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Reflux - When to Test


Pregunta

Our daughter has not had any obvious feeding problems since shortly after her birth. She is currently at approximately the 50th percentile on a typically developing growth chart for height and weight. As a baby, she held herself rigid at times, arching her back. We thought then, it was her way of compensating for low muscle tone. But at the conference, I learned it was a sign of reflux. She does not have any episodes of vomiting, etc. Should testing be done?

Respuesta de nuestros expertos

This is a subject with which many parents struggle. It is estimated that at least 85% of individuals with CdLS experience reflux or related GI issues at some point during their lives. Because this is so, it is encouraged that all individuals with CdLS be evaluated at least once. For those experiencing symptoms or are diagnosed with reflux, evaluations should occur more frequently (even annually for some)

Reflux is an issue common to the general population of infants, not just those with CdLS or other special needs. It is something that many infants outgrow as toddlers and young children. For individuals with CdLS, reflux can subside after early childhood and possibly resurface during their lifetime, making reevaluations necessary. This is also compounded by the fact that not all signs of GI-related problems are obvious. Behavior, posturing (body movements), difficult sleeping, and issues around oral eating (texture, coughing or gagging while eating, lack of desire to eat) can all be symptoms that further evaluation is indicated

It is important to note that there are some individuals with CdLS for whom this is, fortunately, not a problem. However, ruling it out as a possibility, can ensure that issues are not being overlooked and bring peace of mind. It is important to note that many tests are invasive. For more information before making decisions about testing, refer to the GI publications on the Foundation website or contact a Foundation Family Service Coordinator for a hard copy. Family matches are available if you would like to ask another parent who has experience with these issues. A pediatrician may also make a referral to a gastroentorologist for consultation

MW/TK 7-13-10

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Recomendación (es)

Reflujo

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Hay que pensar siempre en la existencia de enfermedad por reflujo gastroesofágico (ERGE) en cualquier paciente con SCdL debido a su gran frecuencia y a la variabilidad en su presentación, incluyendo los cambios de comportamiento.
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La modificación de la nutrición y los inhibidores de la bomba de protones (IBP) son los tratamientos de primera línea del ERGE. Es necesario utilizar los medicamentos antirreflujo a su dosis máxima. Las intervenciones quirúrgicas por ERGE suelen limitarse a casos de pacientes con SCdL cuyo tratamiento nutricional y médico han fracasado, o bien en casos en los que la integridad de las vías respiratorias está en peligro.
R34
Si los síntomas del ERGE persisten, debería considerarse seriamente una endoscopia esofágica mientras el paciente con SCdL siga bajo atención pediátrica.
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La monitorización para el esófago de Barrett debe consensuarse con la familia, considerando los beneficios y riesgos para el paciente con SCdL.

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