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mamabear

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Reply with quote  #1 
Hi everyone in ED land. I check out the forum on occasion and do a lot of behind the scene emailing and phone calls with some ED families across the country and one topic seems to be on the forefront this week. 

There are SO MANY TIMES during the refeeding and the recovery process where we get into a sort of "normal" routine. Where things feel relatively calm. Where the kid is eating without a fight, is getting back into a lot of normal kid life.Where we may go weeks and then months without really seeing or feeling ED. And then BAM BAM BAM or little knock knock knocks....it is back. It may start with very "small" things...like complaining about a dinner. Like whining about being full and can I just not finish this sandwich. Of saying "I don't want ice cream tonight" ( but the tone in which it is said coupled with not wanting to finish the sandwich the day before etc starts to add up and make the hair on the back of your neck stand up). And suddenly you are full of self doubt again. Am I imagining this? Am I making big deal out of nothing? What is happening? 

Here is what is happening. Your child is telling you that ED is getting louder again...and that you likely you have gotten a bit complacent. It is noone's fault. It happens. It happened to me many many many times. That they are hitting puberty, growing...that hormone surges that you cannot see are affecting them and ED. It is time to tighten up the hatches. It is time to up the ante again. 

Remember that these kids do not go through puberty and growth like a normal non ed kid does. They do not gain and grow. They do not get the stereotypical rounding of the face and body before they shoot up. They grow and don't gain which equals a LOSS. And this growth can be internal as well as external. They can grow FAST and lose even FASTER. 

This is where a parent needs to acknowledge their fears. The fear of "making your kid fat" is a BIG one that comes up again and again. Please listen to the link to JD Oulette's interview by Laura Collins that I posted here the other day. Why are we more afraid of "making our kids fat" than them suffering and possibly dying from ED? The fear of having to "poke the beast" again. After relative calm there is nothing worse than having to poke the beast and brace ourselves to see how loud it really has gotten again. It SUCKS! I KNOW! And that gut punched feeling when ED reappears doesn't really ever go away....but you have to fully accept the concept of "feedback not failure" and expect setbacks. This is not a straight line. It zig zags and stagnates and goes all over the place at times. Use these blips as a wake up call to get re-energized. As one mom I talked to this am said "I need to re-boot". Yep- exactly. 

Listen and watch and tackle the ED. Plug the holes. The sandwich must be fully eaten again. The plate must be cleaned again. No switching out the ice cream for yogurt and nuts....until you see the ED behaviors die down again.

Jack up the fats. Jack up the calories. Get more weight on. Measure height. And most importantly- do NOT EVER DOUBT YOUR GUT.  I remember feeling that initial reaction to just want to ignore the "little things" and then reminding myself that those "little things" turn into BIG THINGS in a heartbeat. 

I fed my daughter through nearly 9 inches, full puberty, and an over doubling of body weight. It took from 10.5 to 14. She has continued to gain weight appropriately on her own now for the past 3 years. And it will be different for each kid based on genetics and all sorts of variables. 

Just do not lose sight of the end goal. And recognize when you have gotten a bit complacent. It happens to all of us multiple times. ED is one tough bastard. And just because things have been relatively quiet and humming along does not mean that he is not still lurking.

I am rooting for all of you every single day. And I want to thank every person from this forum who in my early days of 2010,2011 gave me the reality checks I needed once in awhile to kick my butt back into gear. You know who you are. 

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Persistent, consistent vigilance!
toothfairy

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Reply with quote  #2 
Thanks for the reminder mamabear, and I agree that podcast with JD is VERY interesting indeed.
In fact it could be the difference for your loved one in being " part revovered" as opposed to " fully recovered".

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Son,DX with AN, (purging type) age 13 in October 2015 ,  (4 months immediate inpatient) , Then FBT at home since.and making progress every day. He is now in good recovery, and Living life to the full like a normal teen. We are not completely out of the woods yet, but we can see the light at the end of the tunnel, thanks to ATDT. Hoping to get him into full recovery and remission one day at a time.
hopefulyetscared

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Reply with quote  #3 

Thank you mamabear for your post. So timely in my life right now. I haven't been on this website in months and decided I needed some support right now. 

We are exactly as you described, we are sort of in a "normal" routine. And I am struggling as to where to go from here. My daughter is 14, just started high school. She was diagnosed with AN at 12 (almost 2.5 years ago). Fortunately we intervened early and life stopped and we were living in hell for a few months as we restored her weight. Then things calmed down a bit as she was able to resume her life more or less but of course we still had plenty of battles with the ED, but over time they got less fierce and less often. 

Fast forward to today. From the outside she seems like a typical 14 year old. She goes to school, goes out with friends, plays soccer, dances and maintains her healthy weight and is gaining weight appropriately. She eats a varied diet. Will eat anything I ask of her. And this is my struggle. I make her breakfast, I make her lunch and snack for school and dinner. She chooses afternoon and evening snacks, but usually I still have to remind her and she still struggles to make the decision on her own. She likes to ask "what do you think" and I try so hard to tell her she needs to make the choice. She does eat out on occasion with friends or at friends houses and she tells me what she eats (who knows for sure) but her weight has not been compromised. 

I feel she is "living with the disease". She does what she has to do to have the life she wants, under the rules of my house. But my concern is that on her own she wouldn't be able to eat adequately.

So...do I keep "supporting" her eating and continue to wait for brain to heal or am I enabling living with ED??

I have thought about what will happen if I let her take over and just see what happens. But I know weight will go down. And my bigger concern is that she will eat but she will cut out variety and the "fear" foods she needs and then what? 

Thanks for any advice you can offer.
HYS

toothfairy

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Reply with quote  #4 
Hi there,
You describe typical behaviour for where you are right now,.
Please note, this illness is a marathon not a sprint.
Average time to recover from anorexia is 5-7 years.
Best case scenerios seem to be 2- 3 years..

However, your D is only 14, she still has a huge amount of growth and recovery in front of her for the next few years, in fact she should grow up to her early 20's.
Keep getting those fats in , butter , cream etc...
She is likely going to need monitoring for the next few years, whatever you do , I advise you not to give her control of her meals for a very long time, at least a couple of years.
This is a long road & relapse is common...

I would also consider pushing her bmi up further & seeing if her state improves aswell.
Best wishes

__________________
Son,DX with AN, (purging type) age 13 in October 2015 ,  (4 months immediate inpatient) , Then FBT at home since.and making progress every day. He is now in good recovery, and Living life to the full like a normal teen. We are not completely out of the woods yet, but we can see the light at the end of the tunnel, thanks to ATDT. Hoping to get him into full recovery and remission one day at a time.
persist

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Reply with quote  #5 
Mamabear, thank you for your post. Your story has consistently been an inspiration for me. You and your D are my heroes!

Hopefulyetscared, I could have written your post, almost word for word. My D was diagnosed with AN the week she turned 12. She will turn 14 later this fall and is still in 8th grade. But everything else-- soccer, going out with friends, school, and the fact that I still prepare pretty much every meal and snack-- is the same. And when I encourage her to make her own choices for what to eat, sometimes she chooses something adequate but often she does not. She doesn't have fear foods, which is great. She is happy, strong, active, and looks fabulous. She has actually become a more adventurous eater than she was before she started restricting. But I think we-- and probably you-- still have a way to go before these girls can be trusted to make the right decisions on their own. 

Is your D doing any therapy right now? We took a break for about a year, and now D is seeing a new therapist because of some anxiety (not food-related) this past summer. The therapist is not an ED specialist, but she was recommended by the head of our ED clinic from two years ago, who is aware of our concerns this past summer and can start to see D again if we think the ED is underlying the more recent problems. 
bewell

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Reply with quote  #6 
Thank you for this post. I think this might be a situation that I have to face now. Our 14 y old D is WR for 3 month. It seemed that we were doing ok with food until 3 days ago. We noticed some minor changes, exactly how you described it. Not finishing her juice("people don't have to finish if they are not thirsty"), switching one food for another, went back to comparing her brother's plate to hers,.. We have weekly weights in with our FBT therapist and last week the weight was good, so we are planning to wait and pay close attention until weight in this Friday. If the weight is down or we see more behaviors until Friday, we'll probably have the therapist tell her about our plan to go back to "magic plate". Do you think they take it better coming from the therapist? Also, how long do you think the hell will last this second time after the re-feeding until we get to "normal" again?

Thank you in advance
deenl

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Reply with quote  #7 
Hi hopefulyetscared

Quote:
Originally Posted by hopefulyetscared

So...do I keep "supporting" her eating and continue to wait for brain to heal or am I enabling living with ED??



Kartini Clinic recommends parents remain the food providers until 17 or so when hand over in preparation for adult life begins.

https://www.kartiniclinic.com/blog/post/the-kartini-meal-plan-de-mystified/

Personally, this is the approach I intend to take. Between growth spurts, hormones and teen life I feel the challenge of avoiding a relapse is likely too much for him. Besides, the consequences for his health and the family are so enormous that I am not willing to take the risk.

I think if your daughter is struggling it is a sign to keep or increase support, no matter what their age.

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

  • Swedish proverb: Love me when I least deserve it because that's when I need it most.
  • We are what we repeatedly do. Excellence Recovery, then, is not an act but a habit. Aristotle.
  • If the plan doesn't work, change the plan but never the goal. (but don't give up on the plan too soon, maybe it just needs a tweak or a bit more time and determination [wink] )
  • We cannot control the wind but we can direct the sail.
mjkz

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Reply with quote  #8 
This isn't just for young ones either.  I've found that under stress my daughter still has difficulty making food choices that are adequate.  It is better than it ever was and she does make good decisions most of the time but still needs someone to eye ball it and say yes or no about amounts.

When she is really struggling with snacks or meals, I actually pushed her into making her own decision in kind of a novel way.  I picked three things that I knew she didn't really like that much and then told her she either picked her snack herself or she had to pick from the three I had chosen.  It really helped her to start making choices and not asking me constantly.  I also got to the point where I just refused to answer when she asked.  She was making good choices but seemed to need constant reassurance.  I would tell her I had confidence in her ability to choose and then leave the room giving her a time limit on how long she had to choose her snack.  I think just hearing that I had confidence in her ability (and knowing in reality that I'd see what she had chosen) really gave her boost that she needed.

As far as picking meals, we did FBT starting at the age of 21 after many years of trying everything else.  It took many years and much practice before I would ever let her even contemplate making her own meals.  I had emergency surgery last year and she was on her own for almost a week.  She did so well (but fell apart once I got home!!).  Friends came over to see her and she came up to the hospital and ate dinner everyday from the cafeteria. 
hopefulyetscared

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Reply with quote  #9 
Thank you all!!! So reassuring to hear that it is okay (and even recommended) to continue preparing meals even 2.5 years into this. I just didn't want to be enabling the ED. And I am really trying to insist she makes the hard choices at snack times to help her face ED. I am just hoping that with time things will continue to improve, as it has been. It is so true this is a marathon and not a sprint. I need to keep reminding myself of this.

And yes, my D is in therapy. We started with someone new few months ago. So I am hopeful this change will also be positive. 

Thanks again!
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