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

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I wanted to share this to hopefully encourage someone out there.  It has been 12 months since my first personal journal entry about my then 13 year old daughter's illness.  At this point a year ago we didn't officially know what was going on but we knew for sure that something was seriously affecting our child.  Little did we know what the next 12 months would hold for our family.  We have seen it all over the last year- panic attacks, hiding food, endless standing and pacing, anxiety through the roof, running away, throwing food, refusing to eat, more doctors than I care to remember, 1 week stay at the family intensive at UCSD, monitored lunches at school, tackling her in our front yard to keep her from running into the street, hearing her speak in this low, slow voice that I didn't even recognize as my child, carrying so much weight in her backpack to school just to burn calories, pulling her out of all sports, low heart rate, BMI of 14...and on and on...basically summed up as watching the child we love slip away right before our eyes while we stand there helplessly watching.  If you are on this forum, unfortunately none if this is surprising to you because you are living it also.  I honestly never thought life would ever  return to what I had known before.  Here we are a year later and so much of this is now a blur and honestly hard to even believe. 

Our now 14 year old daughter is happy, healthy and pretty much a social butterfly.  She is back in sports (although not nearly as competitive as she once was), loves to sit for hours and watch movies and eat popcorn, loves shopping with her friends, laughing about boys, slurping on a Starbucks Frappuccino and pretty much being a "normal" teenager girl.   She doesn't like to talk about "when she was so sick" so we don't bring it up often.  We still weigh her once per week and she still sees a counselor monthly.  She is still on meds although she will begin coming off of those next week.  She now knows what she weighs and doesn't seem affected by it at all (she went from 87 pounds to 123 pounds currently).  She is back on her growth curve, and has grown 2 inches in height over the past 3 months!  We haven't seen a panic attack in the last 4 months thankfully.  She really handles her food on her own.  Of course we are watching everything but no longer plate her meals or really worry about her calories.  She is really back to independently eating.  One of the weirdest things is all the foods that were so scary for her while she was sick are the foods she really likes now.  I guess this monster makes them feel the guiltiest over the things they love. 

All in all, we saw the biggest change around 4 months after being weight restored.  It is just like things started "coming online" again and she started returning to the child we knew.  Things she had struggled with for months, such as getting "seconds" at a meal, just went away.  It truly is the most bizarre thing to watch unfold.

Hopefully, this post will bring hope to someone out there that is as scared and confused as we were 12 months ago.  I desperately wanted someone to tell me my sweet girl would be ok, that she would return to us.  I wanted someone to tell me that is was possible for "normal" to return to our home.  It is possible!  I know we are so blessed to have had a child that responded well to treatment... I know others have not been that fortunate that have done the exact same things we have and my heart breaks for them.  But there is hope!  This monster can be beaten!  As parents I think we learn the "enemy" from fighting him daily.  We get stronger...he gets weaker.  He will never sneak into our home again undetected.  We know what to look for now.  As our daughter moves on with her life, we will constantly be on the guard.  We know relapse is a real possibility but we will cherish the present moment where our d is healthy and happy.  Stay strong...even on the days where everything is falling apart and you really just want to run away.  Keep fighting- keep pushing- keep plating- keep counting calories- keep hoping- keep believing this monster is beatable!  There is no stronger force on Earth than the power of a determined parent!  Blessing and prayers for you all who are still in trenches daily.
Wonderful update, edengirl. I'm so happy for you all.

Warm wishes,

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.
Thanks for that great update, edengirl! Congratulations!
You have done an enormous good job in getting her back to normal and intuitive eating within only 12 months! That is really rare!
Keep feeding. There is light at the end of the tunnel.
This is so heartwarming to read!
 Thanks for sharing and so glad things are going well!
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)
Thank you for sharing. I am so happy for you all.
Courage is not the absence of despair; it is rather the capacity to move ahead in spite of despair
Great news!!
so happy for your d and your family 
you were lucky to catch it early and get good professional help 
So happy for you!!! This is wonderful news and so encouraging!! 
Thank you for this positive story. Just what I need today, as we mark week 17 of refeeding and I wonder if life will ever feel normal again.  So reassuring to know our kids are still in there and can come back to us.
So good to read @edengirl. Our daughter is 17 this month and AN has been in our house for over 12 months.  Like you, we have also got our daughter back after some very scary moments thinking we had lost her forever.  We have stood up to that ED beast and I firmly believe that us taking control, displaying confidence in decision making and actions, and providing care and compassion - has been the key to success.  It's been tough and not all practitioner advice/services have been of help or value - in fact - some caused her to want to jump out the window and commit suicide.    You need to trust your parental instinct.  We were told to remove everything from her if she didn't gain weight, including her part-time job.  We refused to do that as it was the only sense of self-esteem that she had.  We were proved right....we said to her, if you want to keep your part-time job...you need to eat.  If you want to get your drivers licences, you need to be healthy and well.  Sure, there have been swings and roundabouts, but at the end of the day she is getting better due to us finding our own confidence to stand-up to ED.  We still have fortnightly weigh ins at the local Doctor and monthly appointments with psychologist and dietician.  Whilst her weight is not fully restored her state of mind is and that is a huge step in the right direction.
What a wonderful way to start my day by reading your update edengirl!  So very happy that you have reached this point, and your story will most definitely give hope to those families just beginning this journey.  I truly wanted HOPE that there was the possibility of recovery when we first began, and professionals were stressing how dangerous ED was and the high mortality rate.  I hadn't met any parents who were dealing with ED and had come out the other side from this terrible illness, and I truly wanted to hear from them that there was light at the end of the tunnel.  It took us a very long time to find this forum.  I applaud you for returning to give your lovely update, and congrats to you for all your HARD work to help your d to get where she is today. 
Sending all best wishes for continued good health and a smooth path ahead. 
It is good to not only hope to be successful, but to expect it and accept it--Maya Angelou
Thank you for sharing your positive success story. So helpful and inspiring. I can feel your delight through your post!  
I just have to say I love this phrase in your signature 
"When the plan doesn't work, change the plan, not the goal."
Will definitely keep those words and your story of hope in my head!
Thank you so much for your post it has truly given me hope. We are one week into refeeding and it feels like we are never going to get our happy outgoing d back. 
We have tears and a melt down after every evening meal and we live with the anxiety in my d eyes for most of the day but we persevere keeping calm and loving and she is now finishing meals so to read your post just keeps us motivated and focused. 
Out of interest do you have any advice on my d having these moments or any good calorific meals that worked for you?
My d absolutely loved Starbucks frappacinno. I long for the day I can buy her one. 
thanks again. 
Ortho7 I am so glad to hear my post helped you.  I was hesitant about posting.  I didn't want to come across as minimizing what others are going through but I so wanted to give parents what I longed for this time last year.  I knew how dangerous AN was.  I knew all about the mortality rate. I really didn't need a doctor to quote all the terrible statistics to me.  I could look in my d's eyes and see first hand how high the stakes were.  I needed encouragement.  I needed a shred of hope that we could beat this thing.  I was scared out of my mind..almost paralyzed with fear.  I just needed someone to tell me to keep focused...no matter how bad the last meltdown was.  I pray my post gives someone like you that encouragement!

As to your questions, I can tell you what worked for us personally- much of which we learned at UCSD when we attended the Family Intensive there.  For us, distraction at mealtime was the key.  It sounds so simple but it made a huge difference.  We had a basket that we kept near our dining room table.  It had trivia books, games, table top questions (https://www.amazon.com/TABLETOPICS-Family-Questions-Start-Conversations/dp/B000FFET52/ref=sr_1_8?keywords=table+top+questions&qid=1564082545&s=gateway&sr=8-8), stress balls etc.  We kept the TV on during meals, had the radio going in the background and distracted our d as much as possible with all this while she ate.  It really made a huge difference.  After the team at UCSD really showed us what our d was dealing with during her meals (all the ED voices screaming at her at once) it helped us to understand how to combat it.  Never again did we eat in silence, which is so easy to do when it becomes such an anxiety ridden ritual.  We kept all kinds of distractions going so eating became secondary really.  It was crazy uncomfortable at first but as we saw it making things easier on her it was a welcomed change.  I even noticed it helped my own anxiety during meal times.  It gave me something to do when everything in me was screaming PLEASE, PLEASE JUST EAT! 

Also, we followed UCSD's instructions and made sure all "Safety Behaviors" the d was doing to appease ED were monitored and eliminated.  Our d was really bad about playing with her food and basically smearing it all over the plate.  She also was adamant that one bite had to be left.  Up until we went to UCSD our thought was "Well, its only one bite.  She ate the rest.  Let's just let that bite go."  They taught us that this was actually a "Safety Behavior" she was doing.  It was just about the calories she was losing but about her feeling like this ritual had to be kept up.  We enacted a zero tolerance for "Safety Behaviors."  Every single bite had to be eaten or we didn't leave the table.  If she smeared her food, she got more put on her plate.  We basically did a "shake down" each time she left the table to make sure she didn't have food in her napkin or pockets.  It became not just about the calories for us but instead about ridding ED's control of her.  We were lucky.  We had some very bad days but eventually she started complying and these behaviors started disappearing. 

Every bite of food she ate was monitored.  She was monitored 30 minutes after every meal. In hindsight, she always wanted to be alone after she ate.  We were just so happy she had eaten that we would let her.  After we really understood ED's tactics, we stopped that.  She was with us after meals.  We kept the distractions going so ED didn't get that time with her to beat her up over the food she just ate.  Once the meal was over we immediately switched to another distraction.  I know it sounds crazy but it worked.  Little by little, the panic attacks after meals stopped.  I do want to stress "little by little."  This is truly a marathon.  Her brain has to have time to heal and that will only happen when she gets weight restored.  Until then it is all about gaining as much ground with her weight as you can. 

As far as meals, we pushed her pretty hard on fear foods and made sure she also didn't use that as a "Safety Behavior."  If we determined it was a fear food for her, I would incorporate it into the next weeks meals.  It didn't always end well but again, we were lucky.  She complied it most cases- especially with the distractions in place.  We also bought Benecalorie https://www.amazon.com/Benecalorie-Calorie-Protein-Enhancer-Unflavored/dp/B001W6RHOS/ref=sr_1_3?crid=2214MSLKW7KCL&keywords=benecalorie&qid=1564084294&rnid=2470954011&s=gateway&sprefix=benecal%2Caps%2C133&sr=8-3 that I heard about on this site and started incorporating it into her meals.  It worked very well in yogurt for us.  We really focused on a "small footprint" for her meals.  We added butter and cream to everything (soups are great to hide this in), lots of peanut butter, a caloric drink with every meal.  We found milk was a great place to hide cream.  We did omelets often (used Benecalorie in these).  Basically, we hid as much as we could while getting the calories in.  When I was at my wits end, I could pick up dinner at a fast food place.  It was less of a struggle, got in a great deal of calories, and also taught her that nothing was off limits. 

This worked for us.  I know there are plenty of parents out there that did not /does not have it as easy as we did.  I just encourage you to keep trying.  If something doesn't work with your d, be ready to go to plan B...asap.  Also, I think it is important to stress that it will not fix itself overnight.  Her brain has to heal.  It is a process.  One day may be a good day followed by 4 bad days.  I kept a journal and it helped keep me sane.  I could look back and see that we really were making progress.  It was a slow as running through peanut butter, but it was progress. 

I hope this helps some.  Praying for endurance for you all.  You can do this! 
Thank you so much edengirl. 
benecalorie sounds brilliant. We are based in the uk so are trying to locate somewhere to buy it from. 
I liked the ideas of distraction at meal times. It's common sense but sometimes it takes someone else just to tell you. 
We will put everything into practice tomorrow. We are under no illusion that this is a long journey but we have a good ED team that have been amazing so far and that are d trust which helps.