Swallowing dysphagia as a cause of rejection of solid foods

Interesting updates on our recent Ask B & K case regarding the toddler who refused solids. Ameera, the Egyptian IBCLC who wrote us about this case communicated the surprising news that the mother weaned the baby and the baby immediately began accepting solids. This is a very counter-intuitive result, but in the interest of intellectual honesty, we feel obligated to report the outcome.

We also received a very interesting response from a mother with a similar problem whose baby was eventually diagnosed with swallowing dysphagia. Read her story by scrolling down to the bottom of our response to Ameera. Please send us your thoughts on these cases.

Swallowing dysphagia as a cause of rejection of solid foods

A mother wrote us in response to Meera’s question. Her comments are quite interesting, and Kay and I thought we would share them because they represent another organic reason why a child might reject solids. Shannon’s persistence in seeking a reason for her child’s delayed reaction to a normal developmental milestone shows how difficult it can be to find answers and how often it is necessary to seek second and even third opinions from care providers.

Shannon writes:

I want to share another possible reason why the baby in Egypt will not accept solids. When my son, Finn, was 6 months old, I was concerned that he refused to take any solids. He accepted food, but as soon as it touched the back of his mouth he gagged. Pureed food could be thick or thin, but it always elicited a gag response. We tried several varieties of fruits, vegetables, and cereals with no success. Even juice, water or expressed breast milk fed from a spoon made Finn gag.

Some of my LLL friends told me not to worry, sharing that their babies refused solids until 10 months or 12 months. But what was so overwhelming and concerning to me was that Finn was also unable to take a bottle or cup. He had the same gag reaction to anything in his mouth, so eventually he began refusing the bottle or cup. I recall he was able to take the bottle a few times in his first month, but from 2 to 6 months was unable to. This did not seem normal to me.

His breastfeeding behavior also concerned me. Finn often broke suction once my milk let down. I could hear him breaking suction as well as feel it. Even at 8 months old he would often come off the breast gagging, unable to handle a fast milk flow rate. Finn began sleeping 4-5 hours at a stretch at night around 3 months old, giving me some rest, but when he was 7 months old he went back to nursing every 2-3 hours at night. The pediatrician and I thought this was because he was hungry. We began doing weekly weight checks and he was staying in his curve, I think due to the frequency of his night feeds.

I teach classes in the evening once a week and am away from him for 4 1/2 hours. My husband had to bring the baby to me before class, at the class break, and at the end of class to nurse because his feeding difficulty made it impossible for others to care for Finn.

The pediatrician looked in his mouth and noticed a bifid uvula and suggested we schedule an appointment with a pediatric ENT to rule out a submucous cleft of the palate. It took a month to get the appointment. In the mean time I contacted Early Intervention to see if Finn would qualify for services.

A Speech Therapist came out to perform an evaluation. After screening Finn for delays in all the developmental areas she did not observe enough delays for him to qualify for therapy, even though at 9 months, he could not take a cup or bottle, eat any solid foods, or sleep for more than 3 hours at a time.

The speech therapist told me to just let him “cry it out” at night. She advised also my husband to let Finn cry because at 9 months he should be able to go 4 1/2 hours without eating and that the crying was a behavior issue not a hunger issue. This advice disturbed me because although I know my husband is not at risk for shaking a baby, the statistics show that men who are left with crying babies are the most likely to shake them. Her advice did not seem sound or humane to us.

We finally saw the ENT and he made a diagnosis of dysphasia and he ordered a barium swallow study. Once we got the diagnosis, we became eligible for Early Intervention services in our home. The Occupational Therapist (OT) helped us schedule the swallow study and was there to help us understand the results. We learned that at 10 months old, Finn had the swallowing capability of a 3-month-old. Along with the slight structural abnormality, his main problem was low tone. The OT specialized in a technique called Vital Stimulation Therapy that uses externally applied low-current electric stimulation to the neck and face. She told us that she had seen this help many infants improve their breastfeeding and solid feeding abilities so I was eager to try it. (Their website http://www.vitalstim.com/ describes it as an “FDA approved therapy for dysphagia.”)

The OT attached electrodes to Finn’s neck and put ace bandage around to hold it on. She started out at a low frequency and then after 10 minutes increased. He tried to pull the wires off a few times, but got used to it quickly. He nursed for the first 5 minutes, then the rest of the 30 minutes he sat on my lap and played as she increased the intensity. A few days later, he was able to take a few tiny sips of juice from a small cup for the first time without gagging. A week later he was able to take a few tiny tastes of yogurt off a baby spoon! This was a milestone for Finn, but to me it meant freedom!

Finn only needed 3 more sessions of vital stimulation to achieve swallows from the sippy cup and move onto other foods like french fries. When Finn was 12 months old, the OT decreased the therapy from weekly to twice a month. At 16 months, Finn saw the OT only once a month. At 21 months, we had our final OT session. Finn is now 28 months old and still mostly nurses, only eats a few bites of food when he is around me, but when I am working and away he eats more. At his last appointment he was up to the 47 percentile from 30th just three months before.

I hope sharing my story will help others consider swallowing dysphagia as a possible reason for solid food refusal.


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