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

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KP
Hello everyone 
My 13 year old daughter has been in the local hospital being re-fed since being admitted due to reduced heart rate, bp etc (previously posted with title undiagnosed and needing advice). 
She seems to be finding eating at the hospital okay, although obviously hates the quantities she is being given. 
We have now had 2 meals at home. The second one today was difficult as I think the portion was a bit too big, but she did manage it. Since, she has been constantly going on about how this is all my fault and it’s my fault if she gets fat and she is fine. She is due to be discharged home with ongoing community ED team support on Tuesday. I am so nervous! 

My questions:
Did you tell your kids the meal plan or keep it from them? 
Did you let them have any say in options on the meal plan? How did you decide how much they should be eating? 
Do you let them know their weight? She is convinced that she has put loads of weight on (she hasn’t), but the hospital are not telling her what she weighs. I can understand why, but in her mind, she has put on loads of weight, which is making her very anxious. 

Any help / tips gratefully received. 
Thanks :-)
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Enn
Hi KP, 
Some found that having a meal plan made up in advance was helpful to alleviate the anxiety. I did not, unless it was a fear food. Then we found giving her a few days to think  about it  and that was a bit easier that springing it on her. Options? no not really. But a few times when she freaked out over a meal I gave her choice of another food similar in calories and she chose. The act of choosing however, was so hard for my d, I learned early after IP discharge she could not choose. It was agonizing for her. She kept going back and forth "this one, no that one" she could not make the right choice that ED was telling her in her head. So I took away choices early. Over time, equivalent snacks were offered as choice, Do you want cookies or the granola bar? 
Some have found blind weights helpful, (we do both now but started with blind) and some have found that the anxiety, as you are describing, was alleviated a bit when they saw that they had not ballooned up by 100's of pounds. I say go with your gut and see what happens if she knows. You can always go back to blind if it makes it worse. Remembering that if you make a certain decision today it does not have to be made in stone. You are allowed to alter your course as you see the need and results. Knowing that for me, was so useful. I tend to feel once I make a decision I have to follow through to the bitter end. I now am more level about it and say we can try this and see and then that and see.

As for deciding how much to give: I asked the IP dietitian what her calorie intake was at discharge and added about 500 cal/day or  more every week or so. She was discharged at 2500 cal and I did that for one week or so and then increased to 3000 and found at 4000+ per day she gained well. If she ate it IP, she ate it at home and then I varied it over time. 
Oh about the being your fault and getting fat etc.. That is ED talk. It is awful, awful, awful to hear and absorb. It is her way of assuaging her guilt and self loathing. If it is  your fault she has to eat, then she can tell ED, "see mom made me do it. I had to eat it!" so it was not her fault. I hope that makes sense.

There is no right/proper easy way, it takes time and effort and true academic study of your child's ED to figure it out. I found that I tried something one day and it may not have worked that day. But then in a week or so, I tried it again and it did work. It is not linear. It really is not "do this and that will happen" . At 2.5 year in I learn something new about my own D's ED weekly, it seems.  When I first started I really wanted the perfect formula for success. I found it helpful to try what others did and modify for my own kid's ED. 
I think I was rambling a bit there and hope there is something that clicks for you.
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)
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Enn

Another few points:

1: Keep the routine the same as at hospital. The waking up and eating times etc.. will be helpful to set up a routine
2: Keep the house safe from anything that can be used/ingested that would be harmful
3: Have plans if she does not eat in a certain amount of time or does not eat what she needs to.When do you go to the hospital (things like that)
4: cook, cook cook and freeze what you can. It may make it easier for you when she gets home
5: Make a list of what can distract her when she is struggling. Videos, games, movies, music, puzzles  etc...
6: Trying to find some non food activities for the family to do to keep the relationship as happy as you can during the stressful time
7: Have a plan for time out from ED for you if it gets overwhelming. When D first came home, I cooked and thought I had to do it all alone. I realized that h could distract her better than I could and play with her and sit and watch Netflix with her. She was full of rage for me. Those were difficult days, but we get through the best we can. 
8: I do not know if you are working and I would suggest ensuring that if you are you may need to take time off to feed and just have few days to rest for yourself.If I were to go back to those days, I would take more time off than I did. 
9: How about ideas for going to school? Will it motivate her to eat? does she need supervision at school by you or a staff member that understands 
10: School work and provisions around gym and recess and health classes. We put a Hold on gym and health until she was better then re-introduced physical activity slowly with refuelling as needed. 



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)
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melstevUK
Hi KP,

Whatever happens to do not allow the clinicians to speak to your d as if she is to be in charge of her meal plan when she leaves hospital.  Ensure that her discharge is managed in such a way that your d gets the very clear message that she has to cooperate and comply with you in the same way as she has had to do when she has been in hospital.

Transitions are notoriously difficult and many facilities do not understand that they are setting families up to fail by talking to the patient as if they will need to be in charge of their own recovery when they leave hospital.  It is worth talking to the lead clinician about this to ensure that everything passes smoothly.
I would also ask if they can let you have a couple of days back up so that you can whip her back to hospital if there is any indication of total rebellion - some anxiety is to be expected but you need to stay calm and reassure her that you is going to be fine and that you know what she needs.  But total refusal because she believes she can get away with it need to be nipped in the bud.  Your d's bed may be urgently needed but you need to know you have the backup if there are any difficulties.

So in answer to your questions - I would not be sharing the meal plan with your d.   Scaredmom gives good advice and covers most of your questions.  At this stage in the game you may be better not sharing her weight with her.  The hospital have got her into the habit of blind weighing and I would be tempted to keep that for a while.

She is going to be hugely anxious on so many levels - Peregrine has just posted an article about managing a child with BPD.  Your d does not have BPD but it is helpful in giving strategies for dealing with difficult and emotional situations of which there will be plenty for quite a while to come.  Having the tools to deal with this will give you confidence.  There is nothing like the behaviours which an ed child presents for making your confidence sap away.

Good luck and I hope the discharge goes well.
Believe you can and you're halfway there.
Theodore Roosevelt.
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BebraveMummy
Hi. 
Our 11 year old was discharged from hospital in March following 9 weeks stay, almost no meals but drank suppliments. 
We kept meal plan from her on hospitals advice and tried to keep routine as close as possible to hospital routine with no opportunity for her input on meals as it was pointless. She was offered food with time limit to eat, if not all eaten had to have full requirement of fortisip supplement. If couldn't we were to go to hospital immediately for ng tube then return home. This rigid plan worked very well as she knew that no matter what the nutrition would go in and we had confidence in what to do next. We didn't ever get to hospital again but many times the babysitters were called and the car engine running when she finally drank her suppliment.
Our d always saw weight and initially extremely distressing.  I wished for blind wt but she has been allowed to know wt in hospital and refused blinds. Hospital stupidity let her know their goal wt for her be discharged and when she passed it she became very angry and defiant that any greater wt too much so I advise not letting your d know any goal numbers as her wt will continue to increase as she grow.. I honestly dont think your daughters anxiety is likely to be less if she knows the number but you will have better instinct for her. 
Wishing you all the luck in the world. You can do it!!
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Mamaroo

KP wrote:
Did you tell your kids the meal plan or keep it from them? 

Yes we placed a weekly meal plan on the fridge, it helped alleviate my d's anxiety.

KP wrote:
Did you let them have any say in options on the meal plan? How did you decide how much they should be eating?
 
Not iniltially, because their input was never "I like a double cheese burger or a chocolate filled croissant". I repeated the same meals on the same day, for example lamb on Monday, fish and chips on Tuesday etc. Only later on did I start to vary the meals. At the beginning I weight her food and calcuated the amount of calories in each dish, but as weighing and counting are ED behaviours our dietician suggested that I just guess. S I gave her the same as my hubby and if got seconds I gave her a larger snack after dinner. I was never good at counting calories, so I would suggest to give her a larger portion than her siblings and then add more calories during snack time.    

KP wrote:
Do you let them know their weight? She is convinced that she has put loads of weight on (she hasn’t), but the hospital are not telling her what she weighs. I can understand why, but in her mind, she has put on loads of weight, which is making her very anxious. 

No, the hospital blind weighed her and I would call the next day to find out if she had gained or not, otherwise she would pester me. I know not knowing makes them anxious, but know their weight is not going to make a difference. My d used to ask what she needed to gain to stop refeeding, and I told her enough so that she doesn't care what she weighed anymore. 

Good luck with the discharge from IP and come back and ask more questions!

D became obsessed with exercise at age 9 and started eating 'healthy' at age 9.5. Restricting couple of months later. IP for 2 weeks at age 10. Slowly refed for months on Ensures alone, followed by swap over with food at a snails pace. WR after a year at age 11 in March 2017. View my recipes on my YouTube channel: https://www.youtube.com/channel/UCKLW6A6sDO3ZDq8npNm8_ww
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Foodsupport_AUS
Great that your D is much more stable. It is definitely a tricky time being discharged from hospital. As you will have already read by the differing opinions there is no one or right way to do this. One thing I do think it is important to understand is that allaying your D's anxiety is not something that should be high on the list. Unfortunately this illness comes with very high anxiety, it is one of the hallmarks of the illness. How that is expressed is very variable. It is important that we don't appease the anxiety and let it get in the way of what needs to happen. So what needs to happen is regular meals with enough food for regular weight gain. For some kids having a clear meal plan really helps them get through it, for some having some say as to whether there is one flavor or another can be helpful, yet for others no input whatsoever is best. That can include no anticipation, or idea of what meal is to come. Since she is eating OK in hospital does she have any say in the meals there? If so you may like to keep that going. My own D used to be so anxious when she knew what was coming it was worse. The same goes for weight - she may be anxious about weight gain but there are many threads on here about blind weight and open weighing. The open weight pro is that long term the idea is that weight becomes unimportant. The con is that for some kids they just can't continue to eat when they know. 

The best advice I ever got was to have a plan A,B and C. If one thing is not working change it up but don't get distracted from the goal. 

Wishing you all the best. 
D diagnosed restrictive AN June 2010 age 13.5. Weight restored July 2012. Relapse and now clawing our way back. Treatment: multiple hospitalisations and individual and family therapy.
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KP
Thank you all for your advice. Sounds like we need to find our way and be flexible with which approach is best. She is in the average range for weight, so doesn’t need to put any weight on, just maintain and actually eat. The danger for her was the rate of loss and malnutrition, not her weight. 
I think I will try letting her know the daily plan, not the whole week. This seems to have worked in hospital. I think for now, seeing the whole week was a bit overwhelming. 
Lots of really helpful suggestions and guidance about what worked for you guys, thank you. 
Distraction post eating is definitely needed, so have ordered some paint by numbers for us to all do together and we have taken to watching tv whilst eating (previously completely not allowed) as this seems to help. 
Thanks again. So good to have your experienced and wise words 
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sk8r31
Wishing you all the best with this transition.  As Food Support says, best to have a Plan A, B, & C and to be flexible with whatever approach you decide to take.  Try what you think will work best with your d, as you know her best, but be willing to change things up as necessary.  'Feedback not failure' is one of the forum mantras.
I will also say that though your d may fall within a 'normal range' for her weight/height that she will continue to need to gain some weight through to her mid-20's. 

I also had a d who was never underweight by 'typical' standards but was hospitalized for medical stabilization due to the rapidity of weight loss.  She did need to move upwards of a 50% height/weight until she was nutritionally rehabilitated to what was right for HER BODY.  We are not all meant to be 'in the middle'.  She is healthy & happy now & looks fantastic.  But she was not healthy at all 'in the middle'.

Sending you warm support during this upcoming transition.  
It is good to not only hope to be successful, but to expect it and accept it--Maya Angelou
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Becs
Hey @KP I hope things go as smoothly as possible for you. We have just transitioned home too, but were fortunate enough to do it very gradually over the last 2 months so we could trial the meal plans and approaches with the support of the IP unit. So these are very personal responses to your questions based on our experience - I think you've got great advice already above

Did you tell your kids the meal plan or keep it from them? 
I was able to create a meal plan in conjunction with the IP Dietician. I gave her a list of all my D's usual foods and she put them into a meal plan with several options for each snack and meal. My D knows what is in the meal plan 

Did you let them have any say in options on the meal plan? How did you decide how much they should be eating? 
D went through the meal plan with the dietician and me and highlighted one or two items she might struggle with. They will be reintroduced in a few weeks. The dietician calculated amounts for me and I still weigh some foods. My goal is to stop weighing in the near future. We are eating out a good bit too in order for portions to be more varied. It seems as though my D trusts chefs more than me at the moment! Sometimes she asks me if I have weighed something, I calmly reply that its the right amount, and then she eats but its a sign to me that ED is still lurking. I sometimes allow her to choose which meal or snack she wants, but not always. All the options are very similar calorie-wise so when she chooses, its for taste preference rather than trying to seek the lowest calorie option. She doesn't find choosing difficult at all. Once she is fully WR, we will work with an outpatient dietician to very gradually decrease the plan. Her mental state is very good, otherwise we wouldn't be doing this.

Do you let them know their weight? She is convinced that she has put loads of weight on (she hasn’t), but the hospital are not telling her what she weighs. I can understand why, but in her mind, she has put on loads of weight, which is making her very anxious. 
Ah this is a tricky one for me! In the early days, when she was very sick, we both looked at the scales with the GP. The GP would give her a lecture about eating. I would cry. I thought that knowing how low her weight was might spur her into eating. It didn't. These days, she doesn't really ask. For me, it feels like the number on the scales is not as important for either of us anymore. Its about her state. She was weighed at the GP last week as she had a bone scan. Too late, the nurse told her to look at the wall, but I know she saw it. We haven't actually discussed it since. I would maintain the same protocol as your hospital for the time being.

Best of luck to you - I really hope this goes well for you and your family x
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