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

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Adele47
To the wonderful and helpful folks on the forum;

I hope this update offers hope for those still in the trenches and early stages of ED. I haven't posted in a long time, but lurking about on the forum.

Some of you may remember our story, my grand daughter was 12 in 2013 when she started restricting, there were some signs the late summer and fall before severe restricting began when my d took her for an evaluation at an eating disorder clinic where they live, the child was assessed and the parents were told by the professionals there that they didn't think she had an eating disorder, they were so wrong.

That fall my grand daughter had just begun 7th grade, no one knew she was not eating at school as she began to lose weight.  By Christmas 2013 she was refusing all the foods she used to love, by New Years she wouldn't eat any of the foods the family was eating, her behavior was becoming more and more erratic and violent towards her parents and siblings.  Thus began a search for help as now the parents knew she had a raging eating disorder.   

The next 5 months of 2014 were a living hell, she was hospitalized, she was in an outpatient program, nothing was helping to get her to eat and gain weight.  I had begun researching and found my way to this forum,  we read everything we could, my d tried to re feed at home but alas this girl's demon ED was formidable, nothing was working.

By May of 2014 the family decided to go to the UCSD 5 day intensive in San Diego, we all went, it was good, great information and support, but when the family returned home ED really put his foot down and completely took over this child, she wouldn't eat or drink and after a few days of this the parents knew she needed a higher level of care, so off she went to ERC for adolescents in Denver, insurance wouldn't pay, we had to come up with the money anyway we could to save this child.  My dear husband sold some retirement shares to pay for this, God love him! 

After 30 days inpatient and 3 weeks day treatment with my d there for that part, my grand daughter returned home, she had to be tube fed while inpatient to get enough calories in her to get her weight restored enough.     My d had worked on a treatment plan before discharge from ERC and part of this plan was to put in place a team of a dietician, a psychiatrist and a primary care doc who put in place an order for a service to come to the home and insert a feeding tube if my grand daughter refused to eat!

So here we are over three years later from onset of RAN.  My grand daughter now eats pretty normally and freely.  I sent up a Xmas box of homemade goodies which she loves and enjoys, but three years ago I remember her saying she won't eat any of Gramma's food, that hurt!

I have to say it was long and slow that first year after coming out of ERC, it was very hard for her to eat, very hard, she's so brave.  She has told her Mom that she could not have done it without the threat of the nasal gastric tube, it was the leverage she had to have, we think because she had that in treatment she didn't want that again, this time she KNEW food was going in no matter what.  

She suffers from depression and anxiety and is on medication that helps her, her parents chose not to put her back in school as the peer pressure and stress she is not ready for so she is home schooled and has a tutor. 

Is she completely recovered?  She appears to be from severe RAN,  meaning she eats pretty freely and has no exercise compulsion, she won't eat more than she is required and there is a little bit of calorie counting going on, she enjoys food, I can see that, she likes my food as I make her favorites when she comes to visit. She is still monitored, 3 meals, 2 snacks, she is still blind weighed. We are all concerned about any back sliding, she can't afford it, we can't afford it, and we believe still that food is the medicine.  There have been no major setbacks with weight loss even when she's been sick.  

The raging is gone, the ED possessed child seems gone, the hitting and kicking and swearing and name calling at her Mom has stopped, we never bring these up and I don't think she remembers, she was very sick not just starving but like a person with dementia which starving would cause,

So I just want to say to those fighting ED in the trenches, the people were right here, food is the medicine and by all means necessary the food and calories have to go in and stay in and slowly, slowly the starving and sick start to come back.   I wish my grand daughter didn't have the complications of depression and anxiety, but I do believe she can recover completely from ED.

The whole ordeal certainly took it's toll on this family, my poor d and her h have enough with a disabled younger daughter.  They have all needed help,  and support.  But we are all just so happy my grand daughter is alive and eating, it is miraculous when it begins to change.   Takes time. Lots of the regulars here told us it takes time and just keep feeding, even 6 months after she was back from ERC it was much easier to get her to eat.  Now it appears effortless, imagine effortless eating with an anorexic, it's a beautiful thing to see. We never thought this would happen.
   
Adele47
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mamabear
You know I've been cheering for you guys from day 1!!!!!
Love to you super grandma!
Persistent, consistent vigilance!
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momon
Hi Adele,

I have tears of joy for you and your family, remembering all your family went through.  I know your friends from this side of the mountains will be beyond delighted to read this. Thank you for telling us how she is doing. You all are a model of love and unity ...and special applause for that husband who I believe is a step grandpa.! Step-relatives rock too! What a story of love and commitment and persevering till you all got things lined up as needed, and all that time the whole family did the dreadfully hard work required. Bravo!
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Torie
Saint Adele!!!!!  So great to read your update!  I think of you and your d and her d and the whole gang so it is great to know what kind of thoughts I should be thinking! (Happy rejoiceful ones, yay!)

Such a tough, tough road your team has traversed.  Makes me proud to know you.

Please give your d my best. xx

-Torie  P.S. In your update you casually mentioned "when she comes to visit," which reminded me how sad it was when she couldn't go to your house that first year.  Such a long way you have come!
"We are angels of hope, of healing, and of light. Darkness flees from us." -YP 
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OneToughMomma
Thank you for coming back, Adele, and letting us know how your beautiful granddaughter is doing.  It's really wonderful to hear such good news.

You are an example to us all.  I remember the lengths your family went to during this war against ED, and I was so impressed.  Your approach was unique because of the special situation, but you all pulled together and did your part.  Truly an inspiration.

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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ed_newbie
Adele, thank you so very much for this post.  What an amazing strong family you have! 

My d was diagnosed RAN about a year ago also at the age of 12, is doing well with her recovery, also suffers from anxiety and depression and is on medication. I am hopeful that with therapy and consistent nutrition things will slowly improve over time. 

Wishing your granddaughter much health and happiness in the future!

"Lineage, personality and environment may shape you, but they do not define your full potential."    Mollie Marti  

ed_newbie

15 yr old d diagnosed with AN late December 2015 at the age of 12 after a 23 lb weight loss during prior 3 months. Started FBT/Maudsley at home on Christmas Eve with support from amazing local nutritionist specializing in ED and trained in FBT. WR Feb 2016 and pushing our way through puberty and rapid growth.
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sk8r31
Oh Adele...you don't know how much your post makes my heart sing!  Truly, truly so happy to hear this update, and how far your granddaughter & family have come in battle against ED!

I'm in awe of you, your d and her family, and how bravely you have all fought for your sweet granddaughter to be free of her illness.

Recovery is possible; there is hope.  With this post, you are giving hope to those still in the trenches.

Keeping a watchful eye on your gd is still important; with the teen years, and transitions, there can be a bump or two in the road ahead...BUT...she is well, & you & family have the resources and knowledge to help if needed.

You guys all rock.  So very happy to hear this update...may 2017 be a wonderful year for you & all the family.

Hugs,
sk8r31
It is good to not only hope to be successful, but to expect it and accept it--Maya Angelou
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Adele47
Thank you all so much for your replies,  I still can't believe I get to write this.  There was a time deep in the madness of ED we thought she would never get better.  My d was told at ERC that my gd was one of the sickest they ever saw! Ugh!

I was recalling when the two "angels" from this forum came from the western part of the state and drove over the mountains for 5 hours to spend the weekend helping my d with the re feeding of my gd, this was before her going to ERC or UCSD, they witnessed a raging demon possessing her and her running around refusing to eat, she had grabbed a burrito that was still frozen that was to be her lunch and ran out the back door and threw it over the fence and it broke a neighbor's window, this was par for the course at the time.  During the worse of ED's reign the police were called a few times, once when I was there my gd was running through the house screaming Gramma's trying to kill me, she would try to lock herself in the bathroom, she would run out and grab and destroy dishes, other kid's toys and break them, she would wail so loud the neighbors heard her, she was insane and completely possessed by a monster starving her to death.  I have never seen anything like this, had no idea and at the time I worked in behavioral health!

There were a few other "charming" ED moments while the angels were there, ED hated them for being there and showed it.  We can laugh about it some now!  Of course there was the chicken dish the angels made that ED called something like "god damned chicken crap" as I recall.  I think today she would enjoy that casserole.  We had some funny posts around the chicken crap casserole on the forum at the time, humor helped.

Feels good to know we had our support and friends from this forum and still do.  Mama Bear from the beginning you have been a cheerleader and so much help to my d.  I hate ED and her family were a great help. Torie, momon, Toothfairy, One Tough Momma, and the angels from the west. So many more.  Thank you

PS Yes my h is a step parent and the only grand father my grand kids know. He helped so much and was teachable about EDs. I am lucky to have him.  We married 16 years ago, my first, his first at 50 years old.  I had been a single Mom since a teen with my d.  Hopefully not TMI !!
Adele47
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mnmomUSA
Thank you for that update!  I'm glad that things are going in the right direction for you and your granddaughter!
D, age 18, first diagnosed March 20, 2013, RAN, at age 13 Hospitalized 3 weeks for medical stability. FBT at home since.  UCSD Multi-family Intensive June 2015. We've arrived on the other side.  :-)  D at college and doing great!
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iHateED
Oh how great it is to hear from you again Adele.  You and your family continue to be in my prayers for good health and happiness.  Please pass on all good wishes to your D and her family and let them know how incredible you and your family have been these past few years.  For me, even typing about things that happened in the early days (like smashed blenders and thrown food at the walls) still brings up a little PTSD .... but your story of the frozen burrito still brings a smile to my face.

Happy 2017 to all of you [smile]
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