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

Welcome to F.E.A.S.T's Around The Dinner Table forum. This is a free service provided for parents of those suffering from eating disorders. It is moderated by kind, experienced, parent caregivers trained to guide you in how to use the forum and how to find resources to help you support your family member. This forum is for parents of patients with all eating disorder diagnoses, all ages, around the world.

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Fiona_Louise
Hi all, first time I have posted.  I must admit reading all the posts scares me for the future but I can see the benefit of such a supportive community.  My son (14yrs) was diagnosed in March and his health deteriorated very quickly.  We had 2 spells in hospital but have been refeeding at home for about 12 weeks.  Progress is slow.  I need help with regard to electricals.  We were told to let him watch his ipad etc whenever to help take his mind off the anorexia.  Now, he just stays in his room on the ipad all day.  He doesn't even eat his meals with us.  I am so scared to hold him to the normal level of discipline in case he refuses to eat again due to me taking control away from him.  He hasn't spoken to me since March and if I try to talk to him I get an abusive whatssapp message blaming me for everything. He seems to have an absolute hatred for me - I cut myself and needed help with the bleeding but he just turned away and wouldn't help me - is this normal?

Thank you x
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deenl
Hi Fiona and welcome to the fourm,

I have 3 sons and the middle son is the one with RAN. He was diagnosed when he was 12 and we could only refeed very, very slowly but he is doing very well now.

I do remember a similar endless stage where our son gained about 300g per week, however, it was week in, week out and so did add up in the end. I struggled with the tedium of shopping, cooking, cleaning and supervising meals. I used to describe it as the most boring and most important work of my life, all roll up together.

During the intense refeeding, our son would be called to the table in the living room. One parent and the other kids ate in the kitchen, the other parent supervised our ED son and ate either before or afterwards. Our son did bring his iPad to the table and it was invaluable for us as an aid to eating. He would look at youTube videos for about 15minutes while he calmed himself enough to eat and would continue to watch them while he ate. And after the meal it would keep his mind off the ED torments.

You say that your son doesn't eat his meals with you but is he being supervised by a parent while he eats? I ask because the anxiety over eating will make our normally honest kids do extreme things. Even though our son was being supervised, he managed to slip food up his sleeves or into his lap and flush it down the toilet. Once we discovered that, we had to frisk him for a couple of weeks after each meal (3 meals and 3 snacks). The first couple of days he was angry but I think he was actually relieved. He is an honest kid and did not like decieving us. When we removed the opportunity for deception he handled it well and after the first couple of days would pull up his own sleeves and turn out his own posckets with a sigh or remind me if I forgot. Most of us have found that if we don't see the food actually going into their mouths, then we can assume it has not.

Another issue that I would urge you to check is what he is watching on the iPad in his room. There are websites that encourage people who have an eating disorder to continue to restrict and that are very dangerous to their condition. We know our son so we knew that a check of his history was sufficient but as a double check we have a family monitoring system of internet use.

My relationship with all my sons is relaxed, warm and affectionate. Disicipline is calm and understanding, firm enough when needed. Except for when ED was raging. Then the extreme stress and anxiety at being ill showed itself by being unbearable towards me. He would turn his back or leave the room if I came in, he would ignore or snarl at me if we had to communicate. I've been spat at, kicked and scratched. In a way I was glad that he targeted me. The ED thoughts are often directed at themselves and he was going through enough. I think there were two reasons that he targeted me - one, I was doing most of the refeeding and, two, he knew that I was strong enough and that our relationship and love would survive it. And his subconscious thoughts were right, we are almost totally back to normal and have lots of affection and laughs again.

My son was totally unable to cope with life while he was ill and indeed ended up staying at home for two full school years (that is extreme, I have never heard of anyone else staying home that long) At first he was only in his room on the iPad, actually no, first he would only sit rocking on the couch but then he was in his room all the time. I would go by with an 'excuse' as often as I could - diid he have anything for wash, any glasses in his room, was the heating too high/low, etc and somethimes I would tell him that I was just checking to see how he was. Naturally, I got the head bitten off me each and every time but I was damned if I was going to let ED dictate whether and how I would connect with my kid. I also consciously wanted to guide him and make it easy for him to pick up our normal relationship again. I wanted to show him that I was a rock, dependable and loving no matter what. I did not want to allow the chance that the ED thoughts would start to say 'See, see she doesn't love you anymore'

The good news is that he has just started back on his third year since his return to school, will graduate on time and ticking along socially at school. His introverted self was never going to be the life and soul of any gathering. The cure, in our case although not always, was 3 meals/3 snacks day in, day out of sufficient amounts and nutritional density. After the first while, we saw continuous improvement in his mood and his relationships.

I wanted to let you know that what you are experiencing is all pretty standard as regards the symptoms of the illness. What is not standard is how you deal with these difficulties. You, your son, the rest of the family and your situation is totally different from mine so many aspects of how you address these issues will be individual to you. I used to come to the forum for a smorgasbord of ideas, I'd implement the ones I thought would suit us, tweak others and ignore still others. I have come to see that an element of trial and error is an inevitable part of challenging the illness. We have a mantra  'feedback, not failure' You tried something, it worked or didn't and you take the next step then. You know your son best and you are best placed to figure out what has the best chance of working.

Please feel free to ask any further questions, we are only too happy to help and support your journey,

Warm wishes,

D

P.S. I know that reading around the forum can be scary, even daunting at times but I firmly believe that knowledge is the best tool that we parents have for supporting our kids back to a healthy and happy life. Forewarned is forearmed!
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. [thumb] 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.
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Mamaroo
My d used to live in the spare bedroom (we moved there so that I can be with her during the night) and all she did most days was to sit on the bed with my iPad (which later become her ipad). She was allowed to go on the tablet after every completed meal. She ate most of her meals in the room with me superviseing and whilst playing candy crush, I did not mind at that stage, since she was eating. Do check what he is doing on the tablet. These days there are devices which you can connect to your modem to filter content, we are using Circle with Disney. As for the rudeness and total lack of empathy that is very normal. That will also get better with brain healing, which starts at around 6 months post WR. When your s reaches WR, you can put into place stricter rules with regards to the iPad. We did it gradually and replaced iPad time with going to the shops, movies, beach etc. Now she spends the same amount of time on the tablet as her sister.
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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workingthrough
Mamaroo wrote:
My d used to live in the spare bedroom (we moved there so that I can be with her during the night) and all she did most days was to sit on the bed with my iPad (which later become her ipad). She was allowed to go on the tablet after every completed meal. She ate most of her meals in the room with me superviseing and whilst playing candy crush, I did not mind at that stage, since she was eating. Do check what he is doing on the tablet. These days there are devices which you can connect to your modem to filter content, we are using Circle with Disney. As for the rudeness and total lack of empathy that is very normal. That will also get better with brain healing, which starts at around 6 months post WR. When your s reaches WR, you can put into place stricter rules with regards to the iPad. We did it gradually and replaced iPad time with going to the shops, movies, beach etc. Now she spends the same amount of time on the tablet as her sister.


This was our experience almost exactly. In the beginning, just getting food in (and keeping s safe from himself) was absolutely all that mattered. 

In time, he gained and his brain began to heal. As this progressed, we said “it’s an eating disorder not a rudeness disorder, please don’t use those words or that action.” We did not do that in the beginning; but once he was making good progress. It only took a few reminders and his behavior truly improved as he gained weight back.

In time, he started playing with siblings, reading a book, creating something, playing with a friend, etc. Now we’re in a place where we can eat altogether at the dinner table as a family. Hardest (and longest it seemed) process ever. Just know that it will come. It’s survival in the beginning. He just needs that food and healing will come. 
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deenl
 The thing is that this son has never been that interested in screen time but when he was ill the combination of malnourished brain and ED cognitions meant that his concentration was shot. He could not focus or follow much, he could not even read (for him this was unheard of!) But with improved nutrition his ability to focus has come back and he is more like himself - not exactly the old self, he is a few years older, a teen now and someone who has had a life-threatening illness so naturally he is not the same as when he was 12 but still the person we recognise and love.

Warm wishes,

D
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. [thumb] 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.
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Fiona_Louise
Morning guys, thank you so so much for your responses. Ive called CAMHS but they don't open til 9 and I hope someone can give me some advice.....last night we told both sons (14 yr old with ed and his 12 yr old brother) that wifi was going off at 11pm as we all need to get back into good sleeping habits ready for school in Sept.  He came downstairs (which is not unusual as when we go to bed he comes down to feed bearded dragon) and took a knife to kitchen cupboards (writing profanities) and smashing a monitor screen. My husband came down to check on him, shouted and he came up stairs.  I sat with him - he was clearly anxious, very worked up but also upset.  He told me how much he needed the screens to be able to cope, was sobbing and for the first time in a long time allowed me to kiss his head.  We have come down this am to find he had also slashed the sofa, broken a work laptop...literally a few thousands of pounds worth of damage.
I am really worried about keeping him safe.  Please can anyone help? xx
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Foodsupport_AUS
ED always manages to throw up a new problem. That is one expensive anxiety attack, however just because he is ill does not mean it should go unpunished, nor does it mean your boundaries were unreasonable. 

No wifi after 11 sounds like a perfectly reasonable and appropriate boundary. The lack of sleep which may go with using electronics all night may well be exacerbating his anxiety and mood issues rather than helping them in the long run. Hopefully CAMHS will be able to offer him more in the way of support ? CBT/DBT with a view to helping him deal with his anxiety and emotions. It sounds like he needs to learn a lot more new skills, zoning out on electronics is not a solution for the long term. I would continue with the wifi curfew. 
In terms of consequences for the damage he has caused - he may need to do a lot of chores to help fund the replacement/repair of what has been damaged. 
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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Fiona_Louise
Thank you Foodsupport, it's good to hear I wasn't being unreasonable. Discipline frightens me as I worry so much he will then start restricting again so I always feel hostage to the ed.  Agreed, him only having one coping mechanism is not helping.  He refuses to talk to anyone - CAMS support/psych, family.  This exacerbates the problem and seems to restrict CAMHS getting the right help he needs - whatever that may be. xx
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deenl
Hi Fiona_Louise,

I remember these episodes as some of the most difficult experiences of an already difficult experience. He and I and often my husband would end up in a heap in the middle of the floor sobbing. It all felt totally unreal and so removed from our normal life. The fear and confusion that there is something more, something even worse than ED is very strong. As I look back I have some thoughts that I hope will help cut through the fear and confusiion and also give you some practical steps to take. As always bear in mind that I live in a place with a different health care system and anyway, what worked for me may not work with all the individuals in your life but at least you will have some ideas to start with.

Firstly, my son had very similar absolute ... gosh, it's hard to find a word that fits the extremes of the loss of control, anyway, for want of a better word I will call them meltdowns. My son targeted his own artistic works (he calculated he had destroyed about 80 hours of work in just one incident) and he also self harmed during these times so your fears for keeping your son safe are reasonable.

My first practical suggestion is to try to remain as calm as you can. Fake it until you make it. I believe that our kids cling to our calmness when they have absolutely none of their own. As I said above, we did often end up sobbing with him, especially in the beginning when such incidents were so shocking that our own emotions did burst out. We choose to remain with our son at these times, or at least just outside the door when the violence was directed at us. This was mostly to protect him from self harm. After the first couple I removed all his remaining craftwork from his room and the house, together with other precious and fragile objects. They were boxed up and stored away.

My second practical suggestion is for you and your husband to think about how you speak about these incidents. When all was peaceful again, we told our son that they were scary to him and to us but we knew that they were symptoms of his illness and he would not be punished for them. We loved him and we would be proactive in keeping him safe. and they would pass in time Our son had already been suicidal so we were not shy about addressing the elephant in the room and asking directly if he had thoughts of harming himself and did they include suicidal thoughts. I researched what to say on suicide prevention websites.

Because our son was at times suicidal and self harmed we removed all the methods that would make this easier to do. Knives, medications, cleaning products, ropes etc. He still self harmed but then often used his nails instead of a knife. Some harm reduction.

I know that for my son the nights were absolute tortureous; alone in the still of the night with the cruel and nasty ED thoughts and extreme anxiety. We slept with him sometimes; at times for his safety, sometimes we sensed that he needed it and sometimes his fears were stronger than the ED and he asked us to. I also gave him melatonin an hour before bedtime to help him sleep. This is a medication that, as far as I know, is completely safe even at low weights. It was initially prescribed by a psychiatrist but is available over the counter. The dosage he took was much higher than the over the counter directions so perhaps run it by a doctor first.

Another step we took was to get the number of the mental health crisis team as the meltdowns usually happened outside office hours. I did ring them once and they were useless but the team in your area may be better. Here's hoping. It can also be helpful to make contact with your local police and ask what is their policy if you need to call them. Some forces have a mental health liason officer and most will attach a note to your address to forewarn any responding officers of the situation and to de-escalate the situation with compassion. Obviously, this depends a bit on luck and the individual responding officer. An alternative if things are really out of hand is to call the ambulance. Your son will then receive a mental health assessment in the ER. These feel like frightening steps to take but ultimately your son's and your family's safety is paramount.

You will be extremely relieved to hear that gradually, with regular and sufficient nutrition, the meltdowns got less frequent and he was able to return to a more normal mood quicker and quicker. Eventually, they just peetered out. For us it took nothing more than food, support and patience.

You are no doubt concerned about your other son. I have summarised what we did for our other sons on this thread.

As I said, this is just what we did. I do know that other parents have been firmer in how they react. If I am remembering correctly, one had a safe corner with a weighted blanket to sooth and other items and would send her child there. Others have had the police come and talk to the kids and that has been enough. As with all things ED there is unfortunately an element of trial and error in finding what works for your son. I recommend that you use the forum search button to look for similar situations and gather ideas that might help you.

It is also inevitable that as you challenge the symptoms of the ED there will be extreme push back. It feels that tackling the illness is not working and is just making everything worse. We have all been there. Unfortunately, not tackling the illness will leave your child in a worse place with a severe and enduring illness that may take their lives. We like this quote which may or may not come from Winston Churchill "When you are going through hell, keep going." In other words, the only way out is through.

We are all rooting for you and sending you continued strength and courage,

D
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. [thumb] 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.
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Mamaroo
How are things going now? I'm just glad he didn't turn the knife on himself. We still have 'carvings' on my d's bed as a reminder of the darker days, but today things are back to normal. Just hang on. Sending you lots of hugs 🤗🤗🤗🤗
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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PurpleRain
Hi Fiona, how is it going? Thinking about you
13 yo d started to eat "healthy" september 2018, she had a growth spur a bit later, followed by tummy bug. She started restricitng breakfast and school lunch in january 2019 (that we know). We are refeeding at home (succesfully I think) since the beginning of march.
I have found inner strenght, patience and compassion that i did not know I had. Never retreat, never surrender
Just keep feeding
 
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workingthrough
Sending a hug your way as well. I hope things are okay.

S struggles more than ever when he’s overtired, esp. when his weight was low. We too sat with, slept with, cried with, and held him physically some nights to keep him safe. We did like pp and used melatonin. S also started on sertraline. I don’t know if the medication helped or the weight gain/getting fats in his diet, but we were desperate in those dark days and willing to try anything. S required constant, constant supervision. It was such a scary time. My heart hurts for you and any walking this path. I wish we could help more and give you a break. Sending much love your way tonight. 
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Fiona_Louise
Hi All, thank you so so much for your responses and for also checking in on us.  Deenl your response truly helped, in particular with keeping my husband on side/calm.  He mostly understands but did find it hard keeping his shizzle together when things he has worked hard for had been destroyed - understandable.

Strangely my sons outburst seemed to get something out of his system (he hasn't really spoken to anyone since diagnosis) and he did seem a little friendlier towards me - didn't pull himself away when I touched his arm and even let me kiss his head.....although today back to normal 🙁.

Afraid to say CAMHS contact was of no use.  Meds aren't making any difference so she wants us to wean off them.  She did mention something for his anxiety but thought it may make him tired and so not suitable for returning to school - not sure if anyone else has any thoughts on this?

My son has agreed to meet with is new form tutor on Tuesday, the day before they go back to school.  I am hoping this is a positive sign that he does truly want to go back.

Thank you again for the love and support, what a great community to not want to be part of!! xx
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sk8r31
Sending warm support to you, and glad that your s seems to be calmer after the challenging outburst.  Not sure what meds your s was on, but certainly something to help with anxiety may be appropriate.  Also helping him with distress tolerance skills might be a good idea.  Here is pdf with some examples that might be useful.  This is another handout that is helpful; it is geared for university students, but you may be able to adapt it to help your s.

It does sound positive that your s is willing to meet with his new form tutor, and that school is a motivator for him.

And yes, we are the club that no one would ever choose to join!  But such great peer support that can pull us along when we are at our lowest ebb.  Hang in there...
It is good to not only hope to be successful, but to expect it and accept it--Maya Angelou
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deenl
Hi Fiona_Louise (and husband)

So glad that things have calmed down a bit. I can absolutely understand how difficult it is to see anything destroyed, it is completely against our normal expectations of behaviour. Sometimes I really do feel like we live in a twilight world.

Perhaps if you post the medication your son is on and the new one suggested by the psychiatrist, forum members could chime in with their experiences. SSRI's tend not to work in many cases when the patient is very underweight (The psychiatrist on our ED team did not know that ðŸ˜®

Julie O'Toole of the Kartini Clinic has a guest post on the FEAST blog that may give you some background information on medications.

The one thing I will say is that we had many meltdowns as we challenged the symptoms of the eating disorder. Like you said, it does seem to release the tension when it has become unbearable for them. I would encourage you and your husband to take an hour or so when you are both calm and to develop a Plan A,B, and C and to share this with your other son. It was very reassuring to our other 2 kids to have a plan to help them with the distress of seeing their brother so distraught, to hear that this was common when dealing with the illness, that it would pass and that we, the parents, had a plan of action. It also helped reduce our anxiety and helped us to work as a team as we had discussed differences when emotions were calm. As I said the episodes remain some of the most distressing memories I have. But we made it through and I am sure you guys will too.

Wishing you all continued strength and courage,

D
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. [thumb] 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.
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