I would love to hear from any other parents struggling/who have struggled with this problem, . There really seems to be a sub-group of us on here at the moment.
I know pretty much ALL kids show an uptick in resistance and freak outs but most people are able to support their kids to eat eventually. I never could, any pressure, no matter how loving, resulted in him eating absolutely nothing, sometimes for days. The usual escalations all the way up to ng tube IP, resulted in him always pulling out the tube asap. The doctors could see no way of treating him IP without sedating him 24/7 and because of his severe under-nutrition this was deemed too risky as well as ultimately unhelpful.
He was so incredible depressed and bleak that he had no life to stop; no joy, no pleasure, no soothing distractions, nothing. We actually realised we had to do the opposite of LSUYE; we had to give him a life worth living.
So 8 months ago (God, has it been that long?), we brought him home. Our initial goal was to stabilise him so we:
- created a safe, warm, dependable environment. We saw this as very important for the whole family. We achieved this mostly through our own emotional behaviour; using warm and affectionate voices, no heated discussions, acting as if nothing happened after meltdowns, treating him as if he had any other illness with unpleasant symptoms
- Brotherly love. I coached the older and younger brothers to interact normally with ED S. I told them strongly that they could best support their brother by playing games, chatting, giving a hug, being normal. I also told them that they were not responsible in any way for ED S eating or health. Of course, they occasionally whispered something they noticed to me but mostly they leave all that stuff to mom and dad. It has been very important to talk to them (usually at bedtime) about stressful events, to warn them in advance of possible freak outs (and plan what they could do, usually iPad with headphones), to reassure them that mom and dad will sort things out (often faking it until we make it!)
- Grandma love. Special relationship with one nana who he writes to. He can tell her anything and she will not tell us unless his life is in danger. She has read up and sometimes asks for general advice about what to say re the illness
- Food; safe foods, safe amounts, dependable timing. This has really reduced the anxiety so that he mostly eats without problems. I, of course, have varied my recipies so that they are much more calorific than previously. He is recently asking for variety, different fruits, milk warm with spices and MASSIVE WIN first favourite chicken soup, now beef noodle soup! There is almost no pressure at mealtimes except for our expectations. Any and all distractions/comforts allowed so iPad, table in living room, no guests, timer 30 mins
- Mom reading tons and passing on info as appropriate. E.g. terror at thoughts of doc visit calmed using techniques learned in ‘Freeing your child from anxiety’: telling little bro that being vegetarian is not safe in our family now we know we have genes and the nutrients are esp important to us, few weeks later ED S left note that he would eat chicken soup; passing on info piecemeal re EDs to reduce strong feeling of guilt/responsibility
- Closing loopholes; searching and finding hidden food, checking for purging, banning all but fun exercise, not discussing food/calories etc
- Activities and occupation. He is a very creative kid with lots of hobbies. At first we gave him an occupational therapy budget and told him that’s what it was. Now, he earns that budget by doing spring cleaning chores. He feels chuffed with that
- No school. Just not happening so who cares? We have bigger thing to worry about.
- Striving for our normal. Keeps the goal in sight.
- Edit: Medical oversight was NOT NEGOTIABLE. But we did look for ways to make it less stressful. Once a week at pediatrician (very stressful) and we bought a blood pressure monitor and measured BP, heart and temperature at home and emailed results to pediatrician. She told us which measurements meant go to hospital NOW and she had the hospital briefed on the situation.
Those are just the highlights. I’ll probably thing of some others but I really curious to hear how other people have done and to learn some more tips and tricks.
With warm appreciation, as always,
2015 12yo son restricting but no body image issues, no fat phobia; lost weight IP! Oct 2015 home, stable but no progress. Medical hosp to kick start recovery Feb 2016. Slowly and cautiously gaining weight at home and seeing signs of our real kid.
May 2017 Hovering around WR. Mood great, mostly. Building up hour by hour at school after 18 months at home. Summer 2017 Happy, first trip away in years, food variety, begin socialising. Sept 2017, back to school FT first time in 2 years. 2018 growing so fast hard to keep pace with weight
- Swedish proverb: Love me when I least deserve it because that's when I need it most.
- We are what we repeatedly do. Excellence Recovery, then, is not an act but a habit. Aristotle.
- If the plan doesn't work, change the plan but never the goal.
- We cannot control the wind but we can direct the sail.