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bluebooks
I've not posted for a very long time.  Here is an update and then a question:

My son, now almost 20, was diagnosed with anorexia at age 11. He was weight-restored by about age 13.  He gained a good amount of weight and his mental state improved corresponding with distance from original diagnosis and increased weight.  Has has been healthy and well for many years.  

Two years ago he left on a two-year mission.  We communicate with him only weekly via email.  Because of the conditions where he lives, he lost about 50 lbs during his first year.  He had a good 60 pound buffer before he left (which is part of the reason we were comfortable with him going).  So he is still holding at a reasonable weight that is consistent with his long-tracked weight patterns.  We all recognized the potential problems of the weight loss on his brain and body and once he acknowledged some increasing OCD and anxiety, he was on board to ensure that there was no additional weight loss.  

He is not in a situation where he can be regularly weighed by a doctor or specialist.  So, we've had him weigh himself.  He checks in with me weekly about his current weight.  Thus far, he has been able to maintain his weight for the most part.  There was a period of time where he lost access to his scale and his assumption was that he was gaining weight rather than losing, which of course led to additional weight loss.  We nipped that problem right away and got him access to a scale again and then he got his weight right back up to the agreed-upon goal.  He is thriving and besides some OCD stuff which he is pretty good at recognizing, I'm not really worried about him. 

He returns home this summer and then heads off to college.  I've been pleased with the pattern that we've set up where he is checking his own weight (which keeps him from assuming that he is gaining huge amounts of weight).  My concern is that for so many years we were told to not let him see his own weight.  It seems to be working for him, though.  Is there a downside to letting him weigh himself that I'm not considering?
Wendy http://nourishingmyson.blogspot.com
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Trytrytry
If something is working, why stop.
For some people seeing their weight is anxiety and symptom provoking.

But there is no one treatment model/rule.
Whatever is working for your son, I would continue. I am not sure how reliable he is at reporting but at the end of the day mum's know best. You know your son, you have seen his behaviour, you have been through the good and the bad and sent him out into the world - well done.

Regarding future decisions, he is an adult now and the dynamic changes but always trust your gut instinct and many on here I imagine would agree to trust yourself and act sooner rather than later if you feel things are headed in the wrong direction. You know this is a high relapsing illness so I would be watching him closely with a big weight loss. I know he had a buffer, but a dramatic loss from whatever weight (even if it was a high weight) can cause relapse, like they are addicted to that hungry feeling.

I am not saying that your son is unwell, but keep a close eye, don't necessarily believe ed makes our kids lie better than anyone. And whatever is working or has worked in the past, keep on doing.
I want a realistic dr and team, not someone who says what I want to hear and not a 'touchy feely nice' dr that doesn't have success.
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OneToughMomma
Dear bluebooks,

Wow, what a journey you have had! Congratulations on all the progress your son has made.

You've been at this for a long time, you're a good mum, and your son is a young adult living in challenging conditions.  I don't think any of us could pass judgement on the decisions you have made. It's really up to you to decide together what will work for him.

That said, I do think you've made the right decision. My d is about the same age and living away from home.  She goes to a gp to have her weight checked.  She makes the appointments, knows the weight, and discusses it with me. (Dr emails me as well, in case of relapse in future and d being unable to accurately report.) 

As far as I can see, our recovered YA's live in a world where people usually know their weight.  They are transitioning into full adulthood where they will be completely responsible for their health.  And some of our kids will be safer and happier knowing their 'numbers'. My d will need to know for at least a few years, I imagine.  And very soon it will be her decision alone.

You are doing great!

xoOTM
D in and out of EDNOS since age 8. dx RAN 2013. WR Aug '14. Graduated FBT June 2015 at 18 yrs old. [thumb]
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quillingbee
My son is 20 yrs old and has been weighing himself for the past year while away at college. He is weight restored and eating all on his own. The scale helps him. If he sees his weight going down he adjusts to get it back up. He weighs a few pounds more than when he left for college. Not much but at least the scale has helped him maintain control.

There was a time when the scale was completely off limits to him and we were leery of allowing that back into his life but it has turned out to be his friend at this point.

So yes, I think if it works then it's ok.

Bee
Bee
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Sotired
You know your own situation best but I do have two questions.a 50 pound weight loss is to my mind far too much,how can he keep track of his heart health ?we look on these weights as buffers,but to a heart,it's necessary weight and the heart kidneys and lungs rely on it.a sudden weight loss of so much will have impacted his body on the inside,not just the outside.it will affect his lying to standing heart rate.he will be more inclined to faint.
My second question is that a dramatic weight loss like this will also affect how his brain functions.this means he may be being less than truthful about his actual weight loss.the symptomatic lying is part and parcel of this particular illness.
My belief is that whilst people can be in remission,it can still be re activated at any time,particularly when our children live and work in places where starvation may be rife due to famine or war.i would caution anyone who has suffered from an eating disorder to do missions as its all too easy for them to empathise too greatly and accidentally trigger themselves again.
If it was me-and I know I am not you-I would call him home and find a way of doing Gods work in his local community whilst he regains the weight.
Now that's just my ten cents worth,but I will repeat-the body doesn't look at that weight as a buffer.it needs it.he needs checking over and a much safer diet plan than he has created for himself.there are substantial health risks.particularly if he damaged his heart whilst in the throes of ed the first go round.
Good luck in whatever you decide,
Sotired42
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bluebooks
That 50 pound weight loss did cause me all sorts of concern.  This happened last summer and into fall.  He started at around 235 lbs and dropped to 185 over about seven months (he is 5'11" for reference).  We were on the brink of bringing him home or creating a very serious intervention to ensure that it stopped. The stopping point of his weight loss was us outlining all the evidence that we were seeing of accompanying mental decline and insisting that the weight loss stop at that moment.  He acknowledge the problem and agreed that it had to stop and that was that.  I do fret a lot about the potential harm done to his body with any weight loss.  He hadn't had heart issues the first time and I hope this weight loss didn't create any other problems.  

I acknowledge that he could be lying about his weight loss, but I don't think he is.  He sends home a picture every week and I scrutinize them for the way his pants fit, etc.  He was never one to lie even when he was at his worst with the anorexia.  

I'm grateful to hear that this can be a successful new "normal" for him as an adult.  We'll proceed forward carefully.  He comes home in four months so I think he can finish his mission successfully.  And then we'll move to the new challenges of college and independent life.

Thank you all for your thoughtful comments!


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Colleen
Hi bluebooks,

How nice to see you back here!

I'm going to vote thumbs-up for the scale.  At some point, for some of our kids, a scale can be a useful tool.  A scale is neither good nor bad; it's just an instrument.  My d at 24 uses a scale to track her weight also.  She doesn't weigh herself obsessively, but checks herself about once/week to make sure that she is staying on track.  Once she starts to slide, no scale or meal plan or any kind of 'tool' helps her arrest the slide.  So if she can stay on top of it, she can keep herself healthy.  A scale helps her do that now.

I'm going to add my concerns to the 50-lb weight loss.  Often people who are overweight suffer from ED for a long time until someone notices--because weight is not an accurate gauge of someone's mental health.  Which means--he could be absolutely FINE (and I hope he is), or he could have been restricting all this time and the disorder can be quite entrenched (I hope NOT!).  If you think he is going to maintain his current weight using the scale or any other tool, and if he seems to be doing all right, state-wise, then waiting till you see him in a few months might be just fine.  Scales can be really useful!

Let us know how it goes when he returns!!  You've done a wonderful job.
Colleen in the great Pacific Northwest, USA

"What some call health, if purchased by perpetual anxiety about diet, isn't much better than tedious disease."
Alexander Pope, 1688-1744
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Psycho_Mom
Hi,
I find your son's story really encouraging. He is able to travel to challenging places, recognize when he's having trouble, eat more when he knows he needs to, and keep you as his health advisor and anchor because he recognizes that necessity. That is a wow and, I think, the goal we're working towards with our d as well.

I also imagine that if my d lost over a fifth of her body weight I would FREAK OUT with a hundred capital F's. So I am not sure about that, but it sounds like you are doing the very best you can. And parenting does seem to involve a LOT of traumatic times when you can do nothing.

Our d has been wr for 2 1/2 years and is nearly in remission (everything normal except tends to lose weight if not nagged.....) We check her weight every week. The reason it is not recommended early in treatment is probably because it can cause massive anxiety. We experienced massive anxiety, I can tell you. But we got through it, and now each week we just do it, although neither of us likes it. And it helps her stay on track, or know without any way of discounting it (as she can do with what her mother says....) that she needs to eat more.

It does bother me that we try so hard to get d back to normal behaviors and normal life, and I think weighing yourself weekly isn't that normal. I wish we didn't have to do it. I wish she could just eat and forget about the stupid number. I wish *I* could forget about the stupid number.

And if wishes were horses....

It sounds like things are working for your son. Bravo, and thank you for posting. It helps those of us not that far along, to get a glimpse of a bright future.

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.
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