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KLB Show full post »
deenl
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deenl wrote:
... My son restricted terribly so getting nutrition into him was essential but even then we knew that we had to help him towards a life worth living. We did it by creating a calm and loving atmosphere (well as calm as it can be during initial refeeding) and by making many small changes in his environment. I used to wake each day and lie in bed for 10/15 mins thinking what tiny change I could make that would help him towards health and happiness. 

One technique we used we called the water drop technique. You know after the fact that a water drop falling again and again and again on a rock can erode it. So I would say something or make a suggestion and not expect a reaction, repeat a few days later, and a few days later. It was as if I was introducing the idea and with repetition it became more acceptable or seemed more possible. So something like 'It would great if A called in some day' Just that, no discussion. And mention it again a few more times in passing and then I would arrange for A to call in for a short time. Slowly we built a more normal life.

We used to also act as if all was normal in certain areas. So for example his big brother would talk to him about a new computer game even though it looked like he was not listening. Big bro kept it up day after day, God bless him. Then big bro got ED bro to look while big bro played, then ED bro played a bit himself, then became mad about the game, then they started playing with others online although ED bro would not talk himself, then eventually he talked (big bro came to whisper that to me the first time with a grin absolutely splitting his face). What I'm trying to show is that we nudged him towards normal teenage behaviour by changing our behaviour. We never had a discussion about it, we just guided him along the path unbeknownst to him.

It seems to me that your daughter has amazing insight into how she feels and what the challenges are. However, it is almost like the discussion is working as an avoidance technique to avoid actually making the very difficult steps towards health. Like my son, the steps are probably too difficult for her to take herself. But if you start, for example, talking about wanting to get out and about yourself and that you are thinking about volunteering. Mention it lightly now and then. Then find something, then do it yourself, then ask her to join you for an hour, then a bit more etc. I am only giving an example. You will likely know better what will suit your daughter and yourself. 

For many people with an ED too much discussion has a detrimental effect. It maintains the dysfunctional thought processes and indeed can strengthen them. But there is a balance to be struck. It is important to acknowledge what they say and show that you have heard them and to express sympathy but no more than 2/3 sentences and move on to more normal topics. Normal? I didn't know any normal topics so I had to prepare them in advance! I would have a few snippets of news about friends or family or a funny news story or meme. When they are deep in the ED thought patterns we can refuse to join them there and instead show them normal conversation and normal life again.

I hope you can see some areas where you can slowly, with small steps guide your daughter to a life worth living.

Wishing you continued strength and courage,

D


You are such a wise soul deenl. I love your posts. I know this isn't my thread and I'm sorry to hijack yours monalisa, but I have a question. This waterdrop technique....did you start this before or after weight restoration? 


Hi, 

I thought I would move the answer back to your thread. We use(d) this technique all the time and not just with ED son. Separately, his mentor in school also found out that it worked there too!

Other techniques we used:

- any compliments would cause a huge negative reaction.But if he 'accidentally, on purpose' overheard one family member say something nice about him to another it didn't. It was a way for us to show our understanding of how hard it was for him without the ED punishing him. We learned this technique from family therapist.

- teaching others, in our case mostly little bro, tools and techniques where ED bro could hear them. We discovered this technique when little bro asked to become vegetarian. I said no way, explained that it would be dangerous now that we knew there were ED genes in the family. ED son overheard and asked why it was ok for him. I simply said that it wasn't, that it was bad for his health too and went off to do something. A couple of days later I found the teeny, tiniest note on my bed to say he would eat some chicken noodle soup. It's a wonder I didn't miss it. Of course, chicken noodle soup has very few calories but I choose to sacrifice the calories for the win of him eating animal protein. It became a regular in the menu and I made up the calories at other meals. A few weeks later, without discussion, I introduced the exact same soup but with beef. I think a big part of why this technique works is that there is not debate or trying to convince him we are right. Debating has been shown to cause people to dig their heels in and become even more entrenched in their opinion. I just stated it as fact and let it to sink in.

We also use this technique with anxiety. Little bro was afraid to go upstairs alone so I asked if his wise owl brain thought there was actually anything to fear. No. So it was his ancient crocodile brain that was fearful. He could see that. I explained that the way I had been doing it (going upstairs with him) was actually enhancing the fear by making it seem that something normal was fearful. I introduced the concept of laddering; first I would walk up a couple of steps behind, after a while I would wait at the bottom of the stairs, etc. We were training the crocodile brain to understand there was nothing to fear.

Little bro also suffers from nightmares so during a separate phase I explained how the crocodile brain released fear hormones that freaked out the wise owl. We could calm down the hormones and wise owl part of the brain by slowing our breathing and consciously relaxing our muscles. Little bro himself started to imagine he was jelly/jello flopped on the bed and trying to sink through the mattress. Again, practice would help hone this skill. Now he falls quickly back to sleep after a nightmare. All of this was explained to little bro where ED bro could hear and he has practiced them himself, all without telling us specifically, naturally ðŸ˜‰

- not communicating directly. This started when he was IP. We would ring each night to say goodnight. Eventually he came to expect it and he was able to open up. I guess it was kinda like the way we talk in bed in the dark with our spouses. The lack of facial expressions and the intimacy of only hearing a voice makes some things easier to say.

At home, I would send him short email if I needed to tell him something. He could choose when to read them and read them when he was feeling strongest. He knew if he didn't reply within a few days that I would talk to him about it which he hated more. Medical care is voluntary for children above 13 in The Netherlands (unless literally just about to die). Using this technique his doctor was able to get him to tell her that he didn't want to die. Due to how she had phrased her question, this allowed her to treat him and talk to me. 

And for pleasure and human contact, he and my mum used snail mail to send letters, pictures, bits 'n' pieces to and fro.

Some of these things we discovered by accident, some we were told about and some we figured out when we thought about what had worked best in the past. It can be very subtle and you will need to pay attention but I am sure you will discover your own tricks too. Be sure to share them with us!

Hang in there. It's a long haul but the pleasures on the other end are in proportion to the hell. I still feel so full of joy at some everyday things and casual comments from the kids that tears come to my eyes. Honestly, seeing your child singing, laughing, being goofy, horseplaying and enjoying life is an indescribable reward for the grit, grind and long haul of recovery.

Warm wishes,

D
2015 12yo son restricting but no body image issues, no fat phobia; lost weight IP! Oct 2015 home, stable but no progress. Medical hosp to kick start recovery Feb 2016. Slowly and cautiously gaining weight at home and seeing signs of our real kid.

May 2017 Hovering around WR. Mood great, mostly. Building up hour by hour at school after 18 months at home. Summer 2017 Happy, first trip away in years, food variety, begin socialising. Sept 2017, back to school FT first time in 2 years. [thumb] 2018 growing so fast hard to keep pace with weight
  • Swedish proverb: Love me when I least deserve it because that's when I need it most.
  • We are what we repeatedly do. Excellence Recovery, then, is not an act but a habit. Aristotle.
  • If the plan doesn't work, change the plan but never the goal.
  • We cannot control the wind but we can direct the sail.
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atdt31_US
I believe Dr. Gaudiani's book also speaks to exercise being a negative for bone health in the context of eating disorders -- which is contrary to normal.  
Mom of either pre-diagnosis or non-ed underweight 12 yoa (as of March 2018) kid here to learn how to achieve weight gain.  BMI steadily in the mid 12's for nearly her entire life.  Born 2006. UPDATE:  April 2018 diagnosed ARFID, based solely on weight being less than 75% of Ideal Body Weight.  Mildly picky, but mostly the problem is a volume/early satiety issue, along with abdominal discomfort and chronic constipation, all present since birth. FWIW ED-D is a fraternal twin and we have no other kids.
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scaredmom
KLB,
Hope things are going well.
Sending strength and support.
XXX
When within yourself you find the road, the right road will open.  (Dejan Stojanovic)

Food+more food+time+love+good professional help+ATDT+no exercise+ state not just weight+/- the "right" medicine= healing---> recovery(--->life without ED)
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Ocras68
Huge thanks to deenl who made me cry with her wisdom and experience - have just read her advice of 31st January and will be using lots of those suggestions.  KLB, I read your thread every time I come online.  I know you will prevail because you are stronger and brighter than all this vile illness can throw at you.  Hang in there.  Xx
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HopeNZ
What Ocras68 said!  Thank you, deenl, for your two most recent posts on this thread.  Your wisdom really strikes a chord here, especially regarding indirect communication with your ED son, and tapping into the wise owl brain (which my younger, non-ED son who suffers from anxiety struggles with).

And, again as Ocras68 says, I too have great faith in you, KLB, being 'stronger and brighter' than your s's ED.  'Stronger and brighter', love that!
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gummy131
Wow KLB this exercise compulsion sounds just heartbreaking to manage!

It really does sound like your son is a true addict. And you wouldn't offer a recovering alcoholic some wine at dinner. Just so, your s should not be given small doses of his "drug of choice." The addictive pathway has already been formed. Unfortunately, any alcoholic or binge drinker can understand that their behavior is a profoundly negative one. There's nothing really great about binge drinking. Exercise is another story. It can be lots of fun to be a part of a team and work towards a goal, and it sounds like your s has built a whole identity around his addiction! Oy vey. 

Stand your ground. You are already kicking butt and taking names.
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mamabear
Hello- I just skimmed through this entire thread and I feel compelled to post to you. 

My daughter was diagnosed sed at ten with anorexia. She had a SEVERE exercise compulsion. She had auditory and visual hallucinations. She talked about her own death. She showed me what dress to bury her in.  She had rituals surrounding movement and exercise. She never sat down. She made mistakes on homework on purpose so she could violently erase. Absolutely everything she did she would try to make into cardio exercise. Everything. In fact- the way we really truly knew she was sick as hell was when we heard noises at 3am and found her screaming, crying, covered in sweat doing crunches in her closet. She had bruises up her spine from doing crunches in the shower. It was endless. It was torture. 

My daugter also needed ever increasing calories to gain weight. She needed 6000 plus for 2.5 YEARS. She grew nearly 9 inches. She went through full puberty. She doubled her initial diagnosis weight. 

So in reading through your thread I am going to throw this out there and I’m not going to sugar coat things. Sometimes the cold hard truth needs to be said. And I’m now 8.5 years out and have been around long enough to have talked with hundreds of families etc. who have been through this too. 

And before I lay it out- remember to NEVER give up hope. Ever. My daughter is away at college 8 hours from home living a great life completely free of ED. You can read my giant thread called “ Unbelievable Progress”... 

From what I have read it sounds like evetyone is very  very scared of your sons ED. Your husband, your team of professionals, and you. I hear a lot of “ he won’t” and “ he can’t”. I hear a lot of mourning for what he has lost. I get it- I do. I had to go through this too. I remember I had lost all confidence in my mothering. I was terrified. 

And then I read “ Brave Girl Eating” and “ Eating with your Anorexic”  and found this forum.. and 27 days into a joke of an inpt stint we took her out and brought her home to tackle this. 

I found for me- I had to get PISSED. I had to COMPLETELY SEPARATE THE ANOREXIA FROM MY CHILD. And only in doing that was it possible to endure the hell that is refeeding. 

Bottom line here is YOU are his parents. He is absolutely 100 % under his EDs control. Think of what its like for him to have that voice in his head yelling at him and bullying him every minute. Your son needs you to take on his ED bc he simply CANNOT. He needs to be able to blame you- to let ED think you are a b%#^> so that HE CAN eat. I am not making this up- this is what my daughter has told me. She was RELIEVED when we took total and complete control. Did she fight scream spit throw things punch etc? Yep. And just like your son she tried to constantly move even while eating. Constant shaking. At night she would try to do planks in the bed. She would tighten her abdominal muscles. I slept with her in the same bed for a year. I would have her take warm baths, do imagery and progressive relaxation, had white noise, massage etc. And sometimes I had to put her in a bear hug and put my legs over her and talk her down when the exercise compulsion was tearing at her. I sat outside the shower, the toilet. She was never left alone. 

Your son CANNOT DO ANY EXERCISE NOW OR FOR A VERY VERY LONG TIME Maybe he will never compete again. And that is ok. Your husband needs to let go of this. Having a son who is ALIVE is more important that sports. I know you know this and he knows this- but it becomes a part of our own identity as parents too. 

This disease kills. I know people who have found their children dead. His heart and bones CANNOT handle any exercise.And as someone here said earlier, allowing ANY form of exercise is like giving an alcoholic a drink. I learned this the hard way. I thought we were being cruel by not letting her at least blow off steam. We let her hit a balloon around for 15 minutes. She wore a fleece jacket and turned it into a violent cardio event. We let her drop ping pong balls into cups from our top landing but all she wanted to do was run up and down to get the balls. I quickly realized WE were aiding and abetting a monster that was killing my child. She was tortured. We stopped ALL exercise. And by that I mean she was not allowed to get the mail. She was not allowed to go upstairs unless necessary. She got 2 warnings and then had to drink ensure. I had ensure stains on my ceiling for years. But if she threw it at the ceiling, we got another. If she did it again we put it in a special bottle with a no spill lid. And we had to follow through.... no matter the crying, pleading, begging, stomach aches. You name it. No matter what. Life stopped until she ate. Period. 

She later told ne that she was RELIEVED when we stopped exercise bc it was hell. Her body hurt and ached. She couldn’t stop. We had to stop it for her. Again- separate it from her. I envisioned a big black evil mass with its talons wrapped around her shoulders whispering horrific things to her. I was going to kill that son of a b. He was not going to get my baby. 

We pulled her from all sports, from recess, from PE. 

And we have absokurely zero regrets. 

Another example: for 3 years my d begged to run cross country. For 3 years we said no no no no no. Running is dangerous for you. Year 4 I asked her “ So do you still want to run cross country?” She looked at me like I was insane and says “ No I hate running mom. That was my eating disorder.”  Eventually she was able to play softball, to go roller blading, ride bike, go to a Zumba dance class... but only when it was fun. Only when it was absolutely 0% driven by ED. 

Many people I know who had very competitive athletes who got anorexia ( some olympics bound/a good friend of mine’s daughter was a kickboxer) when well and in a solid remission wanted nothing to do with the sport. Because the sport had become intertwined with ED. There was no joy. They find other things. My daughter started playing guitar and writing songs. She just released her first album. She just got her first big show in Minneapolis! 

We did a large milkshake every.single.day for 2.5 years. Hagan daz or Ben and Jerry’s, heavy cream, and canola oil. It was a big 2200 cal shake but it was necessary and I believe was our key to saving her life.  They need FATS FATS FATS FATS. The brain is 60 % fat. And until your son gains weight and stays stable and climbing nothing will change. He will just stay in eating disorder purgatory and so will you. 

Its scary as hell. I know that. But you fake it til you make it. 

Dont negotiate with the terrorist who has your son hostage. I would absolutely recommend magic plate. That means you buy food, make the food , make shakes, and his only job it to eat it. Period. His job is to trust in you- that you are going to give him his medicine. If he had cancer and hated chemo bc it made him vomit and his hair fall out would you give him half a dose? Let him skip a session? Of course not. 

ED is no different. Only ED is more deadly than almost all childhood cancers. Would you let your son swim if he was fighting leukemia? 

Your son  cannot be logical. There is no logic. And we as parents have to actually realize that our urge to “ protect” them by not “ causing more anxiety” because we fear things like taking away their “ identity” (swimming ex) actually keeps them sick. We have to be able to face their discomfort. We have to poke tgecbeast. And we have to remember that the eating disorder will do anything and everything to get them and kill them. I used to jump around in front of a mirror and splash cold water on my face and yell at myself “ bring it ED. Show me what you got. I’m going to win. I’m gonna kick your ass.” Sounds ridiculous but it helped. And of course there were times I failed. Times I cried. Times I thought I couldn’t do it. Times I thought I would never get my girl back. But we did! And you can get him back too. 


1) food and weight gain are the only way out of this. And SCIENCE SHOWS THE FASTER THE BETTER!!!

2) they do not have to acknowledge their illness or “ want” to get better in the beginning or for a long time into the process.

3) FATS FATS FATS FATS there is no recovery without massive FATS

4) FEAR FOODS MUST BE ADDRESSED. Without this they will be stuck with food rules forever. Some rip the bandaid off ( we did- I’m a strong believer in this), some do laddering... but it must happen.

5) separate ED from your loved one. They cannot control it. It controls them. Imagine your loved one at gunpoint by a monster spewing aweful lies. Your real kid is in there and relieved you are kicking EDs ass for them until they are strong enough to.

6) when underweight and struggling stop sports and any unnecessary exertion ( recess, PE). Sometimes this needs to be for a very long time especially for those with exercise/movement compulsion. Also they must be willing to eat additional replacement calories without argument.

7) talk therapy is pretty much useless until further down the road. The brain cannot work correctly when repairing itself from starvation/chemical imbalances.

8)Dieticians who understand ED and FBT are few and far between. Dieticians can often cause more harm than good. Reinforcing ED by focusing on numbers and exchanges. What is “ healthy” for an ED person is VERY different.

9) Weight goals are almost always set TOO LOW. Many of us have found our loved ones need to be at a much higher weight percentage/BMI than pre-ed to get into full recovery.

When you feel “ stuck” try adding another 5-10 pounds. Many people have witnessed dramatic changes.

10) this is not your fault. This is no ones fault. This is a disease of the brain. Don’t look to the past. Focus on now.

11) This takes years. This is a marathon recovery. Simply restoring weight is only the first step, critical, but only the first step.

12) Trust your gut. Don’t negotiate with ED. Stay calm. Brick wall. There is no logic so don’t waste your breath in debates. “ food is your medicine” “ hmm hmmm I’m sorry this is so hard now take another bite.”

13) inpt/residential care does not mean failure. Sometimes it is absolutely essential and life saving BUT they do not come home “ cured” or in remission/recovery. Hard work and many things of the above list still remain the same.

❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️

You can do this. You can. 
Persistent, consistent vigilance!
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Mamaroo
What Mamabear said.

Here is her thread:
https://www.aroundthedinnertable.org/post/unbelievable-progress-keep-going-5241668?highlight=unbelievable+progress&trail=25
D became obsessed with exercise at age 9 and started eating 'healthy' at age 9.5. Restricting couple of months later. IP for 2 weeks at age 10. Slowly refed for months on Ensures alone, followed by swap over with food at a snails pace. WR after a year at age 11 in March 2017. View my recipes on my YouTube channel: https://www.youtube.com/channel/UCKLW6A6sDO3ZDq8npNm8_ww
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