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La historia de Ismael y la enfermedad de KAWASAKI

Se desconoce la causa de la enfermedad o síndrome de kawasaki, pero presenta síntomas comunes a las enfermedades de la etapa infantil, lo que retrasa su diagnóstico, provocando en muchos casos daños graves al corazón, La enfermedad de Kawasaki es la primera causa de cardiopatía adquirida en niños, a nivel mundial.Pero no sólo afecta al corazón , ya que es una vasculitis sistémica ,afecta a vasos sanguíneos y arterias de pequeño y mediano calibre. Es de vital importancia un diagnóstico precoz, para prevenir graves daños..que  lamentablemente muchos niños no lograr superar.

Mi hijo fue diagnosticado con síndrome de Kawasaki a los 18 meses de edad, ante tantas interrogantes , surgió la idea de crear un blog informativo, pero tardé 19 meses en poder contar su historia … ha sido una experiencia muy liberadora para mí.
Isma tenía 18 meses cuando lo ingresaron el 16 de Enero de 2014, luego de  4 días con fiebre … diagnóstico: kawasaki atípico ,pero creo que todo empezó a finales de diciembre de 2013,  los médicos me dicen que no tiene porque existir relación ya que hubo un período sin fiebre,pero aún así tengo el presentimiento que sí la tiene…
 La última semana de Diciembre Isma , comenzó con moquitos líquidos, tenía picor en uno de sus oídos y fiebre,  estábamos algo acostumbrados  a que estuviera malito ,después que estuviera ingresado por infección urinaria a los dos meses, enfermaba muy seguido , pero ésta vez tenía nuevos síntomas : cólicos y llanto fuerte (Isma era un bebé muy tranquilo que apenas lloraba )  sus ojitos y labios estaban algo rojos y la fiebre había llegado a 39.5 , lo llevamos a su pediatra y tras la exploración nos dijo que tenía placas en la garganta y le recetó antibióticos durante 10 días. Ésta vez notamos que la fiebre tardó en irse, pero al cabo de los 10 días el peque ya estaba mejor.
Pasados 15 días comenzó nuevamente con fiebre , moquitos líquidos , sus ojitos y labios estaban rojos ,estaba muy llorón e irritable, con picor en sus ojos y oídos , y le  caía saliva por la comisura de su boquita, como en el  período de dentición .
 El miércoles 15 de Enero , sus labios y ojos se pusieron de color rojo más vivo , la fiebre había subido a  40.5 lo llevamos  a consulta, su  Pediatra no encontró nada anormal y le prescribió un colirio, pero yo sentía que  en su estado no podía ser una simple conjuntivitis, desde el domingo la fiebre iba en aumento  y no bajaba con antitérmicos y los  bañitos apenas hacían efecto , a la noche volvió a subir a 40 ºc, por lo que regresamos a su pediatra con sus ojitos y labios más rojos. y agrietados, muy decaído e irritable, había algo muy significativo y era que le dolía  todo su cuerpito, se rascaba mucho sus ojos, y cuando lloraba, se le ponían  aún mas rojos.
Su pediatra nos vuelve a decir que no encuentra nada y que  si no hay mejoría al día siguiente  le haría una analítica de orina, para descartar infección urinaria, o si preferíamos llevarlo a urgencias que allí le harían las analíticas más rápido.
Decidimos llevarlo a  urgencias,  una vez allí me preguntaron si el color de sus labios era el habitual, le comenté que no y que me llamaba la atención junto con sus ojitos y la fiebre tan alta, además el estado irritable y el  dolor en su cuerpito, me  explicó  que le harían analíticas de sangre y orina, a las 3 horas lo sondan y ponen una muestra en una tira y  comentan algo de que tiene proteínas. esos comentarios y los  cuchicheos de los médicos en el pasillo, me hacen sospechar  que algo no va bien….
 La pediatra de urgencias me explica que lo ingresarán porque sospechan que es una enfermedad poco común, un virus infeccioso, llamado síndrome de kawasaki, aunque faltan síntomas que lo confirmen,  es importante actuar cuanto antes por el riesgo coronario.
El pediatra de planta, me informa  que quedará en observación , ya que no tiene los 5 puntos para ser kawasaki, los ganglios no se inflamaron, no tenía sarpullido o eczema típico , ni sus manitas ni pies se habían hinchado, según él hay que esperar, pero que seguramente sea un virus.
Le dieron antitérmico vía oral, pero a  la medianoche vuelve a subir, le administran antitérmico intravenoso, lo que hace bajar su fiebre,  el pediatra  me dice que es una buena señal que haya bajado la fiebre así que  puede que  no sea Kawasaki,  al preguntarle por su estado y que ni camina, me dice que  es normal, por el cuadro virósico,  pero él está muy decaído y llorón, me preocupa mucho su estado. a la tarde vuelve a tener fiebre, con lo que saltan mis alarmas nuevamente , para ese entonces había leído en internet sobre la importancia de actuar cuanto antes con la gammaglobulina, por lo que pedí hablar con el Médico. Se presentó la  jefa de enfermeras,  y me dijo que estuviera tranquila que conocía un niño con kawasaki, y que los síntomas eran otros, insistí en hablar con el pediatra, para mi sorpresa vino otro médico de guardia, al transmitirle mis dudas y mi angustia, me comentó que por diferencia de criterios se decidió dejar en observación, aún cuando en en su hoja de ingreso, indicaba ; kawasaki atípico y  que en en este caso ante la duda, habría que haber valorado  los pro y contra de iniciar el tratamiento, con respecto al riesgo de daño coronario, el médico se retiró y a los 15 minutos regresó para informarme que le administrarían la gammaglobulina.
Al otro día bajó la fiebre, de a poco fue mejorando,  seguía con picor en sus ojos, oídos y en la cabeza, se le descamaron sus labios, recuerdo que me angustió muchísimo, el que no caminara, tardó, una semana en volver a hacerlo, parecía que recién comenzaba a dar sus primeros pasos.. por un momento , tuve mucho miedo de que no volviera a caminar.
 La fiebre remitió, mejoró los síntomas, lo que para el médico era muy bueno, ahora quedaba por ver si había afectado su corazoncito, y así fue,,, al hacerle la eco, la cardióloga me informa que tiene dilatación arterial ¡¡¡ fueron tantos sentimientos en ese momento , tuve miedo de preguntar ,pero junte valor y le pregunté  a la doctora si podía pasarle algo sus palabras fueron :
“Mi obligación es decirte que puede haber riesgo de un aneurisma ,  se formen coágulos y sufra un infarto,,,” ahí me desmoroné.
No podía parar de llorar, por momentos recuerdo intentar serenarme, porque estaba con el peque en brazos, pero me fué imposible…
 Recuerdo que fué la peor semana de mi vida, apenas dormía, me sobresaltaba a cada momento , para ver que respiraba, fueron días muy duros…
A la semana siguiente, nos dijeron que la arteria había vuelto a la normalidad¡¡, su colesterol estaba alto, pero entraba dentro de los parámetros en ésta enfermedad, me recomendó dieta sana, baja en grasas, y me informó que generalmente, los niños se recuperan bien de sus secuelas, y hacen vida normal. Esa semana, a Isma le subió la tensión arterial, y otra vez, volvieron los nervios y la incertidumbre, el médico me dijo que no sabía a ciencia cierta el porqué, me comentó que podría estar afectada la arteria renal, y que para comprobarlo, debían hacer una prueba en la que el niño debe seguir indicaciones, y al ser tan pequeño, no podrían hacerlo, en ese momento me enteré que esta enfermedad  afecta otras arterias, no sólo las del corazón. Esa misma semana cogió rotavirus, le administraron antibióticos y suero intravenoso, y por suerte su tensión se normalizó. A los 20 días desde su ingreso, fué dado de alta.
 Posteriormente tomó aspirina durante 6 meses, ya ha sido controlado por el cardiólogo , los que han sido normales, en este momento he pedido consulta con el reumátologo, porque Isma se queja en ocasiones de dolor en la parte trasera de sus rodillas, cuando las flexiona, y como otras tantas cosas , me he enterado por internet, que los niños con kawasaki, pueden desarrollar artritis, por lo que es importante no bajar la guardia, y seguir insistiendo en la importancia de informar¡¡¡
 Esta es la historia de mi peque, la que nos  ha afectado muchísimo a nosotros su familia, pero sobre todo a él, espero que este blog, sirva para dar a conocer esta enfermedad, que hasta el 2014, yo desconocía .
Puedes informarte más en : https://mihijokawasaki.blogspot.com.es
Agradezco de corazón a RARAS PERO NO INVISIBLES  por ayudar a difundir esta enfermedad .
Este artículo ha sido escrito por Marianela Pintos Bideau, como colaboración con Raras pero no invisibles. Puedes informarte más en: https://mihijokawasaki.blogspot.com.es

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