For months now, our D is totally refusing any food, hardly drinking enough and spends most of her time in hospital, exclusively fed via NGT. She resists admission to hospital (with police/ambulance sometimes involved).
In hospital she resists force feeding via NGT, refuses medication, or engagement and requires security to restrain her, sometimes needing to strap her to the bed and/or sedating her via IM.
She also spent some time in the hospital psych ward several times, but because she does not eat, was transferred back to the paediatric ward after days of starvation.
She is self harming, in hospital and at home. During her short stays at home, she tried to run away and also attempted suicide.
We had a very good private multidisciplinary team and did it all by the book (“taking control” of the food, Magic Plate etc), which just didn’t work and left us watching her enter a terrible downwards spiral.
We now have a community team (great case worker and psychiatrist) to work support us and work with her while she is out of hospital, but her short stays outside hospital, the unpredictability of the discharge dates, don’t give them much chance to attempt engaging, which she's not keen on anyway.
We suspect that the ED is a symptom of an underlying mental condition and that medication (or maybe CBT) could create the missing compliance with treatment and improve her life. So far we didn't get any traction with doctors (Paediatricians, psychologists/psychiatrists) to get her psychiatrically assessed, despite our insistence and evidences we have of her specific behaviour/patterns growing up.
The rationale is that ED would prevent diagnosis, that her alleged other psych issues are not the priority, that overall her mental health cannot be treated concurrently or before her body/brain is recovered, that a treatment would not be efficient as long as ED was present. With alternating periods of total starvation, obviously, no change is to be expected.
We feel like we are in a dead-end and would like to connect with parents in a similar situation and learn of triggers for change.