The recent tragic death in hospital of a young teen in the northern UK, as well as the death of the French model Isabelle Caro while hospitalized, and the subsequent suicide of Isabelle’s mother over it, has made me wonder about the cause of their deaths.
Re-feeding syndrome is a well known complication of re-feeding starved individuals in many settings. It has been described in the hospital setting during the course of oral, intravenous or purely liquid feeds. It has been reported as a complication following bariatric surgery, as well as a result of starvation re-feeding caused by poverty, neglect or famine. It has also been described as a consequence of re-feeding too aggressively at home.
Re-feeding syndrome can manifest as mental confusion, seizures, muscle weakness, difficulty breathing and cardiac arrest. One of the chief chemical manifestations is hypophosphatemia (low phosphorus), which is caused when the body pumps out insulin in response to food and phosphorus rushes into the interior of cells, where it is no longer available for cellular metabolism throughout the body, especially the heart. It is a particularly ironic and tragic way for a patient with anorexia nervosa to die, because it is caused by the medicine that will also cure: food.
So how much food is too much and how fast is too fast? Why don’t we see this more often? How can we prevent it?
Re-feeding syndrome and hypophosphatemia are rare complications of replacing calories — rare but deadly. To me that means “avoid at all costs, even at the cost of being overly cautious”. These are people’s children we care for at the Kartini Clinic. That means they must be able to trust us. They must trust us and we must be deserving of that trust.
Re-feeding complications occur mostly during the early course of re-nutrition; for that reason at Kartini Clinic we always check a phosphorus level on admission and during the following days in any patient who has been significantly starved or who has lost a lot of weight, regardless of their starting point. If they are ill enough to meet hospitalization criteria – for whatever reason – we check a phosphorus level every six hours during the first 24, then every day after until we are at a fairly steady caloric intake and the blood level of phosphorus has been stable. Those patients not as starved can have their phosphorus levels checked less often.
This need for monitoring has implications for outpatient treatment and for the course of at-home re-feeding, including for our own proposed Kartini Intensive Parent Week. A series of lab tests done at the start of treatment will not catch hypophosphatemia since it won’t begin to happen right away. Phosphorus needs to be followed.
Parents: make sure you ask the medical provider who is supervising your child’s care, at whatever level, to check phosphorus and all electrolytes more than once.
We will likely never know what exactly caused these recent deaths, but we must safeguard our own.