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myson

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Reply with quote  #1 
Hi all
I'm a new member. It's taken me three days to work out now to message.
I Have a son with an eating disorder. He has had it two years. He's currently in London at as an inpatient. This is his second admittion. His illness is to do with his over exercise.
He's about to be discharged in about two weeks. I am really worried he has no better insite to the illness now than before he went in. He's currently at 95% and is saying he's going to self discharge if they don't discharge him. He's 16 years old. Im afraid that if he's discharged he will go down hill straight away. When he's home he doesn't want to stop exercising. I just want my lovely son back and not this evil illness. Please help me with advise x
Torie

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Reply with quote  #2 
Hi myson - Welcome to the club no one wants to join.

It's easy to believe he won't want to stop exercising and will fight you tooth and nail on that.  He doesn't need to have any insight, but he does need to stop exercising.   Most here have found that their Ed-kids have little or no insight until well down the recovery path, and that's OK.  I know my d was wholly irrational about anything ED related so I just tried to acknowledge her discomfort and then change the subject.  Nothing to be gained by explaining or arguing - just a simple, "I'm sorry this is so hard" and then a change of subject is often best.

Is his current team able to prevent him from exercising?  How is his weight?

Best, xx

-Torie

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Foodsupport_AUS

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Reply with quote  #3 
Welcome to the forum. Sorry that you had trouble getting started here.

As Torie has said his lack of insight is not worrying or unusual at this stage. It is even normal for him to say he didn't need to be in hospital, they are over reacting. What is essential is having a plan for how to manage his discharge and in particular his exercise and diet post discharge. Are the team at the hospital working with you, are you linked in with someone else? 
Something that may be appropriate to work with is to consider some form of contract with you son and the team as to his behaviours on discharge. What he is, is not allowed to do. At 16 I am sure he is also eager to be a normal teen, but his ED is probably distorting many of his thoughts. Your son is still there.

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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.
myson

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Reply with quote  #4 
I think because his first inpatient stay was more like a re feeding clinic. When my son was discharged people called him fat and some didn't even recognise him. This left such a scar on him. He was shocked when he looked back at pics of that time. So when he was admitted the second time, to a different hospital it was a group decision that weight restoration would be done slowly with exercise. They have limited it as time have gone by. But it's like a drug he finds hard to give up.
The hospital have been great and we are now back to sessions with cahms when he's home. It's just because he relapsed last time I'm very concerned it will happen again. Specially with his GCSEs just around the corner.
Thanks everyone x
I go to a support group and have never been told of this fourm.
It's since reading my latest books that I discovered it .
AUSSIEedfamily

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Reply with quote  #5 
Dear myson,

Welcome here. You will find a huge resource here that is many years of parent/carer contribution to the effort of fighting the ED demond.

There are lots of links to good evidence based help & a huge wealth of experience from other parent carers who have been in your shoes or similar shoes and we all get EDs.

Pleas feel free to post about anything and even just to vent at times we understand the the need to vent to someone who gets what your venting about & the need to vent.

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myson

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Reply with quote  #6 
Thank you,
U feel so isolated in this illness so many friends and family members just don't get it. I'm shocked in my two years of hell no one has told me about this forum before. Surely cahms should be telling parents etc to help them get knowledge and support.!
AUSSIEedfamily

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Reply with quote  #7 
Dear myson,

I am in Australia and some CAHMS here in Western Australia do tell parents about this forum some dont. If you read Meadow's posts you will see her experience and she actually works for CAHMS in the UK.

From what I read on this forum the experience at CAHMS in the UK varies greatly some know about the ATDT forum some dont.

Our family still dont get EDs even though our D was very unwell. Our D is now recovered and the ed is long gone.

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Sotired

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Reply with quote  #8 
Welcome.the thing is even if you had found atdt,you might not have been ready anyway.i was told about it early on in my ds illness but as we lurched from crisis to crisis I just wouldn't have had the time to look here.
You are here now so that's what matters and we can offer you our experiences and advice,f which you take what works and leave what doesn't.
As others have said,don't look for insight-that's a long way down the road and as with many mental health issues,your son needs to just focus on what needs to be done ,not why-frustrating for us as caregivers,but a reality nonetheless.
Here in NZ we can enact the mental health act if our children try to self discharge from treatment.this is worth discussing with the team where your s is.the worst they can say is no they won't do it,but it should be an option on the table.
Exercise compulsion is very hard to break-we found our d needed as close to 24/7 care to stop that(and self harm which might not be an issue for you).im a believer that only gentle walking for twenty minutes twice a day maximum is a necessary component in treating exercise compulsion.less than that when necessary.there were times our d was just in a wheelchair because she just couldn't do any exercise or she would burn off any small gains she had.
With your s a contract is a good idea,but how enforceable is it?what consequences can you put in place and then realistically follow through on?what backup plans can you and the team put in place so that there's a consequence that if more than a kg is lost he either goes to residential again or a partial hospital program-day programme as its often known.actually,could he go from residential to day programme?that would be a better step down process if it's available and would put less pressure on you.
These are just thoughts but I hope they help

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myson

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Reply with quote  #9 
He returned yesterday and we have just found he has lost another 0.5!while on a weekend home leave. His doctor is going to have firm words with him today. They have talked about sectioning him but that is the last resort. He's never self harmed. Why don't they just get the input output thing.
Thanks so much for your replies it really helps.
myson

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Reply with quote  #10 
He's not discharged yet. He's currently being intergrated back to home and school. They don't think he's ready but my son is threating to self discharge as he's not on a section. They have been great at trying to persuade him to stay longer. We have a sykpe call today to talk about it . He has never stopped being on a meal plan from day one. We are very strict. But it's hard to cover every thing once they try and rebuild their lives after discharge. None of his friends know about his illness. This is his request as he's ashamed of having what he sees as a girls illness.
His BMI is just under 19 and he's 92% weight for height. He was over 100% when he left his first admittion.
It's just frightening that if he's discharged he will just go down hill. He needs longer but how long do they wait. He has no insite and there are so many people that need these places.

Thanks xx
Torie

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Reply with quote  #11 
Quote:
Originally Posted by myson
His doctor is going to have firm words with him today.  


Unfortunately, I can't think of anyone here who reported that firm words were of any help.  The illness is too strong.  Rather than firm words, your s needs the firm, unyielding support from someone who is stronger than even this vile illness.

When he returns home, that will be you.  xx

-Torie

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iHateED

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Reply with quote  #12 
Hi Myson and welcome to the group, though so sorry that you need to be here.  You have been at this a long time, it must be rough on all of you.  My D did not have exercise compulsion but from reading the stories on here, it seems that the only way to break the behavior is to totally stop the exercise completely.  Your son may be doing exercises in private so is he getting 24 hour supervision at the facility?   I know others on this forum who have found their kids doing sit ups in bed or push ups in the bathroom when no one was looking. 

Hang in there and please take care of yourself too [smile]
hopefulmama

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Reply with quote  #13 

I can relate to your anxiety about your son being dismissed from inpatient.  My daughter was inpatient twice and I recall being so anxious about her return home both times.

It helped me to remember that inpatient usually is only good for getting on some weight and maybe stabilizing.  The real work actually begins when they come home. I think the first time my d came home I thought she was cured.  It helped me to look at coming home as the beginning instead of the end.

Upon her first dismissal the very old school facility (I had yet to find the forum) told us not to be the food police, etc.  You can guess how that worked out. My d quickly lost weight and ground and ended up back inpatient again within 6 months.

The second inpatient stay we finally made some progress thanks to a great evidence based facility.  I was determined to do things differently this time  The facility required we have a contract in place with my daughter before she could come home.  We found this invaluable.  We covered things like what would happen if she didn't eat meals, plan for continuing to gain or maintain weight, exercise (would it be allowed and if so how much), required attendance at her PHP program after dismissal from residential, etc. Although we wrote it as a best case scenario, we covered what would happen if she was not able to comply.  I think it really helped my daughter to set the expectations for when she came home in the contract.  I know it helped me because I had a plan for how we were going to handle it if my d could not comply.  I am not saying at all that it was easy, but it always helped me to have a plan.

As for exercise, we tried to let my d continue to exercise early on and it never worked. In the end, she had to stop all exercise for 3 months (other than casual walks with the dog -and me to ensure they were casual) until the compulsion was gone.  It was torture for her at first and I would catch her trying to sneak out to the gym.  By the end of the three months she would have rather napped than gone to the gym. 


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Enjoying my 21 year-old daughter's achievement of active recovery that was made possible by the resources and education I found on this forum.

Don't give up hope!
myson

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Reply with quote  #14 
Thank you for the advice.
In reply to some of the questions.
He does secret exercise. In his unit he watched ever 15 mins and has not bathroom privacy.
We are firm with him but it's difficult to keep him in and not seeing his friends when at one point he wouldn't
Want to socialise with them.
His school does know what's happening and he has supervised lunches.
He says he wants people to see him and not the illness.
Meal times and snacks are and have always been supervised, We have to be very vigilant.
He's on one of the units highest diets but still sometimes not gain.

Living in hope for a brighter future x
Torie

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Reply with quote  #15 
Quote:
Originally Posted by myson
I think because his first inpatient stay was more like a re feeding clinic. When my son was discharged people called him fat and some didn't even recognise him. This left such a scar on him. He was shocked when he looked back at pics of that time.  


ToothFairy already addressed this point, but because it's so important, I want to underscore what she said (and add a bit).  It is unfortunate that the new weight tends to settle on the belly and in the face initially.  It does redistribute eventually, but for a period of time, they will have to live with that shape.  It really (!) sucks that people called your son names last time, but one way or other he will need to find his way through not just to the previous weight but - first - to maintain that weight and then add a little each year as is normal and expected through the young adult years.  

My family's experience has been pretty typical in that my d was most distressed about her weight as she approached the weight she needed to be.  Once she had actually gained the rest of the weight she needed, she was much more comfortable with this (higher) weight than she had been at the somewhat lower weight.  Weird, but typical.

I'm a little confused by the comment you made about your son's visits with friends.  In my experience, their friends can be either a help or a hindrance.  If you want to let us know a little more about your situation on that, some of the veterans can help brainstorm ideas for positive visits, if you would like.

Keep swimming. xx

-Torie

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

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Reply with quote  #16 
To play out with his mates he wants to cycle. Which is about three miles on way. We do insist on taking him sometimes but he says he just wants to be a normal 16 year old boy. I suppose because he's been in inpatient since November, we just want to feel like a normal family for a while. It's lovely that he's socialising and building friendships again. They know he's been poorly and also know he's been away. Luckily boys aren't into gossip and they haven't asked much more.
He's a short boy only 5ft who's now going through puberty. He's had bone scans etc they say he's lack of height is more to do with late puberty (dad was the same). They said he's lucky because his low weight which wasn't really low for long both times and hopefully did not effect his height.
Which we all believe in the beginning was maybe a trigger. His friends shot up and he was so small. He no longer was as good as them athletically with sports. So his way was to become fitter.
I remember the day when he was worried about swimming at school. They had puberty going on and he didn't . He was worried they would notice. That day he came out as pleased as punch. They admired his six pack (14years) no one notice the lack of hair on his body.
myson

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Reply with quote  #17 
He's never had meds yet. Even though it has been offered to him.
His mates are good lads, he's know then all his life.
He's never missed meals they are always with us or supervised.
Sorry if I wasn't clear.
mjkz

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Reply with quote  #18 
Quote:
but he says he just wants to be a normal 16 year old boy.


Yes, but he is not.  A normal 16 year old boy doesn't end up in the hospital with anorexia unable to eat enough to sustain his activity level.  Until he can eat enough to sustain his exercise level, you have one of three choices:

1.  Cut down his exercise until he can eat enough.
2.  Add in extra food before he cycles off with his mates and add in extra after to make up for what he burned off cycling.
3.  Prepare for another hospital stay.

Sorry if that seems simplified or abrupt but it is a matter of input VS output in terms of energy.
Torie

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Reply with quote  #19 
I like toothfairy's suggestion of inviting the friends over to your place rather than going on the bike ride.  I wonder if they could be enticed to play a board game (or video game) or watch a movie.  I found it was sometimes useful to make a very specific suggestion (e.g., "Why don't you invite ___ over to watch ___?").  And if you're going to ban the bike, it might help if you let him know you are happy to drive your s and his friends to the movies or park or wherever.

I seem to remember that someone here explained the ban on exercise by telling friends it was due to heart issues, which is true.  I think, though, that it would be prudent to offer the friends and their families some sort of explanation so that they can hopefully get on board watching out for your son.  If they aren't made aware that exercise is harmful for him (because of the heart issues?), they are much less likely to support / suggest options that are healthy for him.

It's so hard - I'm sorry.  Hang in there.  xx

-Torie



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

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Reply with quote  #20 
Hi all,
Happy Easter, I'm setting a new goal. That is for next year I'm going to buy my s an Easter egg that he will eat.
Instead this year I got him a new diary. Which helps him write all his thoughts down.
He's really struggling to keep still I can't see him being discharged on the 24th. I can see he's not ready for recovery. He can't even revise as he can't seem to retain anything. He still hides food if you take your eyes off him.
He goes back to IP tomorrow which I still think he needs.
Such a shame he looks great but he's so far away from recovery. [frown]
deenl

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Reply with quote  #21 
Hi myson,

My son ate a mini egg yesterday for the first time in two years! I feel like every little step should have confetti and balloons!

This is a chronic illness and unfortunately takes a very long to recover from. But you will get there. Be sure to raise your thoughts with his team and best of luck.

Warm wishes,

D

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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, tons of variety in food, stepping back into social life. Sept 2017, back to school full time for the first time in 2 years. Happy and relaxed, just usual non ED hassles. 

  • 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. (but don't give up on the plan too soon, maybe it just needs a tweak or a bit more time and determination [wink] )
  • We cannot control the wind but we can direct the sail.
mjkz

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Reply with quote  #22 
Quote:
Such a shame he looks great but he's so far away from recovery. [frown]


I hate to be the bearer of bad news but he is not going to come home from IP cured.  You will most likely have to deal with everything you are describe now when he comes home whether that is on the 24th or a month from now.  IP gets them weight restored and recovery happens when they leave and have to live life at the new weight, eat enough to sustain that life, and keep eating.
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