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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Lefty
Dear all
I have been reading posts on this group for a long time now.  I have 17 year old twins now and when this first all started for us was April 2018 - I can´t believe it has been two years already.  My twins were obsessed with their height - not their weight! which was very confusing to me as they had always been foodies and loved baking so couldn´t let go of that but we became aware that they were doing weird exercises to try to keep their legs short!  At one point she was doing 2 hours in the down stairs toilet and 2 hours upstairs at night trying to compress her legs in between the bed and the wall or one wall and another in the toilet.  She would be screaming and sweating so much.   I searched and searched and couldn´t really find any other cases the  same so I didn´t feel we had the same problem as others on this forum and didn´t really know where to start explaining their strange behaviour.  We got into CAMHS in September 2018 and the psychiatrist immediately sent us to the EDS at Royal Free - But when they asked us about the eating habits of our children I was positive it wasn´t an eating disorder as they ate so much!  so I stupidly (in hindsight) lost that opportunity and defended the OCD/ Height obsession disorder.  they were due to take GCSEs in 2019 and we battled to keep them on an even keel through all of that and CBT therapy at CAMHS which they wouldn´t engage with at all.  Anyway fast forward 2 years and we have been through a really tough time stopping behaviours - We have been through GCSEs and passed well enough to get to better schools - Twin 2 has pulled herself out of it but we are still struggling with Twin 1 as I will call her and Twin 2 is depressed as a result of losing her sister. 

My daughter currently weighs 46.2 kilos and is 156cm tall.  No periods since April 2018

Last weekend I had enough of begging her to come out of the toilet and stop crying on her own in there and doing whatever she was doing that I decided to put a proper lock on the door.  We sat and watched as she basically stopped talking to us and stopped eating (remember she is not typically AN and normally eats but I have now realised that she is probably burning all her calories in the toilet.) After 3 days of locking her out of the toilet she came to me on Sunday night and begged me to trust her - telling me she would take all supplements that I wanted her to take and would come and see me for a walk or a cuddle instead of going into the toilet when she was feeling anxious or alone.  She said that by locking the toilet I had set her back two years to when we first started all of this and I became concerned that she was actually right - my Husband was really firm (especially for him as he is a softy) and calmly said no we need to do this - but I became more worried that I had upset her more and would damage her more so explained to my husband that she may have PTSD from before which is being retriggered.  On top of that she hadn´t really eaten in 3 days so I was concerned about her weight going down even further. 

I caved in and unlocked the door and straight away she was all hugs and tears and it felt like we could really work together if I could just trust her...… that was hard and I bit my lip but very soon I have realised that I can just go and get that MUG tattooed on my forehead.  This morning I woke up at 5.30am and she was already up and probably about to go into the toilet for her "session" - so I suggested a walk - although I was still half asleep. It wasn´t basically a very therapeutic walk as I had just stood in the way of OCD and it wasn´t happy.    I now wish I had left the lock on the door but know that if I go back and put it on she will make out that I am playing mindgames with her and I will believe her!  

I have emailed CAMHS about this on Monday and am waiting for a reply - basically I know now that we need SERIOUS help - My husband are WORN OUT from so many therapy sessions (supporting our positivity but not getting far with Amy - so basically kept us going clinging on to HOPE - but not addressing her weight etc)

In November and January I expressed concern over her weight and we said we would try one more time to feed huge amounts of calories in normal meals - We have been doing all this and more - over lockdown we played Come Dine with Me and she did put on about 2 kilos at the beginning with some serious eating but it has all fallen away and now we are below where we started.

When lockdown started I was hopeful that the pressure of not needing to make friends (which she finds hard) and being at home with her two sisters may help to relax her enough to let go of the OCD but now I am PISSED OFF and just want to get on and crack this nut.  I now see Lockdown as the perfect opportunity to try to sort her out before school goes back again in September.  

So I am asking for help as to where to go and what to say to who to get things taken seriously.  We are based in Barnet North London and I have seen that the Priory in Southgate has 3 beds  apparently - but I would be open to ALL advice having basically kept my silly and very confusing to myself for so long!!!  We just don´t have the energy to do this on our own any more.

 Thankyoux
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Foodsupport_AUS
Welcome to the forum. It sounds like you have had a difficult time over the last few years dealing with things. 

It is important to know that many with eating disorders do eat regularly. They will often have compensatory behaviours like exercise to manage this. 

You mention some very worrying things. In particular that your daughter has not had a period for two years, suggesting she is at high risk of osteoporosis. She also appears to have a number of obsessive and compulsive behaviours.

We cannot diagnose here, but it does sound you do need a lot more help with your daughter who appears to have some unusual behaviours. You are at a particularly difficult time given COVID and that your daughter is 17 years old. In the UK many services expect the young person to engage with the service themselves at this age. The sooner you can get on to this and get a clear idea as to what is needed, almost certainly stopping all exercise and gaining some weight will be needed. She may need some other investigations to look for any other cause of absent periods, which can stop with excessive exercise.

Please ask questions once you have heard back from your team. 
D diagnosed restrictive AN June 2010 age 13. Initially weight restored 2012. Relapse and continuously edging towards recovery. Treatment: multiple hospitalisations and individual and family therapy.
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deenl
Hello Lefty and welcome,

I think it is quite common for it to take quite a while to get clarity when our children do not fit easily into the stereotypical portrait of the various mental health diagnoses. In our case, I have a son, who did not have body image issues, who was not phobic about eating fats, who did not strive to be thin or have a muscled body. We went from pillar to post for a number of months with an extremely sick child who was getting worse and worse. Eventually, we did get a diagnosis of an eating disorder but, I think it is important to be aware that we don't know what we don't know and there may be a different diagnosis in your case.

The website Feed Your Instinct has a checklist that might prove useful as you approach healthcare professionals. It is an Australian website but is suitable for everyone. My only doubt is that it your own observations are probably going to be very important especially if your daughter is not stereotypical.

Here is an article on compulsive exercise and eating disorders that may be of help to you in clarifying your thoughts. And another by the well regarded Dr Lauren Muhlheim

Lefty wrote:
We sat and watched as she basically stopped talking to us and stopped eating (remember she is not typically AN and normally eats but I have now realised that she is probably burning all her calories in the toilet.) After 3 days of locking her out of the toilet she came to me on Sunday night and begged me to trust her - telling me she would take all supplements that I wanted her to take and would come and see me for a walk or a cuddle instead of going into the toilet when she was feeling anxious or alone.  She said that by locking the toilet I had set her back two years to when we first started all of this and I became concerned that she was actually right - my Husband was really firm (especially for him as he is a softy) and calmly said no we need to do this - but I became more worried that I had upset her more and would damage her more so explained to my husband that she may have PTSD from before which is being retriggered.  On top of that she hadn´t really eaten in 3 days so I was concerned about her weight going down even further. 


This is all quite familiar to me. When we started getting that feeling that something was up with our son, I was afraid to come down strong on him, I was afraid to make things worse and that I might be making a mountain out of a molehill. When we eventually did start to deal with the issue, it was all very emotional, with all of us in tears and our son promising faithfully that he would eat. I believe that he genuinely meant that promise but the terror that he had of food meant that he could not follow up on his promise. I, too, had a period where I thought it was better to keep things calm so that he would eat something, anything but I came to realise that I was only prolonging the illness with all the medical dangers attached. 

It is really, really common for issues to come to a head and for behaviours to increase once the parents start to stand up to the worrisome behaviour. I think the fact that she stopped eating when she couldn't exercise is a very significant reaction and this should be very clearly shared at any professional assessment.

Lefty wrote:
I caved in and unlocked the door and straight away she was all hugs and tears and it felt like we could really work together if I could just trust her...… that was hard and I bit my lip but very soon I have realised that I can just go and get that MUG tattooed on my forehead.  This morning I woke up at 5.30am and she was already up and probably about to go into the toilet for her "session" - so I suggested a walk - although I was still half asleep. It wasn´t basically a very therapeutic walk as I had just stood in the way of OCD and it wasn´t happy.    I now wish I had left the lock on the door but know that if I go back and put it on she will make out that I am playing mindgames with her and I will believe her!


I know that it was impossible for me to have my usual relationship with my son while I was interrupting unhealthy behaviours. In my mind, I focused on being the firm parent and stopped expecting him to be warm and affectionate to me while he was dealing with the stress and emotional dysregulation of the illness. I am glad to say that our relationship is once again easy and loving but it took a long time!

Learning to deal with interrupting these sorts of behaviours is a trial and error process. Even when our kids have a more typical presentation, we never know which tips and techniques are going to be the ones that work in our situation and with all the personalities in the family. In my opinion, there is no way to avoid the learning curve involved. We begin completely and utterly naturally with a more collaborative approach with our children and gradually adapt depending on the feedback we get. It is totally normal to want to believe that once you show you mean business, a page will be turned and behaviours will improve. We want to believe our kids. Unfortunately, it is usually a bit more difficult and time consuming to support long term improvements. But the way the situation played out gave you really valuable information and feedback that will help you in the future when you are in a similar situation. We have all been there and done that.

I wonder what would happen if you and your husband went back to her and calmly and matter of factly said that you have thought about the issue of the bathroom door and you feel it is better to leave it locked. Would your husband support that? There is no doubt at all that she will argue against this with the skill of a High Court barrister. At least my kid did! And when I remained calm and firm, he would become emotional, usually raging and then he would not eat. (12 hours of not fluids or no/minimal food for 24hours = contact A&E or GP for urgent assessment) But not challenging the behaviours would have left him dangerously ill, both physically, emotionally and mentally. We have a saying here that when you are going through hell, keep going. The only way out is through. I am not saying this is the only way forward, I am only saying that there are times when we, as parents, try something and it's ok to backtrack depending on how it works out. Maybe give it some thought and some discussion with your husband.

Wishing you 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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Enn
Dear Lefty, I am so sorry you needed to find us. I hope we can be a source of information and support to you as you navigate your situation.
Please read what deenl and Foodsupport have posted about and keep reading all you can on EDs. Knowledge is power.
What is she eating now? We can  help with that even before you get any professional help. Has she had a medical assessment recently? If not she needs one with blood pressure lying and standing and heart rate lying and standing. That is called orthostatic BP/vitals. 
https://www.avalonhills.org/orthostatic-hypotension-what-do-i-need-to-know/

Please ask away. We all do wish to help.

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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Torie
Hello and welcome.  So sorry you are having all this difficulty although very pleased that Twin 2 has turned the corner and reversed the behavior.

I wish you a lot of luck in finding a professional to help.  Most of the time, though, we must do the heavy lifting ourselves, at home.  As Deenl said, I wonder if your husband would be agreeable to working with you on this effort.

It does sound like the bathroom door needs to be locked, however much havoc that creates.  You did it once, and you can do it again.  And then your d needs to regain the weight she needs.  This, too, will be oh so difficult.  But your d is 17 years old and your parental authority is fading with each passing month.  There is no time like the present.

Please feel free to ask all the questions you like. xx

-Torie
"We are angels of hope, of healing, and of light. Darkness flees from us." -YP 
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