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

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Mumoffantasticboy
just trying to think ahead to when our son leaves outpatient support.  He will have been in for 12 weeks, following a pretty strict regime, including eating tasks for the family and will be close to weight restored.  Would be really interested to hear your experiences of this?  Anytop tips beyond being super vigilant?  Thank you.
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mimi321
Hello and welcome to the forum, Mumoffantasticboy. It sounds like your boy has come a long way, that is great! I'm sure there will be others with some great advice for you here soon with similar experiences. 

I recall a similar discussion before and one suggestion was to remove mirrors if you think that may be an issue (body checking). Setting up home and structuring your day modelled after how it was done in the inpatient setting. Cooking some meals to freeze ahead of time to make things a little easier once he gets home and you settle into a routine. Maybe think of some distractions during meals. Giving yourself some time to settle into a routine at home before re-introducing school. Also to keep in mind that the period close to weight restoration there can be an increase in stress, but this is normal and to do your best to push ahead (ie outbursts, anger). Once that passes, things usually improve. 

It sounds like he was in a good program and made good progress there. Maybe ask them for what the protocol should be if something unexpected comes up. This may not be an issue, but it is good to always know what the options are in event of x, y or z. 
Promise me you'll always remember: You're braver than you believe, and stronger than you seem, and smarter than you think. - A. A. Milne
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scaredmom

Hi mumoffantasticboy,

I welcome you too to the forum. I hope you get the support and information you need. I am sorry about the circumstances that have led you here. This is a kind and supportive space. There is such a wealth of information and real life experience to learn from. 
So the title of your thread is leaving inpatients and then you mention leaving outpatient support? Just so I am clear, is he leaving an inpatient setting after three months? (IP)

My D was IP too for about one month. I learned what the nurses did and tried to mimic that at home. You mention that the family had eating tasks, could you expand on that? Did you do meal support with him? That is what we had to do with our D prior to discharge. It was helpful.

I found keeping the routine the same as the hospital was good for me. It  helped me get the food in and my D relied on that schedule. 

I am not sure if there were self harm issues for your son, but one thing I think would be helpful is to keep the house safe before he gets home. Hide sharps and meds and poisons, just in case. When they come home, it can be stressful. My D thought it would be like "before" hospitalization and that she could go back to her old routines. NOPE. So that was hard for all of us. 
I agree with mimi321, cook now and put in the freezer and it will ready to go. It does help.

Have plans in place prior to bringing him home that have been discussed with the team. What to do if he does not eat and for how long etc, when to go to ER. I found having a note from our team explaining the diagnosis was good to have. We did not need it but in case I had to take her to the ER, I had it for the doctors there and who her specialist was. That way they could take her issues seriously. 

A couple of questions for you:

1) How old is he?
2) Is the diagnosis AN (anorexia)?
3) Where are you located?

Also remember to take time for you too. You need to be healthy and strong for this. Self care is so important and sometimes we forget about ourselves. 
Please ask all the questions you have. We all wish to help. 

XXX

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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Mamaroo
Hi and welcome from me as well. I can just add to keep to a regular meal and snack schedule for the foreseeable future (until brain healing has taken place - 6-12 months after WR). It is a pain at first and needs a lot of planning when going out, but it is not forever and then you can move to more spontaneous eating. Also I would not let him choose his snacks at the moment (just give him a choice between the snacks YOU have chosen). Prepare and plate meals as what would've happened at IP. You need to do this until eating at home has become second nature for him, again between 6-12 months. Good luck!
D became obsessed with exercise at age 9. 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. She is back to her old happy self and can eat anything put in front of her.
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Mumoffantasticboy
Thank you all so much.  So great to have found this forum.   Our S was down to 79% weight to height when admitted. He’s now up to 86% and putting on just under a kilo a week inpatient.  We are in the UK and he is in a specialist eating disorder unit, via CAMHS.  They follow a 12 week minimum programme with tasks every week, after the initial settling.  So far we have eaten a meal together under their supervision, eaten a meal with us in charge ( still under their supervision) and taken him out for a packed lunch.  We have another packed lunch and x2 weekends of restaurant lunches eaten under our supervision to go before moving onto short weekends at home and then long weekends at home, pending how each of the tasks go.
He’s just had his 14th birthday, is tiny for his age in terms of everything but super clever! ( and perfectionist, gripped with anxiety etc....all the risk factors that we didn’t know about!  I also suspect some ASD which is being investigated but I suspect will be mild)
Before admittance he had no cognition of the illness - thought we were all mad!  The disease had a terrible grip on him and although we were getting food into him everyday, his mental health was slipping away and he was at great risk of suicide.  
He is very, very unhappy to be in the hospital, but we now see our old son back 95% of the time on visits and phone calls.  He still has periods of great anxiety and has just started to talk to me and the nurses about the ‘voices’ and confide in me that he looked at a photo and thought he looked fat.  Before admittance he would do this but this time, he seemed to listen when I said it was anorexia tricking him.  He asked for my help, squeezing my hand, until the feeling had passed.  He also shared his worry about eating a slightly bigger piece of chocolate than the others at the hospital 2 days before and how this has been a worry for him since.  So, although all this is grim to hear, to me it sounds like progress.
We don’t have a discharge date yet but, if the eating tasks go well, he could be coming on Friday to Sunday visits home in the next month.
The hospital have been great and we’ve seen such progress but I keep reminding myself ( and my husband/son) that he won’t be ‘better’ when he comes out.  Our anorexic son himself also keeps saying that the hospital won’t make him ‘better’ but then says that his physical health will be better - he thinks his mental health is worse but doesn’t seem to remember how he was before he was admitted.
I’m sure the hospital and CAMHS will guide us during the home visits.  Would be great to hear the experiences of anyone who has taken a similar process, any learnings we can use and ( particularly as I feel really sad today) any that have had ongoing success after this length of inpatient treatment.
the thoughts posted so far have been really useful.  Thank you all.  Xx
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tina72
Take as much rules from IP to your home and run your home like an IP ward for the next time.
Put away all full length mirrors, lock doors and windows so he cannot run away. Lock car doors while driving. Take away everything he can use to hurt himself or you.
Take the IP meal plans and serve same meals at same time at home. Make clear that not eating has same consequences as in IP. All meals and snacks supervised, no bathroom privacy after meals etc.
Wait before you start school again and do it gradually. You cannot do things too late, just too early.

And come here to ask and to vent, we have all been in your shoes and we are here to help you. You are not alone!
Keep feeding. There is light at the end of the tunnel.
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scaredmom
So far we have eaten a meal together under their supervision, eaten a meal with us in charge ( still under their supervision) and taken him out for a packed lunch.  We have another packed lunch and x2 weekends of restaurant lunches eaten under our supervision to go before moving onto short weekends at home and then long weekends at home, pending how each of the tasks go. 


You are off to a good start! Your team seems very competent in providing you with the skills you will need to move forward.

Before admittance he had no cognition of the illness - thought we were all mad!  The disease had a terrible grip on him and although we were getting food into him everyday, his mental health was slipping away and he was at great risk of suicide./QUOTE]

Yes it is sooo common for them not to understand how ill they are. anosognosia: they lack insight into their illness. 
So the risk of suicide is a bit worrying for when he gets home. Hide everything and ensure you are watching him like a hawk for awhile when he gets home. When they get home it is another trigger and sometimes things get worse before they get better. 

While at the table when eating a few "rules" I took from the hospital: No pockets, no hoodies, no long sleeve shirts, no animals to eat the dropped food. You may need to corner him to get him to sit and eat. You may need to "frisk" him after meals (deenl did that) to ensure he does not hide the food. No toilet for one hour after the meal to ensure he is not purging or hiding the food. (go to the toilet right before the meal). Look in his room for hidden food. Buy plastic plates and cutlery. You don't want to have clean up broken dishes. 


.
The hospital have been great and we’ve seen such progress but I keep reminding myself ( and my husband/son) that he won’t be ‘better’ when he comes out.  Our anorexic son himself also keeps saying that the hospital won’t make him ‘better’ but then says that his physical health will be better - he thinks his mental health is worse but doesn’t seem to remember how he was before he was admitted.


Yes when we start to tackle ED the thoughts can get worse. My D was so happy in hospital and so compliant and then when she got home, well, it was a different story. She said too that the hospital made her worse. It will take time and some of what he says now is just ED talk and he may not remember much of the start of the journey. 

Being sad is OK. It is a normal emotion for us as parents with an ill child. We grieve for them and us and our lives as we had seen them. It does get better and it is a hard rocky, mountainous road. But when you get to the top it is beautiful. It is work, a lot of hard work. You sound like you will be quite prepared and I have confidence in your ability to do this.
Please take time for yourself, while son is safe. Do something indulgent for yourself. A nap, pedicure, massage, a hair cut, make-up lesson, shopping just for yourself. Go out with a friend and have some non-ED time.
All the best,
XXX
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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Mamaroo
The transition to a home environment is very hard and expect some bumps along the way, two steps forward, one step back. I agree with what the others have said. It is best to keep everything as close as possible to IP conditions. This might mean that other activities are placed on the back burner, but it is only for a while until your son can manage eating at home without too much anxiety. We didn't visit friends, nor went out for long shopping trips - we just did what we could squeeze between meal and snack times. Later on she was able to eat in the car and we could go out for longer and then still later she was able to eat snacks at the beach, park or shops and now she has no problem grabbing something from the food court. When my d was just discharged from IP, she would protest when I plated her meals, but I told her I was just following the hospital's rules, it made it much easier to 'blame' them. 

It is very normal to feel sad at this stage, but things will get better. Sending you lots of hugs 🤗🤗🤗🤗
D became obsessed with exercise at age 9. 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. She is back to her old happy self and can eat anything put in front of her.
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scaredmom
Hello mumoffantasticboy,
how are things going?
XXX
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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Mumoffantasticboy
Hi scaredmom,  thank you for asking.  It’s been a tricky week.  Our S continues to put on weight as an inpatient but was told this week that we wouldn’t start the last two weeks of the programme until he is 100% weight restored.  I suspect that’s added about 3 more weeks to his stay.  In my heart of heart, I know that is probably the best decision as we will have more ‘wiggle room’ when he is out but he’s so scared and lonely in there.  He’s the only boy.  I’m also really scared about how his mental health will be as he comes out.  
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scaredmom
I actually like that they are really going to get the weight on him. It may be very helpful for his brain when he gets home. I understand the concerns about his mental health when he gets home. My d was more “difficult” when she got home than prior to hospitalization. Having more weight on him may make it a bit easier for you and feeding. 

 I really feel for him being lonely. Are there friends you can take to the hospital for a visit? Or family members like grandparents etc? Are you able to take him out for a movie or a few hours to do some nice things. 
That is so hard.

How are you- really? Take time to care for yourself please. I can imagine how you are feeling. Stressed, worried, relieved they will get more weight on, sad and exhausted and many more emotions that go beyond normal everyday life.
I send you a big hug.
please let us know how things are going we want to help. You are not alone, please remember that.
XXX
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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Mumoffantasticboy
Thank you.  Yes, we took two of his friends to see him last Sunday and are taking another two this weekend.  The hospital have let him ring friends twice a week, now he’s on the peer support table for eating, and we see him all day Saturday and visit one in the week/attend therapy, alongside taking everyday.  I do feel that the hospital are trying so hard to help him but his ASD tendencies also make friend making more tricky.  He says that the girls are kind to him so I think it’s just that he’s choosing not to engage with them really.
in terms of how I am, I think it changes on an hour, or sometimes minute by minute, basis.  I’m still trying to work at the moment and my eldest son is just about to take his A levels so life is too hectic for me.  I’m a teacher and the Easter break is coming up soon - I think I’m hanging on for that.  Will be hard to be at home without our youngest son here but will also give me a chance to try to plan for the return.  I’ve been pretty tearful today.  Hoping tomorrow will be better. Xx
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scaredmom
I hear you about the minute by minute flip flops of emotions. It is hard as a parent to deal with this. 
It is nice that you can take friends to him. It does help him to have something to look forward to.
I hope you will be able to see him on Easter. 
It does get better and remember next year this time, it will so much better.
You and your family are in my thoughts and wishing you peace.
XXX
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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hertsmum
Hi Mumofafantasticboy
Hope you’re ok? I think your son is in the same IP that my daughter was in a couple of years ago.  I received a lot of good advice from this forum and from the unit about handling transition to home (she was discharged after 13 weeks), and luckily it has gone really well. I’d be more than happy to meet you for a coffee/chat to give you some support - I live in Elstree and work in north London - if it would help. Feel free to message me 
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Mumoffantasticboy
Thank you so much, hertsmum.   Have sent you an email x
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