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

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midwestmom_USA Show full post »
Hi Hope,
I would suggest that you open a new thread for this good question as more parents will read it than with that titel that is more about stories of hope and about recovered patients and not so often top of the list of themes.
Keep feeding. There is light at the end of the tunnel.
Hi, Tina72,
 Great idea, I am opening a new thread to gather ideas...
12 years son, diagnosed AN 03/18, ip one week, residential 5 weeks, IOP 7 weeks, doing FBT since 11/18.
It feels like forever ago that I first came here, yet I remember it like yesterday. 

My 13 year old daughter was diagnosed with restrictive anorexia and was desperately ill.  It came out later during counselling that she had started restricting when she was only 8 or 9 years old, and was fully anorexic by the time she was 10 (2011).  But when I had expressed concern about her weight to the family dr he simply said it was ok, she was stressed (her father and I had just separated) and that was why she wasn't eating.  Three and a half years later and with another doctor she was diagnosed (Oct. 2014).  She spent almost a month in the Hospital for Sick Children in Toronto, then we started out patient therapy in our own city.  I stopped working, pulled her from school and re fed her full time for three months, taking complete and total control over her food.  Once she gained most of what she needed to be on the low end of "acceptable" she went back to school 1/2 time...and started to loose again (April 2015).  I asked that she be put on waiting lists for Day Treatment.  She was only in grade 8, she was 14 and looked like she was still 10.
I found out she had osteoporosis and heart problems because of AN.  I became a dictator about food.  She was stubborn, but she got that from me.  Most of the time it was ugly.  I'm sure my neighbors thought I was torturing her, but I promise I was only re feeding and stopping her from exercising.  Her mental health deteriorated, she tried self harming, ran away from home, talked about killing herself daily.  Her father wanted nothing to do with treatment, packed up and moved to the other side of the country.  We haven't heard from him since.  Honestly, it been easier that way.

I finally got the call we needed in June of 2015, she started day treatment at Sick Kids the day after her grade 8 graduation.  Ten hours per day, five days per week, plus three hours per day traveling.  Everything else was placed on hold - I took an extended leave from work, my 10 year old son went to live with family friends, I spent 10+ hours a day in another city waiting to be needed at the hospital, we had no life outside of the eating disorder & the treatment.  Gradually my daughter returned.  She gained weight, and got her first period!  She started talking, and laughing.  We spent ten months in day treatment.  Looking back now, they were the hardest and most worthwhile months of our lives.  I learned SO MUCH.

I know, and she is now able to say, she is alive because I wouldn't quit.  Mothers (and parents together) are tougher than eating disorders, once we make up our minds to be.  

My daughter returned to grade 10, and started attending the school where I teach.  She needed more support at first...for a long time.  It seemed any time I let up at all, or wasn't there she lost weight and quickly, at one point loosing three pounds in a week at camp.  Gradually though she started eating just because she was told to, then because she knew she needed to.  Last summer she worked at a residential camp for three weeks, and came home 0.4lb heavier than when she left!  I finally started believing she'd beaten it.

She's 18 years old now and in grade 11/12.  She has little memory of what life was like for the worst 18 months of AN.  I'm glad for that, she shouldn't have to relive it.  She struggles with her short term memory still (it seems it won't repair itself), will always have osteoporosis and some issues with her heart.  She never got hunger cues back, so she eats on a schedule.  Just this year she started on medication for anxiety and it seems to be helping.  She takes dance classes again because she enjoys it, but no longer exercises compulsively.   She has friends, and this year joined a club at school.  She's going into the medical field - not to treat ED but for occupational / physio therapy and genetic research.  She works with adolescents with significant intellectual disabilities (she's their lunchroom helper.  When she first started school in grade 10 she started eating lunch with them because it was the "safest" place in the school.  These student don't judge and they all eat their whole lunch!) She's just won the local science fair and will soon go to another province for the national science fair - and as hard as it is, I'm letting her go alone.  She needs another year in high school because of the time she lost to AN, but she has her life back, and so do I.    

She's been weight restored and out of full time treatment for three years now.  I liken it to "remission", I don't know that our children will ever be cured, but it's not the first thing I think about when I wake up, or the last thing before I fall asleep.  Her brother lives with us again and is happy and well adjusted.  I got married last month to a man I met towards the end of her treatment.  He knew what he was getting into, and from the start wanted to understand and be involved.  When we married, my daughter chose to take his last name.  She has come to terms with the abandonment of her biological father, and she treasures her relationship with her step-father.  It's a busy, chaotic house with five children, but it's happy and filled with laughter again.  I relish in the normalcy of things - arguments with a teenage daughter about curfew and homework! and having nachos or pizza and chips with a movie.  

If you're still in the middle of ED - I'm so sorry... I remember another mom greeted me here with the words "welcome to the club no one ever wanted to belong to.  We'll help you get through it though."  and it's true.  When you feel -and are - isolated, remember we are here.  We are the ones who get it.  When you want to give up - DON'T.  YOU are what is most likely going to pull your child through this.  When you think you've failed - you haven't.  ED is mean and spiteful and powerful, but you CAN be stronger, especially when your child can't fight it.  Every morning is hard - but every morning gives you another chance to fight ED harder and better than the day before.  

Dr, Boachi from Sick Kids once told me something very wise:  If your child had cancer, no one would ever question how you are treating it.  If you held her down to give her medication, no one would think twice.  If it took you three hours to get the medicine into her, you'd do it.  If you needed to stop working to be by her side, people would expect you to do that!  If she didn't want to go for a treatment, the neighbors would come to help you put her in the car to make her go to treatments.  But because society, and our friends and our families don't understand, because they think your child has a choice in her disease, they do question, and you question yourself.  DON'T.  Your child is more likely to die from complications of her eating disorder than most childhood forms of cancer.  So FIGHT IT with everything you have.  

It CAN be beat.  After being anorexic for more than five years, my daughter is living, thriving proof that it can be beat.
Lone parent of 14 yo RAN daughter, compulsive exerciser,  RAN for at least 4 years, diagnosed 10/14, IP 28d in 11/14, weighed less than 70% IBW before treatment started Now 95% WR, has severe osteoporosis (delayed growth / bone age & puberty by more than 2 years) & mitreal valve prolapse & regurgitation (heart valve loose & blood backwashes!) b/c of anorexia.  Waiting and hoping for Day Treatment.
Thanks for the great update and post. It gives so much hope to see that it works.
I especially LOVE what you wrote Dr. Boachi said to you. That is so true!!!
Keep feeding. There is light at the end of the tunnel.
teach4life, thank you for that lovely update!  So very wonderful to hear how well life is going for your d and for you!  Truly, you have done hero parenting; hats off, and enjoy all the sweetness of life now, and the joy that comes from your d living life fully and to her potential.  I know it will give so many others hope that recovery is possible.
It is good to not only hope to be successful, but to expect it and accept it--Maya Angelou
This is lovely to see. And so happy for you all. 
Thankf for sharing this and hats off to you! Great job, she is so lucky to have you in her corner!
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!   You have no idea how much I needed to read this today! 
Thank you for taking the time to post such a detailed account of your journey. It is really great to read how well your d (and the whole family) is doing now. Thanks for sharing!
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
I hate it when I cry at work. 🙂
What a wonderful, inspiring story. Thank you for sharing and best wishes to you all!
Brought tears to my eyes. Thank you so much for taking the time to share your journey. So glad your daughter is doing better! 
It is with so much relief and excitement that I read this request and realize this is my family ... I remember perusing this website in the toughest days of treatment and feeling so hopeless. I didn't post here because I didn't think I could receive much help here. But I benefitted from reading other's stories and posts. 

My daughter was in the 8th grade when we realized she was struggling with an eating disorder. She never got to a scary low weight but that is not because her behaviors and mental state were not extremely serious. I think the focus on low weight as the sign of severity can be misleading. 

We did Maudsley and that was very difficult. We are a divorced family and while from the beginning I was relieved to hear that there was a treatment that works, my ex was skeptical and uncomfortable with Maudsley throughout. Most of our therapy sessions were spent trying to get my ex on board. 

My daughter threw food in the trash can in secret, got others to eat her lunch at school, lied to us when she had never done so before - totally out of character for her. She was cold, tired and hardly ever smiled. She isolated. She thought about suicide. She never did anything, thank God. She cut a few times. 

Eventually the therapist said that because my ex couldn't follow Maudsley, we shouldn't continue with it. We did our own, adapted version of it. 

Today she is fully recovered. She has maintained a healthy body weight and balanced eating for over a year. She is cheerful, has lots of new friends, and engages in many activities. We are still close and she opens up more than she used to, but she is also becoming more independent. 

There is so much hope! And even if your journey isn't text book, there is so much hope. Keep trying.
Update on my daughter's recovery to give hope to those who are still struggling.

By no means is my 18 year old AN out of the woods completely but she is making small strides every day. Diagnosed at 14, due to the rapid onset of the disease (diagnosed and hospitalized within a week), she was the most severe case her therapist had ever come across in her 15 years as a therapist. Within 8 months of diagnosis,she was referred to Ontario Shores (in Canada) - an adolescent residential treatment facility reserved for the most severe patients in the province. It saved her life and it saved our family.

She was discharged a year later and it's been 2 years now and she is doing well. She has maintained her weight, graduated high school with honours and a scholarship and is 1/2 way through her first year of university. She is living on campus but I see her once a week to take her to her amazing therapist (who also had a HUGE role in saving her life) and although she still has numerous anxious moments and an occasional panic attack - she is getting better at dealing with them. She has started to advocate for herself and is attempting to put herself out there with her peers. The perfectionism and self-doubt will likely always be there but she's working on it. She attends an ED group on campus, sees a dietician regularly and has an anxiety counsellor for her academics. She is now a vegan but her therapist assures us that is pretty normal for girls in the recovery process.

We are still dealing with the impact of her disease on our family and she has a tremendous amount of guilt for everything she said and did to her father & I and her 2 siblings - especially during the height of her illness. Her younger sister is seeing a therapist herself now to help her deal with her negative feelings towards her sister. She resents what the illness did to our family and I cannot blame her for that. We are taking baby steps.

The two most important things I think I did in her recovery is 1) realize that she needed more help than I could give and that I couldn't fix it and 2) attended an EFFT session (Emotion focused family therapy). I attended a 2-day training session while she was in hospital the 2nd time and it changed everything around how I talked to her and how I saw this disease. I stopped trying to lay blame on her and understood that I really needed to validate her feelings in order for her to know I cared. Even now, she continues to be the one doing all of the hard work to recover - and my role continues to be the one she leans on when needed, someone to listen to her and hug her and tell her it's okay to feel the way she feels.
For those of you still in the depths of this, all I can say is have hope, be patient, be an advocate and never stop loving your child. It is not their fault and it isn't yours either (something I took a long time to accept).  It's going to be a lifelong journey for your child but for us, the journey is getting a little bit easier - one baby step at a time.

God Bless all