Thinking back, it seems like we went straight from the ENT to the barium swallow, or videofluoroscopy (how did Dennis and I ever get any work done?) For this test foods of different consistency are mixed with barium sulphate which shows up on an x-ray as the child eats. The purpose is to see if all the food is making its way to the stomach when swallowed. If the act of swallowing isn’t strong enough to clear the “food pipe”, the food or liquid could enter the airway, causing a cough or aspiration. Ben was given foods with three different consistencies; pureed, thin liquid and lumpy. All three consistencies showed very different results. With pureed food the esophagus was slow to clear the food but it did happen in what was considered a normal fashion. The thin liquid, which Ben took from a bottle, was swallowed less efficiently. Ben actually let it roll down the back of his tough before swallowing increasing the risk of choking. The semi-solid food caused the biggest problem for Ben. It took several “tongue pumps”, and hyperextension of the neck to completely clear the food from the esophagus. The conclusions were that reflux could be contributing to Ben’s habit of throwing his head back; and his delayed oral motor skills made it difficult for him to handle even semi-solid foods. The recommendation was that we train Ben to drink from a special cup instead of a bottle. This would help him to practice his swallowing technique while building the muscles that are needed to handle solid foods. For now, we needed to keep Ben on a pureed food diet, which made it harder to get him to gain much needed weight. With the help of the staff dietitians at Children’s Hospital, we discovered liquid supplements which have been very helpful over the years in giving Ben added nutrition. The restricted gait caused by the cerebral palsy puts an awful strain on Ben’s stamina. The supplements have helped to bulk him up.
Next up, our last test for the time being, but the beginning of our frustrations with the “professionals”….
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