora los conceptos y habilidades que desempeñan un papel protector contra el estrés crónico y agudo. Cada artículo desafía y anima al lector a seguir desarrollando esa fuerza interior estabilizadora mientras se enfrenta a la enfermedad y a la incertidumbre, a la pena y a la alegría.
