F.E.A.S.T's Around The Dinner Table forum

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So frustrating, exhausting, sad...my son remains in hospital with calories +6000. 3 meals, 3 snacks...and 3 hours away from home. My husband is there supporting him over the next 3 days. My son's day is spent worrying about the next meal or negotiating the current meal. Today he refused the snack given (had to have 2 ensure) and he vomit his supper...now has to have ensure replacements x 3. Does this work?? when do you see the change? My son is convinced that this method is not working...does it ever not work?

Hi cwebster, 
I am so sorry he is so far from home. What you describe is very normal. The ED makes them worry about food all the time- obsessive scary, thoughts, about food.  As for him "buying in" about the treatment it won't happen. He does not need to believe it for it to work. None of them,have ever said, that I have seen on the forum, "oh yes this will work. I will do everything" the push back is part of this too.
The point is, however, is that he eats to gain weight. The food is the medicine. There are many ways to "get there", some needed NG (nasogastric feedings), then the child was exposed to oral foods and then that escalated to full meals

In another thread you note the exercise compulsion and that he has had a couple of admissions as well as this recent one. With weight going up, and establishing a good food routine, the brain gets better, but it takes months after WR and maybe more weight than the professionals ever thought too. 

Are there distractions available to him at the hospital? Ie games, school, (My D did "hospital" school for 3.5 weeks), books etc. Can he have visitors to distract him, like friends, family? Is the hospital a specialist ED unit? You did mention previously he was at a tertiary care centre, so presuming it is an ED unit. 

I know it is hard, and harder when you can't be near him. I do hope they get the weight on him quickly. Is there something you can do for yourself while he is in hospital? Some have made many casseroles (high calories) and put them in the freezer for when he gets home. But also, and very important, can you do something good for you? 
All the best,

When within yourself you find the road, the right road will open.  (Dejan Stojanovic)

Food+more food+time+love+good professional help+ATDT+no exercise+ state not just weight+/- the "right" medicine= healing---> recovery(--->life without ED)
Thanks for your reply. Yes he is in a tertiary ED unit, has been there since Dec 16/18 (had been there in nov 2018 and discharged home but started refusing again). He is getting school at the unit and we have provided him with activities such as puzzles, cards, games, ...etc. Low energy activities. Ng tubes have happened in the past but he has been resisting and been able to complete ensure by mouth. Some days it doesn't seem like there is an end in sight! Why him? Such a puzzling disease...I am remaining hopeful that food is his only medicine. The behaviors appear like they are getting worse not better with weight gain--the disease fighting back?
I am taking this weekend off...my respite. Need to stay involved in other 2 kids activities too. Trying out new recipes that are calorie dense (bringing snacks and some meals to unit as more calorie dense).
Thanks for the support.
When your son says things are not working that is to be expected. My D was convinced for a number of years that it was impossible for her to get better, and she thought we should give up on her. She is now enjoying life as she should. This negative thinking pattern is very normal and typical of ED. Perhaps acknowledge his fear that he won't get better, let him know that you have great faith that he will get better. They mostly do, and we do need to keep that faith. 
D diagnosed restrictive AN June 2010 age 13. Mostly recovered 10 years later.  Treatment: multiple hospitalisations and individual and family therapy.
scaredmom wrote:
He does not need to believe it for it to work. 

That is such an important point.  He does not need to believe it - he does not need to want it - he does not need to want to get better.

My d did not believe she could or would get better, and she didn't even want to get better.  That's okay - we dragged her back to health anyway.  That's very common.

I know it is godawful hard for you and your son and the whole family to have him in treatment so far away.  My heart aches  for you.  But in the future you will look back with gratitude that he received this lifesaving care.  Not everyone has an option where the professionals are competent enough to make sure they consume all the calories they need so it is a true blessing that that is happening.  (Doesn't make it any easier to bear in the moment - I know.)

Hang in there.  We're with you in spirit. xx

"We are angels of hope, of healing, and of light. Darkness flees from us." -YP 
cwebster wrote:
My son's day is spent worrying about the next meal or negotiating the current meal. Today he refused the snack given (had to have 2 ensure) and he vomit his supper...now has to have ensure replacements x 3.

To be honest, that is normal. My d talked about nothing else then the next meal and the last meal and how she hates it and how she hates us for that and and and. I spend hours on phone talking her through these thoughts at the days we were not allowed to visit her.
It gets worse first with weight gain but then it gets better. It is the disease fighting what you see and that is good. If you would see no resistance I would be worried. We say here if you see the flak you are over the target. So to see so much ED is in fact a good sign (although it does not feel so).

cwebster wrote:
Does this work?? when do you see the change? My son is convinced that this method is not working...does it ever not work?

It works. Food is medicine and by adding weight and full nurishment his brain will be nurished again and when he is weight restorated (at a good weight for HIS body) his brain will start to rewire all these damaged connections and he will get better. Not tomorrow and not next week but time and food will heal it. You will see the change at time x after WR (weight restoration). In our case it was about 4 months after that when we noticed little tiny baby steps of recovery. You do not see them first when they happen and so I started to mark my calendar with colours. Red for bad days, yellow for "normal ED" days and green for good days. In the first weeks there were more red days and some few yellow ones. Then more yellow and only a few red. Then the first green day. It gets better.

Your son does not need to be convinced that it works. In fact it is ED that is telling him that this will not work. My d also thought that it will not work and she could not believe that it is "all about food". Looking back she knows now that we were right and that it is all about food. Even today she will get a melt down or shut down if she skips a meal or has gaps between meals for more than 5 hours. Blood sugar level still needs to be constant.

Try to compare it with cancer. If your son had cancer and needs to take chemotherapy you would not expect him to be convinced that the meds work. You would sit besides his bed and tell him "I will not leave until you have taken those meds. I love you and I will not accept that you die." Same here with food.
Keep feeding. There is light at the end of the tunnel.