Eating Difficulties

Eating Difficulties: A Journey with Argonaute Syndrome

Feeding should come naturally, right? Many doctors reassure parents that children won’t let themselves starve – their bodies will demand nourishment. While that might hold true for neurotypical children, it’s not always the case for those with ultra-rare conditions like Argonaute Syndrome. In fact, 30% of children with Ago1 Syndrome and 35% with Ago2 Syndrome require feeding tubes or PEGs because they cannot meet their nutritional needs independently.

Albert’s feeding journey began with challenges. Breastfeeding was difficult despite months of trying, so I exclusively expressed breast milk. When it was time for baby-led weaning, everything initially followed the textbook approach: starting with vegetables, introducing allergenic foods, moving to complex textures, and progressing to self-feeding with fingers and cutlery.

Albert began therapy at 13 months after his autism diagnosis, but eating was never a concern. However, around the time of his Ago1 Syndrome diagnosis at 2.5 years, his eating habits began to change. He became more selective with food and stopped using cutlery. Despite consulting psychologists, gastroenterologists, and allergists, his interest in food continued to wane, and his weight dropped. By the age of four, he weighed only 11.8 kg. After much deliberation with his pediatrician and gastroenterologist, we decided to insert a feeding tube in April 2023.

The feeding tube brought some relief; we could ensure Albert received the right amount of nutrients at the right time. However, this introduced another issue – Albert completely stopped eating on his own. Doctors suggested a PEG insertion, but we wanted to exhaust all other options first. As a last effort, we turned to an experienced team of psychologists who worked intensively with Albert for three weeks. Their individualized feeding program was transformative. From eating nothing independently, Albert progressed to consuming 900 grams daily alongside his tube feeding.

Fast forward a year, and Albert has been tube-free for nine months. He eats enriched baby food jars, and while the amounts are enough for him to gain weight, eating remains a challenge. He doesn’t enjoy it and exhibits protest behaviors like turning away, hiding his head, flapping his hands, or crying. Yet, there’s progress – he’s eating more independently, and we hold onto hope that this trend will continue.

This journey has been a tough lesson: nothing is guaranteed when raising a child with ultra-rare conditions like Argonaute Syndrome. Even basic skills like eating can become monumental challenges, overturning your daily life with stress, time, and financial burdens. However, it has also taught us to seize the day and find joy in the small victories, embracing today rather than being weighed down by future expectations.