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?
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. 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.
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