Mi hijo Emir cumplirá nueve años en un par de meses. Siempre ha sido un buen hijo. Empático, sensible y muy cariñoso. Tan buen hijo ha sido que es uno de esos niños que nunca da problemas a la hora de ir al doctor, y todas las veces que ha sido hospitalizado siempre ha recibido felicitaciones y halagos por parte de las enfermeras y el personal involucrado.
Siempre digo que puedo aguantar “10 Emir enfermos” y no puedo con “1 sóla Ayelén”, y es que Ayelén es el caso opuesto. Llora hasta cuando se imagina que las cosas le duelen.
Desde que era muy chiquito Emir demostró que tiene un alto umbral al dolor. Fue un niño enfermizo y nunca lloró ni siquiera cuando le sacaban sangre ni le ponían una inyección. Ha sido con el paso de los años que copiando el comportamiento de su hermana Ayelén, ha aprendido a ponerse nervioso o a asociar cierto tipo de procedimientos con malestar, pero aún así cuando estamos los dos sólos todo pasa sin problema alguno.
Le miden la tiroides cada 3 meses o a veces de modo más frecuente cuando se detectan cambios. Ir a la clínica de análisis no es nada fuera de serie para él y siempre me pide un galleta o una botellita de jugo de naranja para dejarse pinchar. Ni siquiera hace caras cuando entra la aguja e inmediatamente después que le vendan el antebrazo me recuerda el premio.
Lo típico es que la familia diga “que valiente” “que macho”, o que yo piense que él reacciona a mis súplicas y a mi desesperación y hace su mejor esfuerzo por aparentar, pero la verdad es que los niños y las personas con síndrome de Down pueden tener un alto umbral al dolor por varias razones. Puedes leer un análisis ciéntifico de su comportamiento cerebral en el siguiente enlace de Down 21.
Por supuesto que hay respuestas ciéntificas para este comportamiento, pero a la hora de vivirlo en carne propia no se si será positivo o negativo, ya que ante la falta de expresión de dolor, a veces se hace muy difícil saber cuando algo anda mal.
Emir siempre ha sido delicado de los pulmones, nunca se queja hasta que las señales son demasiado obvias para evadirlas. Respira con problemas, se pone ansioso o sencillamente tiene mucha tos. A veces pide una aspirina porque le duele la cabeza, aunque creo que es en realidad porque le gustan las aspirinas de naranja, pero sin duda he aprendido que en su caso no debo esperar y debo siempre llevarlo al doctor ante cualquier sospecha.
Dos oportunidades han marcado mi memoria. Una fue a los 8 meses cuando lo llevé al doctor porque a pesar que él no se quejaba yo sentía que algo no estaba bien. El doctor tampoco entendía porque su pulso estaba lento hasta que después de unos exámenes de sangre identificó que sus glóbulos rojos estaban por el suelo. Inmediatamente le hicieron transfuciones de sangre y comenzó un agresivo tratamiento. Aún así en ningún momento se quejó, lloró o paró de comer.
Lo miso me sucedió un par de años atrás cuando lo llevé al doctor y su oxígeno estaba increíblemente bajo. Nadie entendía como caminaba, reía y jugaba, pero tuvieron que internarlo inmediatamente.
Ahora se encuentra saliendo de un cuadro respiratorio delicado después de tres semanas en las que su pulmón izquierdo estaba muy delicado. También estuvo hospitalizado e igual que siempre, la visita al hospital fue una oportunidad para él de sacarle provecho al room service y mirar caricaturas el día entero.
Si has detectado que tu hijo también tiene un alto umbral al dolor o es inmune al dolor en ciertos aspectos.
– Conversa con el pediatra de tu hijo para fijar citar frecuentes de revisión general. No dejes de llevarlo a sus citas regulares porque aparentemente todo está bien.
– Mantente atenta a los cambios de conducta. A veces no se quejan pero se ponen contestones o se alteran. Ellos pueden no sentir dolor pero su organismo siente los cambios y reacciona de un modo diferente
– Facilita la comunicación mediante el uso de tarjetas. “Dónde te duele? Aquí, acá” Los hermanos, los amigos y los familiares son también buenos modelos para enseñarle a expresar al dolor. Ellos copian mucho y entienden el concepto cuando lo ven en los otros. Emir ha aprendido a hablar de las cosas que le duelen copiando a Ayelén; que se queja de hasta lo que no le duele.
– Es cierto también que la falta de comunicación fluída no ayuda a la hora de comunicar el malestar, así que no te olvides de hablar mucho con tu hijo y recordarle lo importante de compartir. Motívalo a encontrar maneras de expresarse.
Literalmente le puedes estar salvando la vida.
Fuente: elianatardio.com
Por: Eliana Tardio, madre de dos hijos con síndrome de Down
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