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deenl

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Reply with quote  #1 

I would love to hear from any other parents struggling/who have struggled with this problem, . There really seems to be a sub-group of us on here at the moment.

I know pretty much ALL kids show an uptick in resistance and freak outs but most people are able to support their kids to eat eventually. I never could, any pressure, no matter how loving, resulted in him eating absolutely nothing, sometimes for days. The usual escalations all the way up to ng tube IP, resulted in him always pulling out the tube asap. The doctors could see no way of treating him IP without sedating him 24/7 and because of his severe under-nutrition this was deemed too risky as well as ultimately unhelpful.

He was so incredible depressed and bleak that he had no life to stop; no joy, no pleasure, no soothing distractions, nothing. We actually realised we had to do the opposite of LSUYE; we had to give him a life worth living.

So 8 months ago (God, has it been that long?), we brought him home. Our initial goal was to stabilise him so we:

  • created a safe, warm, dependable environment. We saw this as very important for the whole family. We achieved this mostly through our own emotional behaviour; using warm and affectionate voices, no heated discussions, acting as if nothing happened after meltdowns, treating him as if he had any other illness with unpleasant symptoms
  • Brotherly love. I coached the older and younger brothers to interact normally with ED S. I told them strongly that they could best support their brother by playing games, chatting, giving a hug, being normal. I also told them that they were not responsible in any way for ED S eating or health. Of course, they occasionally whispered something they noticed to me but mostly they leave all that stuff to mom and dad. It has been very important to talk to them (usually at bedtime) about stressful events, to warn them in advance of possible freak outs (and plan what they could do, usually iPad with headphones), to reassure them that mom and dad will sort things out (often faking it until we make it!)
  • Grandma love. Special relationship with one nana who he writes to. He can tell her anything and she will not tell us unless his life is in danger. She has read up and sometimes asks for general advice about what to say re the illness
  • Food; safe foods, safe amounts, dependable timing. This has really reduced the anxiety so that he mostly eats without problems. I, of course, have varied my recipies so that they are much more calorific than previously. He is recently asking for variety, different fruits, milk warm with spices and MASSIVE WIN first favourite chicken soup, now beef noodle soup! There is almost no pressure at mealtimes except for our expectations. Any and all distractions/comforts allowed so iPad, table in living room, no guests, timer 30 mins
  • Mom reading tons and passing on info as appropriate. E.g. terror at thoughts of doc visit calmed using techniques learned in ‘Freeing your child from anxiety’: telling little bro that being vegetarian is not safe in our family now we know we have genes and the nutrients are esp important to us, few weeks later ED S left note that he would eat chicken soup; passing on info piecemeal re EDs to reduce strong feeling of guilt/responsibility
  • Closing loopholes; searching and finding hidden food, checking for purging, banning all but fun exercise, not discussing food/calories etc
  • Activities and occupation. He is a very creative kid with lots of hobbies. At first we gave him an occupational therapy budget and told him that’s what it was. Now, he earns that budget by doing spring cleaning chores. He feels chuffed with that
  • No school. Just not happening so who cares? We have bigger thing to worry about.
  • Striving for our normal. Keeps the goal in sight.
  • Edit: Medical oversight was NOT NEGOTIABLE. But we did look for ways to make it less stressful. Once a week at pediatrician (very stressful) and we bought a blood pressure monitor and measured BP, heart and temperature at home and emailed results to pediatrician. She told us which measurements meant go to hospital NOW and she had the hospital briefed on the situation.

Those are just the highlights. I’ll probably thing of some others but I really curious to hear how other people have done and to learn some more tips and tricks.

With warm appreciation, as always,

D


__________________
Mother of 13yo son restricting but no body image issues; inpatient 6 wks Sept/Oct 2015 but lost weight! So emotionally destroyed they agreed to let him home to us. Stable but no progress. Medical hosp to kick start recovery for Feb 2016. Slowly and cautiously gaining weight at home and seeing signs of our real kid.

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.

Psycho_Mom

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Reply with quote  #2 
Hi,


"There is almost no pressure at mealtimes except for our expectations. "

You're doing great, obviously. I'm just confused as to why you might think what you're doing isn't LSUYE or Magic Plate or FBT? Not that it matters what you call it, of course.

A main concept of FBT IS that families will figure out what works for them.

Magic Plate is exactly what it sounds like you're doing: serving what your child needs.

LSUYE is the expectation and requirement that it is eaten.

IS there a conception that LSUYE or Magic Plate are confrontational or punitive or high-pressure, or involves encouraging or talking or telling the kid to eat? They can be I suppose, if that's what works. I always found that the less talking, the better. And the more calmness and compassion, the better.

Serving a meal and expecting that it is eaten is exactly, completely, what LSUYE is. 

Anyway as I say, I don't think it matters what one calls it, you're doing great! But if there's confusion about what was meant by LSUYE or Magic Plate--and they are for some, really hard concepts to grasp and implement, as yes, they do involve putting aside one's own emotions and staying calm and resolved--then let's work on a better explanation for the info page. Maybe it could include your list, which is an excellent list of things a family can do to expect full nutrition in a loving and supportive way.

best wishes,

__________________
D diagnosed with EDNOS May 2013 at age 15, refed at home Aug 2013, since then symptoms gradually lessened and we retaught her how to feed and care for herself, including individual therapy, family skills DBT class, SSRI medication and relapse-prevention strategies. Anxiety was pre-existing and I believe she was sporadically restricting since about age 9. She now eats and behaves like any normal older teen, and is enjoying school, friends, sports, music and thinking about the future.
deenl

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Reply with quote  #3 
I guess the main reason is that if he chooses not to eat it then there is nothing I can do. Absolutely nothing apart from heat the meal again and keep it on the table, keeping the calm expectations and empathy going.

And actually, nothing is the best thing to do. No reminders, no talking, often only hovering on the other side of the door and then sometimes he can still manage to find the courage to come and eat.

Our style is super dependent on his inner strength. The times where that fails, then the meal doesn't get eaten 'cause ain't nothin' we can do to help him out.

I think one of the things that make a difference is the fact that he knows and understands that he is dangerously underweight. In fact, I suspect that is what makes eating especially difficult; on the one hand he has this 'force' that won't let him eat and on the other side he knows he (was dying) is severely ill. Talk about being stuck between a rock and a hard place. Nothing more certain to ramp up anxiety in a massive way. He also is not really fat phobic but does balk at a lake of it floating on his soup!

It has really been a struggle to discover what works but the main thing is that we are getting there. In the beginning his body fat percentage was too low to measure. Now, it is very satisfying to see it go up although we have a long long way to go.

Warm wishes,
D

Edit: I do think it is very important that when you are at your wits end and don't know how to help your loved one that you remember there are still things under your control; your own behaviour, the way you show affection, the atmosphere in the house, putting occupations/distractions in the surroundings, just keep looking for any little thing you can do. It helps me as well as the rest of the family.

__________________
Mother of 13yo son restricting but no body image issues; inpatient 6 wks Sept/Oct 2015 but lost weight! So emotionally destroyed they agreed to let him home to us. Stable but no progress. Medical hosp to kick start recovery for Feb 2016. Slowly and cautiously gaining weight at home and seeing signs of our real kid.

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.

Tali97

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Reply with quote  #4 
My son was NG tube feed for months as when he entered hospital there was no way he could consume enough calories. At that point his stomach was just not working.
The first time he was tubed he vomited the tube and had blood flowing from his nose. But eventually he was tubed although it blocked or was vomited up often in the hospital. 

What worked after he slowly started eating again 
Always having plans a, b etc on hand. If something tasted odd it would be remade, if he could not handle a particular food then how about his food instead.(Foods were always safe) (He needed to save face on occasion.)
To have a dietician or psychologist involved in increasing the variety so the fight is not with the parents.(they are not demanding just making suggestions and keeping goals in mind)
His agreement that he needs to eat more
Him forgiving himself for being in the place where he is. 
Finding out that he has gastroparesis and food causes him constant nausea, vomiting and bloating. So not eating does help with this but is not a viable option.
Relaxation techniques when he is getting stressed, but these are not working very well.
The biggest is actually olanzapine which he finds clears his mind.      

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18 year old boy (Gluten Free/Dairy Free 2005)
 IP - March/April 2014.  ARFID.
 2015 - Gastroparisis
deenl

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Reply with quote  #5 

Hi Tali,

Thanks for the reply. My goodness, what a journey you have had! What does the GF/DF stand for by the way?

Quote:
Originally Posted by Tali97
Always having plans a, b etc on hand. If something tasted odd it would be remade, if he could not handle a particular food then how about his food instead.(Foods were always safe) (He needed to save face on occasion.)

This works well for us too. Sometimes we take a step too far and just have to go back to the normal. No blame, no shame.

Quote:
Originally Posted by Tali97
To have a dietician or psychologist involved in increasing the variety so the fight is not with the parents.(they are not demanding just making suggestions and keeping goals in mind)

At the moment he is driving the variety but it is happening which is great. I like this idea so I will keep it for future use.

Quote:
Originally Posted by Tali97
His agreement that he needs to eat more

We do have implicit agreement and, God love him, he tries but it is a snail's pace. But he's putting on weight and body fat% is creeping up. I do hope that after another few kilos we may see a bit more improvement.

Quote:
Originally Posted by Tali97
Him forgiving himself for being in the place where he is. 

Yep. Really important. I have a great trick for this. I explain something to his dad or little brother along the lines of "he can't help X symptom of the illness but it will pass or he can try Y and see if it helps" but in a place where ED son can 'accidently on purpose' hear the comments. Of course, I do feed him snippets of ED education directly but sometimes the indirect communication works best. We also email info, requests and compliments to him. He reads them when he feels able to. He is still very emotionally fragile, can't handle much talk about ED and the recent bubble thread did strike home with me.

Quote:
Originally Posted by Tali97
Relaxation techniques when he is getting stressed, but these are not working very well.

Ditto, alas.

Quote:
Originally Posted by Tali97
The biggest is actually olanzapine which he finds clears his mind.      

How great. Ous S has said that if he can't get better himself then it's not worth getting better. Ah, the logic of the starved brain. Sigh.

You and your son have done a really wonderful job plotting your recovery path. Hats off!

Wishing you continued progress,
D

__________________
Mother of 13yo son restricting but no body image issues; inpatient 6 wks Sept/Oct 2015 but lost weight! So emotionally destroyed they agreed to let him home to us. Stable but no progress. Medical hosp to kick start recovery for Feb 2016. Slowly and cautiously gaining weight at home and seeing signs of our real kid.

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.

Tali97

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Reply with quote  #6 
GF/DF - stands for gluten free (he is Celiac) dairy free (it causes inflammation in his large bowel. ) He is also soy free and vegetarian since he was 3.

The other thing to add is that you cannot back him into a corner as he will totally shut down. He will make progress if ask him you can we help you ? What can we do to help?  

The forgiving himself was a conversation with directly with him as he had a lot of guilt. He needed acknowledge how and why it had happened. So prevent it happening again, because if it happens again the only answer is a J tube, and the idea horrifies him.  


__________________
18 year old boy (Gluten Free/Dairy Free 2005)
 IP - March/April 2014.  ARFID.
 2015 - Gastroparisis
deenl

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Reply with quote  #7 
In reply to Psycho Mom,

I think there was/is also a difference in how our son reacted to us taking over. For many kids, there seems to be an element of relief under all the ED blather. So it kind of goes; Magic Plate, Ed freaks out, LSUYE, real kid kinda relieved and eventually eats. Rinse and repeat as necessary. In years to come real kid says how relieved they really were. (A summary like this almost makes it sound easy but the main thing is that EVENTUALLY the kid EATS)

This may be the case with our son but we haven't seen it. When we tried taking control, i.e. we decide all health and food issues and you just do it (all very supportive and lovingly) he just froze and couldn't do anything at all except curl up on the couch all day and not eat. My thoery was the old 'fight, flight or freeze' reaction was totally overwhelming in him.

Also, we were a couple of months doing the rounds of GP (nah, he's fine), psychologist (wait 2 weeks and then yes, I'm sorry but we do only do one appt per week, see you next week) and the week after he's committed for his own safety (lost 2 kgs in the 5 weeks IP) so by the time we found out about FBT and found this site and got him home he was really in a terrible place, physically, emotionally and psychologically. We had no margin of error and we couldn't afford to sit it out too long without eating. We had to muddle our way through.

Another thing we did do was see where he was compliant. He did, even under almost unbearable anxiety, comply with medical checks. So we arranged for him to go to the general hospital to kick start some weight gain. We got a good few good habits from that; I became the cook and gradually increased the calories in what he would eat, we got the meals down to 30-40 mins and he got the brain scan out of the way.

EDs are so rough because for many patients there is no 'manualised' treatment that will work. But where there's a will there's a way!

Warm wishes,
D

__________________
Mother of 13yo son restricting but no body image issues; inpatient 6 wks Sept/Oct 2015 but lost weight! So emotionally destroyed they agreed to let him home to us. Stable but no progress. Medical hosp to kick start recovery for Feb 2016. Slowly and cautiously gaining weight at home and seeing signs of our real kid.

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.

deenl

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Reply with quote  #8 
Wow, Tali, my admiration grows. What a collection of issues to deal with! Lucky for your poor son he obviously has a great mom.

D

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Mother of 13yo son restricting but no body image issues; inpatient 6 wks Sept/Oct 2015 but lost weight! So emotionally destroyed they agreed to let him home to us. Stable but no progress. Medical hosp to kick start recovery for Feb 2016. Slowly and cautiously gaining weight at home and seeing signs of our real kid.

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.

mjkz

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Reply with quote  #9 
I can relate to this because my daughter is one that we have had to find other ways of treating because LSUYE and Magic Plate were just not a viable option.  Things that have helped:

*Finding things she does care about and using those things to keep her eating. 

*Keep the rules and expectations consistent.  I treat just like I would any other kid and I do not accept bad behavior when she does eat or is anxious about eating.  I know many on here think that getting the food in is the most important thing and ignoring the behavior but I have found that consistency is very important.  The kids are going to have to learn to emotionally regulate even at high stress times and I find it much easier to keep the expectations around behavior the same.

*Realize that I cannot keep her from suffering and I have to let her struggle as hard as it is to see.

*Not be afraid to use whatever means necessary to keep her alive.  My daughter spent over six months medicated and being tube fed because her weight was so low and she was medically unstable.

*Create a life worth living and also have a life myself.  I think it is important to show them life can be fun and they can be out there having fun with us if they eat.

*My daughter can get very comfortable in the hospital so I do not nor have I ever spent a lot of time there with her once it became clear to everyone involved that it was not beneficial.  She used to see the hospital as a safe place and now she much prefers being home and around people.

*She is not me and I am not her.  I do not eat the way she does.  I take care of me the way I need to and always have.  She knows that she has to eat differently than other people and that dieting is not a way of life for her.  I do not diet, etc. but I also do not eat like she does.   It has really helped cut down on her getting upset or jealous because someone else eats in a different way than what she eats.

*Choice.  I know an eating disorder is not a choice but at some point choice does play a part.  My daughter has learned the hard way that trying to avoid eating a meal is a choice that will take her on a downward spiral.  She has had to learn the things she has a choice in and how to avoid making bad choices that are going to lead to relapse.  Especially with the older teens/YA choice does play a role and also motivation. You have to have them buy in at some point even if it is not a choice for recovery but rather to choose to avoid a bad outcome.  I also have always given her some choice in food too.  Do you want an apple or a banana kind of choice.

*Never give up.  We have been at this many years and it is still a battle.  I think for my daughter it will be a battle she lives with for her entire life.  My hope for her is that she recognizes the thoughts are there but she does not have to act on them.  She can still recover even if she has thoughts.  For her, the battle is not with having the thoughts but with how she reacts to them and how she chooses to fight them; hopefully at some point it will be just a tacit recognition of still having the thoughts but doing what is healthy for her so it is not so much of a fight.

The great thing about this site for support and treatment in general is that you take what works for you and your loved one and run with it while the things that don't work-you leave them and don't beat yourself up for not being successful with everything.
trusttheprocessUSA

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Reply with quote  #10 
My son stopped eating and I know how terrifying it is. Nothing I did would get him to eat...he was dying and I was terrified. When we got him the right care he was put on Zyprexa (olanzapine) and for him that drug quieted down the voice in his head and he was able to have the NG tube without any struggle. After a few days he was able to eat. He stayed on the medication for months while he was re-fed and as he began to gain and grow - this drug help save his life.
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Son diagnosed @ 12.5 yrs old with Severe RAN 2/11 - currently in remission. Co-morbids - anxiety, Active restriction for 3 months. He stopped eating completely 2x. He needed immediate, aggressive treatment from a provider who specialized in eating disorders, adolescents and males. We got that at Kartini Clinic. WR since 5/11 continues to grow...
Goingtobeatthis_AUS

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Reply with quote  #11 
Deenl - this is amazing! What it critical is that parents know their child best and what will work. I now work with families providing peer support and will add your list to the options for families as we definitely see the families where for various reasons the very hard core 'eating is non negotiable' approach (which was my approach and worked) is not working, the families feel completely at a loss etc. I really think the key elements for judging the success of an approach is the parent being in control, the child feeling contained, the weight going on and Ed behaviours being challenged. The different roads to that are all valid. Congratulations on being so creative and working out the best way for your child!
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Belinda Caldwell FEAST Executive Director. D 21 now well into recovery after developing AN in 2011. Inpatient 5 weeks, FBT and then just lots of time, love and vigilance.
Sotired

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Reply with quote  #12 
This is one of the many things I struggle with with 'FBT is the only way' proponents.a very reputable scientist who came over to NZ to give a talk on eating disorders was very clear that FBT works for only 50%of people who do it.when something works for you and your family it's tempting I imagine to talk on and on about how it is the only way....thereby making those of us who have children who were completely unresponsive to FBT feel like complete and utter failures.EVEN THOUGH SCIENTISTS THEMSELVES ADMIT THIS APPROACH HAS A 50% FAILURE RATE.
I didn't deal so much with plate throwing-I dealt with a mouth that would not open for food.or water.or swallowing her own spit.
I could sit at the table until the cows came home,my d removed herself from the table,off to the couch to 'sleep'.
I could take away everything,she didn't care.
Plate throwing?id take that over my girl slitting her wrist in front of her siblings any day.
And the GUILT.oh my god,the GUILT.
If I had just tried harder,if I had never had to go to the toilet,take her brother to school,try and split myself three different ways...I'm sorry,but people who are doing this with just one child who have no other special needs to account for in the family do have it easier.the amount of times I was told if my d had cancer I would just drop my other two kids(like they suddenly didn't matter) and do everything for my ed d...well I tried that and it made everything worse.
What works in this situation with a son or daughter who won't cooperate in any way ,shape or form?
HOSPITAL.over and over again.we had 24 hour turn arounds.that means that in 24 hours,back at the hospital, not that there was any change in ds behaviour.
An understanding GP.
Residential treatment.
An acceptance that for us stopping life until she ate simply punished her and made the rest of our lives even crappier.
That if we wanted her to want to live we had to show her that life was worth living.otherwise she was quite happy being miserable.
We had to accept our path was littered with mistakes from professionals and we were left picking up the pieces...or getting our d sewn up at a&e again.
That we made many mistakes and we had to pick up the pieces and hide the sharps better,
That our case was particularly hard and other people needed to help us or lead us to people that could.
When FBT doesn't work you are treated like you are the failure.if you suffer from self esteem issues, no matter how strong you are,that's gonna sting.
We are struggling on our path right now but I don't feel like a failure anymore.we are working through things and it's my ds job right now to make some effort to survive til we can get more help.in truth I cannot look after her forever.im doing all I can to help her but that is all I can do.
I wish for a return to the way the hospital used to do things-in our situation it would have been better.even if it was something that was just done for some cases.this one size fits all approach with FBT makes me angry.it doesn't fit everyone and my kid may die because of that.
So this isn't the answer you were probably hoping for deenl,but that's what worked for us.hospital and residential.oh for the good old days...

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Sotired42
Penny31

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Reply with quote  #13 
Definitely a super-resistor here. She does choose to eat sometimes. But it's entirely her by own volition, and if she chooses not to eat (she herself claims it's a choice, rather than a question of finding eating difficult) then there's nothing on earth that will move her. Same with going to school (and this was the straight A* student who was once proud of her perfect attendance record). When she's refusing to eat, I normally can't get her anywhere near the dinner table - she just hides in bed under her duvet. Occasionally taking food up to her works, but sometimes it just makes it worse. She's a super-resistor when it comes to treatment too. Yes, we did get her into hospital 'voluntarily', but that was only because invoking the Mental Health Act would have involved an ambulance, and she saw coming in the car with us as the lesser of two evils. Plus she was in a strangely OK sort of mood that day. But normally she either gives the silent treatment to therapists, or refuses to attend appointments. In hospital she did talk to a therapist, but only to say 'don't know, don't care' all the time. She can't or won't talk about her feelings (she claimed this morning to have none, but then when I asked her if she felt numb then, she said no). We really don't have a clue what to do. She may well need medication, but I'm fairly certain she'd refuse that too. 
I know we're lucky in a way, as she's not actually lost that much weight yet, and her self-harm, while not superficial, hasn't put her in real danger. And we do get lots of glimpses of the real child underneath this all. But something is going to have to shift, as this really can't go on.
Sorry, end of venting!


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14 year-old D diagnosed with AN in March 2016. Episodes of self-harming, anxiety, severe depression. Waiting for a CAMHS assessment to see if there's an additional diagnosis. 
Torie

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Reply with quote  #14 

Quote:
Originally Posted by Sotired
When FBT doesn't work you are treated like you are the failure.


It makes me so sad to read that.

It's hard to thread the needle - to bolster confidence and give hope to those new to the game so that they can face the next day, the next meal, the next bite ... sucks so much that parents are the ones on the front lines when we're the ones most tortured by administering the mental health equivalent of chemotherapy to our suffering kids ... how to keep their hope and spirits up in the face of this without implying that failure is failure of the patient or caregiver when really it is failure of the treatment.

We urge each other on: "Keep going! You can do this!" because that's what we needed to hear to keep putting one foot in front of the other ... but what of the cases where you really can't do this because FBT won't work for your child? 

I don't know the answer, Sotired. But 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 
hyacinth

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Reply with quote  #15 
I also struggle sometimes with the feeling that other parents are managing more successfully, even though I know it is not helpful to make comparisons. And sometimes it feels that parents who have successfully refed at home with very short hospital admissions do not fully comprehend how different the situation can be for different families.  I found this blog below really interesting, especially this discussion of the complexity of anorexia from 2013 (with readers comments that include Charlotte). Obviously, this disease is hell on earth for everyone, but there are some particularly horrendous versions of hell that need different treatment approaches.

In my d's case, I can feel even more guilty because she is an only child and so I do have the ability to put all my time and energy into helping her. But the opportunity for FBT has been limited to date, because she was in hospital for self-harm/ suicide attempts when the anorexia fully manifested itself. After that she came home briefly, but some severe self-harm and inability to eat meant she was moved quickly to an eating disorder unit. The anxiety and suicidal ideation were so strong that she stopped eating and was weight restored on the tube over 3 months. But even then every single step (drinking replacement drinks, eating food in the unit, eating food with the family) has been incredibly hard for her, accompanied by self-harm and suicidal thinking and so she has been inpatient for over 10 months. I even asked her whether we should have tried a different approach that avoided hospital, and she said that she didn't really think there was any other option that would have worked. And whilst having many frustrations, I am also grateful for the help and expertise of the doctors and nurses along the way.


http://www.scienceofeds.org/2013/06/11/beyond-simple-solutions-the-need-for-complex-ideas-in-anorexia-nervosa/
ooKoo

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Reply with quote  #16 
I too have a super-resistor.  My D will stop eating until she literally drops.  Luckily, we have never let her get that far, but we have been very close.  FBT was a disaster for us.  She didn't engage at all. It was super stressful and actually made things worse.  We tried for a few months with it, and then she withdrew herself from their care.  My H and I went along without her for a number of times, which was useful for us.

My D has just been put on the waiting list for CBT, which she hasn't had before.  It will be interesting to see if that helps at all. (My H took her to the last appointment, and it didnt occur to him to ask how long we will have to wait for the CBT [rolleyes] - but hope it is soon.  I feel another crisis rumbling around here and I know how a crisis rolls with my super-resistor. *sigh*

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UK - South East

17.5 yo D

Dx AN Feb 2015 (Aged 15). Pre-existing low self-esteen and high anxiety. 

2015: 3 x medical hospital admissions. 1 month in IP which she self discharged from [eek].
2016: 3 x hospital admissions.
2017: Currently attending CAMHS CBT. WR, at college, living life to the max.

On particularly rough days when I am sure I can't possibly endure, I like to remind myself that my track record for getting through bad days so far is 100% and that's pretty good. [Author Unknown]
Sadmom

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Reply with quote  #17 
Personally, I think it is helpful for other parents to know that Magic Plate and LSUYE do not always work, that's right do not work for some of our kids. We are not worse parents, or less caring parents because these evidenced-based methods failed. We are not failures. 

I had periods when I could not come near this site because other people's kids were getting well while mine was not. Other people had good professional help, when we have only had damaging crap, and other people's kids sat down and ate what was put in front of them, while mine did not. Other people could use leverage on their kids to get them to comply, but that just made our daughter run away from home and not not speak to me for many, many months. Leverage failed. Big time.

It is very hard when methods that work for other people do not work for your own child. Sometimes the co-morbids or personality types of different children make it impossible. It's just reality. I accept reality now.

I know that college contracts, contracts in general, which are very effective for other kids, do not work for mine. I know that some sort of tough love works for others, but not for mine. I know that other people have withheld tuition, cell phones and everything else, and that worked to push their kids into a firmer recovery.

None of that worked here. What has worked a bit? Time. Distance. Supporting her (emotionally, and yes, financially too), paying her tuition, showing her that there is a life worth living, accepting a lot of things about her choices that I am not fond of. It is her life. Not mine This illness is not a choice, of course, but (non-compliant) YA or adults have to take some control over their own destinies. 

I can no longer give up my whole life entirely for my D. I have a life, of sorts, now. Not what I envisioned, but I am carving out something, and I cannot use every last bit of emotional or financial resource I have for my daughter. Some of us can. Some of us can't and that is also the reality. 

We all love our children. They, and all of us, have been dealt a very cruel hand, but unfortunately, there is no one sure-true method that works to get our kids well. I am glad we can discuss this truth openly and honestly.

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Sadmom
Juno

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Reply with quote  #18 
Thank you for starting this thread deeni.  Your list of accommodations is extensive and helpful. Like PsychoMom, I don't see what you're doing as separate from LSUYE.  It is, though, a kinder, gentler version than you had before and it seems to be working.

If I had to do it all over again, I would also choose this kinder, gentler version.  When no providers could help me put our d's behavior in perspective, I freaked out. She was tiny then so it was possible for me to pick her room lock, pick her up, and carry her down the stairs to the dinner table. Sometimes she would run away again and again and we would repeat the whole process. It felt like I was fighting a monster for control of my child and I was in full battle mode. She was not as resistant as you experienced; she did eat but it took all of my energy and a huge toll on our family. My husband, son and I are still recovering.

It took a while for me to discover the phrase "how can I help you?" when she was shutting down or lashing out. Slowly, and with the help of two treatment programs and a therapist, we have learned to work alongside her to lessen her anxiety and make it possible for her to eat every meal. This feels so different from negotiating with an out-of-control eating disordered voice.  

So glad you've found things that work and hope you keep on sharing with the rest of us.

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Mom of a younger outpatient
StepbyStep

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Posts: 25
Reply with quote  #19 
Dear Deenl,

I also say thank for posting this. My d is in a relapse, been ongoing now since Sept/ Oct last year. It feels like 10 years. This time has been a lot worse and she lost a lot more weight. She is 17 in a couple of days time and has a strong character without an ED. I have been fluctuating between putting my foot down, showing fristration and giving orders to taking the foot off the throttle, watching over her and guiding but not forcing. Mostly it has been that over the last 6 weeks. She seems to have responded to that approach better and has slowly / very slowly/ been weight gaining. We still have a long way to go and our Psych and medical support has been patchy and at times not very helpful.

I got crabby today as I want her to have fruit smoothies with some ice cream and milk, calcium and fruit and calories. For about two weeks she would have three a week. Now she is totally refusing saying, " I don't even like dairy, I won't have it." I know she has loved milkshakes, ice cream etc in the past so I know this is ED talk. Now frustrated and panicking a bit about calcium levels and bone density in later life.

It's all so exhausting. Thank you for sharing that a gentle approach can make a difference, I have to keep trusting that but also keep pushing if I feel she is incapable of making the right choices with regard to overall health. You are doing a fantastic job. Very well done. Keep at it. We are all rooting for you and your son.






deenl

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Reply with quote  #20 
Hi mjkz,

Quote:
Originally Posted by mjkz
Things that have helped:

*Finding things she does care about and using those things to keep her eating. 

*Keep the rules and expectations consistent.

*Realize that I cannot keep her from suffering and I have to let her struggle as hard as it is to see.

*Not be afraid to use whatever means necessary to keep her alive. 

*Create a life worth living and also have a life myself. 

*My daughter can get very comfortable in the hospital so I do not nor have I ever spent a lot of time there

*She is not me and I am not her.  I do not eat the way she does. 

*Choice.  I know an eating disorder is not a choice but at some point choice does play a part. 

*Never give up. 

The great thing about this site for support and treatment in general is that you take what works for you and your loved one and run with it while the things that don't work-you leave them and don't beat yourself up for not being successful with everything.


Thanks for the really detailed list of what has worked for you. What strikes me is that so many of the things that work for you and your family are not at all easy or in parenting fasion these days. And yet, these are the things that are/have worked for your family. Your daughter is still alive and you do not give up hope for the future. This is what it is all about.

I am so appreciative that you have given such a comprehensive reply. These are all issues that we need to think about as we try to navigate this journey. Definitely food for thought!!

Warm wishes,
D

__________________
Mother of 13yo son restricting but no body image issues; inpatient 6 wks Sept/Oct 2015 but lost weight! So emotionally destroyed they agreed to let him home to us. Stable but no progress. Medical hosp to kick start recovery for Feb 2016. Slowly and cautiously gaining weight at home and seeing signs of our real kid.

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.

deenl

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Posts: 698
Reply with quote  #21 
Hi trusttheprocess,

Quote:
Originally Posted by trusttheprocessUSA
When we got him the right care he was put on Zyprexa (olanzapine) and for him that drug quieted down the voice in his head and he was able to have the NG tube without any struggle. After a few days he was able to eat. He stayed on the medication for months while he was re-fed and as he began to gain and grow - this drug help save his life.


This would definitely be my drug of choice and after 3 psychiatrists, I have found someone who is willing to prescribe it! But S will not take it. Bummer. Maybe in the future.

It is great to hear of successful treatments and very useful for anyone else reading to know this.

Thanks for posting,
D

__________________
Mother of 13yo son restricting but no body image issues; inpatient 6 wks Sept/Oct 2015 but lost weight! So emotionally destroyed they agreed to let him home to us. Stable but no progress. Medical hosp to kick start recovery for Feb 2016. Slowly and cautiously gaining weight at home and seeing signs of our real kid.

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.

deenl

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Posts: 698
Reply with quote  #22 
Hi Goingtobeatthis_AUS,

Quote:
Originally Posted by Goingtobeatthis_AUS
What it critical is that parents know their child best and what will work.

Yes, although I do think it takes a while and a very steep learning curve before you feel confident enough to make a stand. That or having no other choice.


Quote:
Originally Posted by Goingtobeatthis_AUS
I now work with families providing peer support and will add your list to the options for families as we definitely see the families where for various reasons the very hard core 'eating is non negotiable' approach (which was my approach and worked) is not working, the families feel completely at a loss etc.

What a cool job! I am sure it is very emotional at times but there must be very satisfying times too. It would be lovely to collate the tips from all the families on this thread

Quote:
Originally Posted by Goingtobeatthis_AUS
The different roads to that are all valid.

So, so true. Ya just gotta keep searching for the right fit.

Thanks for the reply,
D

__________________
Mother of 13yo son restricting but no body image issues; inpatient 6 wks Sept/Oct 2015 but lost weight! So emotionally destroyed they agreed to let him home to us. Stable but no progress. Medical hosp to kick start recovery for Feb 2016. Slowly and cautiously gaining weight at home and seeing signs of our real kid.

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.

deenl

Caregiver
Registered:
Posts: 698
Reply with quote  #23 
Hi sotired,

Quote:
Originally Posted by Sotired
I dealt with a mouth that would not open for food.or water.or swallowing her own spit. I could sit at the table until the cows came home,my d removed herself from the table,off to the couch to 'sleep'. I could take away everything,she didn't care.

Exactly. This is exactly why I started this tread. There is a subset of kids like this. And all us parents scream 'Now what?'

Quote:
Originally Posted by Sotired
What works in this situation with a son or daughter who won't cooperate in any way ,shape or form? HOSPITAL.over and over again.we had 24 hour turn arounds.that means that in 24 hours,back at the hospital, not that there was any change in ds behaviour.

I'm so glad you wrote such a detailed reply. Other parents in this situation need options.

Quote:
Originally Posted by Sotired
An understanding GP.

We have a similar hero. Thank God.

Quote:
Originally Posted by Sotired
Residential treatment.

Good to know. For us it was a disaster but that was more a series of unfortunate events (still dealing with the fallout)

Quote:
Originally Posted by Sotired
That if we wanted her to want to live we had to show her that life was worth living.otherwise she was quite happy being miserable.

Exactly, again. For some it is very much carrot and almost no stick.

Quote:
Originally Posted by Sotired
We are struggling on our path right now but I don't feel like a failure anymore.we are working through things and it's my ds job right now to make some effort to survive til we can get more help

I am glad you are coming to terms with your incredibly difficult path. I too pray that your daughter stabilises and that a few more hero doctors cross your path.

Quote:
Originally Posted by Sotired
So this isn't the answer you were probably hoping for deenl,but that's what worked for us.

The answer I am always looking for is reality; the good, the bad and the ugly. Let's support each other through the various hells and celebrate as one by one we make it through.

Thanks again for the post and hang in there,
D

__________________
Mother of 13yo son restricting but no body image issues; inpatient 6 wks Sept/Oct 2015 but lost weight! So emotionally destroyed they agreed to let him home to us. Stable but no progress. Medical hosp to kick start recovery for Feb 2016. Slowly and cautiously gaining weight at home and seeing signs of our real kid.

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.

deenl

Caregiver
Registered:
Posts: 698
Reply with quote  #24 
Hey swash,

Thanks for replying. I have been struck many times by the similarities between our kids. I truly hope that some of the replies here give you ideas to try out.

Quote:
Originally Posted by swash
In hospital she did talk to a therapist, but only to say 'don't know, don't care' all the time. She can't or won't talk about her feelings (she claimed this morning to have none, but then when I asked her if she felt numb then, she said no). We really don't have a clue what to do. She may well need medication, but I'm fairly certain she'd refuse that too.


Our standard reply was 'Doesn't matter' to flipping everything. I do notice that our son has great difficulty identifying and talking about emotions. He, too, refuses medication. Such a bummer.

Hang in there. I know you will find something that will help.

Warm wishes,
D

__________________
Mother of 13yo son restricting but no body image issues; inpatient 6 wks Sept/Oct 2015 but lost weight! So emotionally destroyed they agreed to let him home to us. Stable but no progress. Medical hosp to kick start recovery for Feb 2016. Slowly and cautiously gaining weight at home and seeing signs of our real kid.

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.

deenl

Caregiver
Registered:
Posts: 698
Reply with quote  #25 
Hi hyacinth,

Quote:
Originally Posted by hyacinth
Obviously, this disease is hell on earth for everyone, but there are some particularly horrendous versions of hell that need different treatment approaches.

Yes and I am very glad that we are all discussing what has helped and are able to give each other some emotional support no matter what path our kids are on.

Quote:
Originally Posted by hyacinth
I even asked her whether we should have tried a different approach that avoided hospital, and she said that she didn't really think there was any other option that would have worked. And whilst having many frustrations, I am also grateful for the help and expertise of the doctors and nurses along the way.

Again, you have found what works for you. I think it is really great that you have some conversation about it. For months, my son barely spoke to me at all and then it was in the quietest whisper. I hated that voice and am so boosted by the return of his normal voice.



This is great. Thanks for posting the link.

Thanks for taking the time to reply and wishing you and your d continued progress,
D

__________________
Mother of 13yo son restricting but no body image issues; inpatient 6 wks Sept/Oct 2015 but lost weight! So emotionally destroyed they agreed to let him home to us. Stable but no progress. Medical hosp to kick start recovery for Feb 2016. Slowly and cautiously gaining weight at home and seeing signs of our real kid.

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.

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