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

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mamabear
On so many threads, exercise is in the discussion. In so many instances it seems that CAMHS or the " team" etc. actually support exercise as a form of anxiety REDUCTION in kids who are NOT weight restored and in a solid recovery path.

I just have to say this....I don't get it. It blows my mind.

When my d was sick as heck, the exercise was off the chain. All night long, in the bathroom, any time you left her alone, and she would not sit down.Ever.

In the hospital (27 days) they put her in a yoga class. ALL D did was ask when the yoga class was, how long until yoga etc. She made it a massive core crunching Olympic cardio event. I put the cabbash to yoga- not the doctors or nurses- ME.

When we took her home they said she could resume gym at school. The kid had gained a whipping 8pounds of the 30 she needed to. We did not put her in gym OR in recess. She helped the art teacher instead.

At first we set a timer for 15 minutes so D could hit around a balloon. We had been brainwashed that she needed some outlet for this anxiety. Watching her hit around that balloon was torture. She would jump as high as she could and hit it as hard as she could and grunt and sweat and cry. It was literally insane. She also would wear a blue fleece jacket...so we took the jacket away (WAR) and then within a few days we thought " what in the hell are we doing? This is torture for her." So we stopped ALL exercise. She could not get the mail or even go upstairs unless essential. If we caught exercise she got a replacement of ensure. We slept with her for over a year.

Months later she told us how relieved she was. She told is her joints ached all of the time and how much she hated doing what the voice in her head made her do.

Now four years after diagnosis, my D wants really nothing to do with exercise. She plays softball and we play tennis and go for walks...but that's about it. The kid who begged me to join cross country now says " I hate running."

It was ALL ED.

Now it took us as parents about a week to figure out that this allowing exercise thing was completely counterproductive. It was obvious it was controlling her very life. Bones, muscles, organs, the heart being stressed and strained and damaged more every day.....

Why can't treatment teams and facilities figure this out? I do not understand why this is even an issue! Like I said on another thread- you don't allow an alcoholic a drink 3times a week.

Persistent, consistent vigilance!
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Amoma
I remember your girl suffered tremendously from exercise compulsion that sometimes can be a feature of this illness. And well said....

My D did not. But even so, we treated with providers that stopped ALL MOVEMENT during refeeding. She could not even kick a ball in the yard, walk around the block. Period. No recess, no PE, nada.
It was hard as heck with a 10 yr old, and we didn't even have that compulsion. But she was an athlete. Her coach visited her in the hospital and told her to focus on health. He was the only non family member to visit. We continued the difficult ban on activity and movement until refeeding was done. It was so hard but I have ZERO regrets. We were able to get 30 lbs back on her in 13 weeks. And that is when the real recovery began to unfold like a fog. Rapid and aggressive treatment focusing first on complete nutritional rehabilitation helped us tremendously. It was not until many months later that we returned to activity slowly....

Have the courage to say no to any and all movement during refeeding. Find support here.,
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IdgieThreadgood7USA
Mamabear, I think you really nailed it. When Ed took over my daughters life she had been an elite athlete. Ed turbines her accomplishments in to sheer compulsive torture she seemed so relieved. Guilty and relieved. Ed behaviors drive this illness. Ed behaviors must be completely interrupted. You cannot go back in time to before Ed appeared. You have to move forward.
Some people can go on to have activities driven by fun and social interactions but they ARE vunerable to perfectionism and compulsion. They need supervision and hopefully eventually insight into their feeling driven activity.
You are a wise one mamabear.
"Sometimes you just have to be your own hero"
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mamabear
I would really truly love to hear from someone who works in the Ed world....why not stop exercise? Why? Because it is hard? Because the kid WILL freak out? Why is there this mindset that it is best to sllloooowwwlllyyy adress eating disordered behaviors? The anxiety is NOT RELIEVED by the behavior- the behavior feeds the anxiety cycle.

Sorry to sound harsh or conceited- but it does not take a phd to understand this. It is so basic to me. It is no different than being told your kid needs to " want" to get better. Wrong. Being told not to push fear foods- wrong. Being told that there must be a past trauma- wrong. Being told your kid should be involved in the buying or preparing of the food- wrong....

I was just at Dachau in Germany. Those victims were starved and WORKED to death by the Nazis through physical exertion. When the body is malnourished and trying to heal- it makes NO sense to allow exercise- even if the person doesn't have an exercise compulsion.
Persistent, consistent vigilance!
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Psycho_Mom
Hi,
Our d was also "prescribed" jogging 3x a week for 15 minutes fairly early in refeeding, because she was doing so well (she was gaining 1-2 pounds a week and her period came back before wr.)

It seemed OK, she'd never had any observable exercise compulsion, and she'd always really enjoyed sports. But...I didn't feel goo about it....I got expert advice (from ATDT forum and meetings) ...I stopped the doc from upping the "prescription" and then we stopped the exercise for a week to see what would happen. And after 8 days d started yelling about how if she didn't jog she'd get fat etc....and the nature of her compensatory thoughts became clear. 

For her it wasn't a compulsion, but in her ed mind the exercise made it "OK" for her to eat. Otherwise eating wasn't "OK". I feel it is imperative for sufferers to understand and more importantly to learn to behave as if food is not only OK in and of itself, but that their lives depend on food. Because they do of course. I agree totally that exercise before before wr makes no sense, not only for physical reasons but also for exposure therapy to the idea that it is OK to JUST EAT, that just being alive requires food.

WE stopped the jogging, and later (after more weight and lessening anxiety) began to allow basketball skills class 2x a week. WE told her that if her weight slipped or if we saw any increase in ed then bball would end! And we told her that the only acceptable reason for her to play sports was to have FUN, and if we saw any indication it was for other than that we would consider stopping her play. And I watched her like a hawk! It took a while, and there were blips, but for our girl, I feel pretty sure she can play sports now just because she likes them. (Team sports. Return to track and XC still not allowed. Maybe someday, maybe not, I don't know.) She likes being on a team, she's not a star player, she has to eat a lot more, she's learned some great life lessons from sport. (Basketball is very non-perfectionistic, and soccer requires putting fear and harm-avoidance aside, which is super hard for her.)

So while I think it's possible, after wr, to separate out the healthy and the ed reasons for play (just as a recovering person can relearn to use a mirror without obsessing) I do not think that exercise is a safe or reasonable outlet for anxiety for a person with ed, at any time. And yes, I think doctors should get that clearly through their heads.

sorry this got long!
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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Foodsupport_AUS
To my mind there are several fundamental reasons to restrict activity in those with ED's. 
Firstly it may involve risk, especially arrhythmias, early on in re-feeding, secondly it can interfere with weight gain. The more tricky thing is to tease out how much stress is truly relieved by activity and how much is caused by it. 
Being house bound/room bound is stressful in itself. Even if there are activities to do they lack of physical exertion can cause symptoms. Getting outside, some fresh air can be good for us (interestingly my D became severely Vitamin D deficient when being re fed in hospital with little outside time). At the same time being compelled by an illness to over exert, turn a casual stroll into an Olympic event, is not enjoyable, and one would expect is damaging to mental health. Somewhere in between is the right balance. I like the idea of graded activities, trying to achieve it though is the hard part. 

We for the most part have continued walking our dogs during D's illness. For my D it has been the one bit of ongoing physical exercise she has done. Early on one of the dogs was very ill (15 years old). Her slowness put some very natural brakes on to my D's activity. That dog passed away two years ago, by which time she had got used to just walking with me and the other dogs. Not quite sure how we would have done it otherwise. 
D diagnosed restrictive AN June 2010 age 13.5. Weight restored July 2012. Relapse and now clawing our way back. Treatment: multiple hospitalisations and individual and family therapy.
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looking4sunshine
Thank you for that insight. It's hard to know when to listen and when to "buck the system."
We are just now getting close to wr with D, so are seeing a resurgence of the judgemental voice, only stronger and meaner. Our D was a 3 season athlete 6-8 grade (not elete, just avg.) This last track season is what put her over the edge. She was all set to run cc in h.s. until this. Fortunately, she has not been compulsive with exercise, in fact she really avoids it. She complains about her thighs and of course the weight, but given the opportunity to do gentle yoga or muscle toning, she snarls that she's not allowed to and will never again be able to work hard. After reading your post and your D not even wanting to exercise and that it was all the Ed driving her, I wonder if our case will be similar.
What are your thoughts, and how can I "let her off the excercise hook" ? What I mean is maybe she thinks I want her to be this great, elite athlete, and she only did it to please me (and then ed), but what she possibly wants is an excuse to quit running, and doing and being busy.
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Psycho_Mom
IF your d isn't wr yet, then it's too early to tell if her exercise was wholly ed-driven, or if there's an element of pleasure and fun in there that she will be able to find again. I think it would be safest to just veto exercise now, and then slowly add it back after wr if and when she asks for it. Beginning with FUN, team-or socially oriented activities. Running is one of the highest-risk sports there is, not only for the high physical demands but also because it's solitary, repetitive, involves times and counting and comparing, and can exist in a culture that promotes thinness. Some or all of this thread should be in HOF, if it isn't:

http://www.aroundthedinnertable.org/post/cross-country-6421378?highlight=cross+country&pid=1278737902#post1278737902

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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dc

Dr. Sarah Ravin recommended that patients with Anorexia Nervosa or Bulimia Nervosa abstain from all physical activity until they meet the following criteria:

a.) Complete weight restoration
b.) Complete abstinence from binge/purge behaviors for at least two weeks
c.) Consistently eating complete, balanced meals with little resistance
d.) Sufficient hydration
e.) Willingness and ability to increase nutrition and hydration to compensate for activity
f.) Medically cleared to exercise by physician

In her opinion, full recovery from AN involves a lot of criteria which includes the following:
- Ability to enjoy regular physical activity without compulsion.

Please check out the following posts from http://www.blog.drsarahravin.com/
- After Weight Restoration: Envisioning Recovery
- Exercise Caution: Physical Activity and Eating Disorder Recovery

http://www.webmd.com/mental-health/eating-disorders/anorexia-nervosa/news/20040723/controlled-exercise-may-help-anorexia

The FBT manual says: “Much of the focus in the early part of Phase II is on experiments with transitioning control over eating and exercise back to the adolescent child safely. Parents think through this process during the sessions and decide on a course of action based on discussions with the therapist and patient about what is reasonable to attempt. Some families transition control back quickly; others take a step-by-step approach. There is no correct way to do this, but feedback in terms of patient behavior and weight provide important checks on the process.” Treatment Manual for Anorexia Nervosa; A Family-Based Approach, p. 179.

How exercise plays into this equation will vary from family to family. One size does not fit all.

19 yr old d Dx Feb 2012. WR June 2012. Now she is in Phase III and enjoy her study and activities. Try to give the control back to her but still keep vigilant. 
-------------------------------------------------------------------
"The darkest night is often the bridge to the brightest tomorrow."
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kas_US
Totally agree, mamabear!

Weight restored/Phase II
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mamabear
I agree that one size does not fit all as time moves forward and weight restoration is attained and maintained. My girl was slowly able to go back to basketball (which she now quit), volleyball (which she now quit), and softball- which she loves.

But I personally do feel that while malnourished and during refeeding and probably several months in as the ED voice subsides a bit and loses power- exercise should not be a part of the picture. And as it is added back in, it becomes very obvious to the trained Ed eye that we all have as to whether it is truly enjoyable or not. My only beef with Ravins
Advice is the " 2week" thing. That is totally unrealistic. Kind of like the time supposedly of the " stages"..... Which we all know is laughable.
Persistent, consistent vigilance!
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looking4sunshine
Thank you guys :-) mine is not currently running or exercising and I'm not really interested in having her back on a running team. My question has more to do with giving her a way to walk away from sports without looking like she had to because of ED. Similar to the idea of having one "backed into a corner" and giving one choices so as to get out with dignity (from another post on atdt). ED doesn't like or believe anything I say, so I really was just looking for a few experienced words to say " you don't have to be a runner, it's o.k. with me" :-) thank you all, I find comfort and strength through these posts.
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mamabear
Looking4sunshine- I think its a matter of time and absolutely zero pressure about it.

I think we all get caught up in having a kid who is a straight A student, or the runner, or swimmer or whatever and we ourselves can forget what is truly important. Health and contentment with oneself. Our kids don't have to be" the best" at anything other than the best them.
Persistent, consistent vigilance!
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anotherbite_CAN
Here are two kartini blog posts on exercise:
http://www.kartiniclinic.com/blog/post/hard-news-about-exercise-and-recovery/

http://www.kartiniclinic.com/blog/post/exercise-and-the-severely-anorexic-patient/

there was a fb discussion on the FEAST fb page where a clinician weighed in and mentioned interestingly that OCD thinking could increase as weight went on and coul move around to different things.  Compensatory exercise could be one of those things- or the ocd-type thinking linking exercise to food intake (if I exercise I can eat)....interesting that that thinking can increase especially after w/r ----- would then seem to be a very tricky time to start to introduce exercise.  The notion that the kid is doing well and can now manage isn't born our.  In fact, early w/r may be the very time NOT to introduce...


D dx at 10 years old in June 2011. She is now 16 and happy and healthy.  We were IP for 8 weeks and then refed at home for what felt like forever.  We chased vertical growth for years...as is typical for the age.
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MumTo2UK
I'm following this thread with interest. My D is one who continues to exercise finds it easier to eat more on the days she is allowed to exercise (and she is slowly gaining weight). Our CAMHS & medical team support exercise (to a degree) but I don't... or at least I don't until she has more control over it.

Then, this evening, I had a conversation with a woman who is fully recovered from AN (she was 19 when she was diagnosed and is in her 40's now) who agreed with CAMHS. She said she continued to exercise throughout and that she'd have become even more defiant if anyone had tried to take it away from her. She also ate more so that she could exercise and eventually recovered.

I really do think it's a tough call.
Mum of 17 year old daughter with AN seeking guidance
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mookie
My D is wr for 6 months (9 if you count the wr weight the psych gave her, but I wanted - and got - another 7lb on her) and still isn't allowed to exercise.  She admits that it scares her because she was under such a compulsion to do it.  For as long as she feels like this, she will not be allowed to exercise.  She can have as much activity - dog walking, or walking to friends as she likes, but not 'designated periods' of exercise. 
Mum of 16 year old daughter with anorexia. Weight restored (to my level, not the dr's!), giving control back slowly, under very watchful eyes. 

“When everything seem to be going against you, remember that the airplane takes off against the wind, not with it ....”
Henry Ford


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mamabear
Mum-

" would have been more defiant if they had taken it (exercise) away from her"

Well of course! ED would have been really mad! Obviously the fact that this woman said that means that exercising some how was linked to ed.

The fact that your d finds it easier to eat bc she has exercised is also ed. It feeds into the guilt complex that ed puts on them .... Can't you just hear that evil voice now? " Well at least you exercised...maybe you won't get too fat. At least you are not lazy, etc etc etc".

Part of refeeding and recovery from ED is accepting and dealing with the FACT that. ED is going to HATE it every step of the way and make it hell for the sufferer and the family.

Why are treatment teams so content to not rock the boat? If your kid had a stress fracture and was told to stay off of their feet and legs, would we let them just go jog a few times a week? WHY IS THIS DIFFERENT? Because we cant " see" their heart and organs and muscles and bones? Because it is a mental illness and they are going to freak out when we say NO!

None of this is easy.... And for me frankly giving into eds wants and needs only prolongs recovery. Who wants this to last longer? No one!
Persistent, consistent vigilance!
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mec
I think when exercise compulsion is an integral part of the illness, it is nearly impossible for these kids to successfully go back to competitive athletics. We thought that my d was able to do athletics successfully for years, after being w/r. After all, she ate well, her state was good, her weight was good. We saw no apparent signs of the ED for years. However, last year when she quit cold turkey, we realized that in reality, the ED has never really left and that it was only when she decided that she had enough that she had to deal with it. We went through months of angst, body dysmorphia, trying to adjust to her new self as a non-competitive athlete. She went through a period where she started obsessing about working out at the gym, etc. It was REALLY tough. CBT was crucial in helping her find herself.

Then she went through a period of inactivity where she didn't want to do anything. That was also concerning because that is so "not her" and her mood was sour. But finally she found her happy medium where she now does what she always loved to do, even as a little girl, which is being out in nature exploring and being adventurous. Now she goes bouldering, kayaking, walking in the river, running/walking in the park, being in the garden, etc.

21 year old daughter who was DX with RAN at 9 years old. The work of recovery is ongoing. 
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trusttheprocessUSA
As you know early on I was told by our local professionals (pediatrician, nutritionist and therapist) to let my son continue to run - " it will help stimulate his appetite". He had lost 30 lbs at 12 yrs old. The only person who said NO was his PE teacher - she may have saved his life.

What I didn't know nor any of the professionals we sought help from was that Eating Disorders destroy the heart - literally.
The heart should be monitored regularity until complete cardio recovery has happened. Whether a person can go back to sport most likely needs to be on a case by case basis. My child has been able to return to a high level of activity and now the concern becomes what happens when he stops, via injury or gets tired of playing, etc.

Every time I hear about a young person dying of cardiac arrest I wonder if they had an Eating Disorder and received the same expert advice I got - to "let he run it will stimulate her appetite". This is completely unacceptable.
Son diagnosed @ 12.5 yrs old with Severe RAN 2/11. 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. 2017 getting ready to graduate slipping lost 8lbs. Fighting our way back.
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WeNWinning
My D did not have exercise compulsion and she was allowed to go back to her sport (tennis) after she was weight restored.

Prior to tennis, she was a soccer player, and a diver.  She showed talent in all sports and, of course, the coaches encouraged each one.

She was 12 after I got her weight restored, and a talented and driven tennis player.  the coach loved her and pushed her skills.
She won many tournaments and within the year was State champion, and fractured her back in two places.

She was nowhere ready to go back to that sport or any sport, because her bones were way to fragile and needed time for healing.
She had to stop volleyball because of her fractures.

and she never really played sports with any seriousness again.

Later in life, she told me how much it was her ED pushing the drive in sports.

Even without any exercise compulsion.  It was the drive to excel and win.  And it really destroyed her sense of self because her self-esteem was only based on winning awards and not for the person she was inside.   She always felt that she had to perform to be accepted for those accomplishments.

So, it's not just about exercise compulsion, it's about the drive to be "perfect" and excel, that we all need to consider.



WenWinning (formerly wenlow) - a Mom who has learned patience, determination, empathy, and inner strength to help her young adult daughter gain full remission after over a decade of illness and clinician set inaccurate weights
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WeNWinning
And yes, Mamabear, Dr Ravin's advice about exercise is totally unrealistic and does not consider all of the factors regarding exercise - and especially sports that wreak havoc on fragile bones.
WenWinning (formerly wenlow) - a Mom who has learned patience, determination, empathy, and inner strength to help her young adult daughter gain full remission after over a decade of illness and clinician set inaccurate weights
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mamabear
Well put Wen!
Persistent, consistent vigilance!
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Goingtobeatthis_AUS
Just for balance- we were a family where d was allowed to return to basketball around of just before WR. She had severe exercise compulsion when ill and it was tricky working out the 'compulsive element' from an activity which she had enjoyed immensely since she was 6. However we did not allow a return to any solo activity for a very very long time and even now, it is discouraged. But basketball has been a key part of her social life, is not all about winning, she coaches and loves this and now plays a very high level which can cause some stress on occasion but she has learnt great strategies now for dealing with the stress associated with it.
What we now have to balance, is that her anxiety (not ed) is alleviated by some level of physical activity. When no activity, her stress levels and angst about uni studies etc is heightened. Our way of assessing if healthy versus ED compulsiveness is her ability to be distracted or diverted from the activity - if coffee date with friends trumps the walk then we know we are ok!
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.
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WeNWinning
Certainly not all sports are the drive to win - and provide some socialization.  I know my D got that with volleyball.   I think what is important to consider is that their bones are
fragile for a long time after WR.   And that there are other ways to get some physical activity that does not do as much damage as some of these sports - like yoga

Socialization with sports is important and there are other activities to join that encourage socialization.

Each child is individual - and you will know what is driving them with their sport.  If they are on less competitive teams, it's also a way not to have that drive to excel and win.
WenWinning (formerly wenlow) - a Mom who has learned patience, determination, empathy, and inner strength to help her young adult daughter gain full remission after over a decade of illness and clinician set inaccurate weights
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mamabear
I started this thread not to debate the importance of exercise and social comraderie of team sports, but to simply question why during refeeding and those early months of healing any doctor or therapist in their right mind would recommend exercise. Their bodies are weakened both outside and inside. Their hearts are affected.their bones and muscles. Many children have had stagnated growth. It is an injustice to recommend exercise at this time. It is ludacris.

When inpt my daughter would make mistakes on her homework on purpose so she could " exercise" by violently erasing to the point of blisters on her fingers. I told the nurses and they thought I was crazy. I wrote my daughters answers down for her. I used a pen.

I was right. It had to be stopped. All of it. Completely.
Persistent, consistent vigilance!
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