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

Welcome to F.E.A.S.T's Around The Dinner Table forum. This is a free service provided for parents of those suffering from eating disorders. It is moderated by kind, experienced, parent caregivers trained to guide you in how to use the forum and how to find resources to help you support your family member. This forum is for parents of patients with all eating disorder diagnoses, all ages, around the world.

Join these conversations already in progress:
• Road To Recovery - Stories of Hope
• Events for Parents and Caregivers Around the World
• Free F.E.A.S.T Conference Videos

Visit the F.E.A.S.T website for information and support.

If you need help using the forum please reach out to one of the moderators (listed below), or email us at bronwen@feast-ed.org.

Need to talk with another parent? F.E.A.S.T. parents offer peer support via:

eternalhope
I haven’t posted in a long time, as we have not had our happy ending yet. D is now 13 and is back in school after missing most of last year due to her battle with RAN. She is at a very low weight still, but vitals and labs are all in normal range. So we have 3-4 outpatient appointments a week, and she is closely monitored. I have found that listening to music helps me. Here are six songs that resonate with our family’s struggle if you’re interested in checking them out through YouTube or Amazon music (if you have it.) These songs give me strength: IZ- Somewhere Over The Rainbow, Gary Allan- Every Storm Runs Out Of Rain, Keith Whitley- I’m No Stranger To The Rain, Cat Stevens- Morning Has Broken, Louis Armstrong- What A Wonderdul World, and Rodney Atkins- If You’re Going Through Hell. Please reply with any songs that may give you comfort and inspiration and I’ll check them out and add them to my play list.
Quote
ValentinaGermania
Hi eternalhope,
nice to have you back again although I am sorry that your d is not really doing better. Do you need ideas how to add more weight? Her brain recovery cannot start before reaching a good weight. Do you have an idea why she is still on a very low weight?
Great that she is at least back in school. That gives you some time to relax.
There was a thread about music this summer but I did not find it yet.
My favourite one is "I´m still standing" from Elton John.
Tina72
Keep feeding. There is light at the end of the tunnel.
Quote
eternalhope
Good to hear from you Tina. I’m sorry to say that she is a super resistor. FBT and LSUYE and magic plate did not work for us. Neither has the revolving door of inpatient, which was most of last year. She simply won’t increase her meal plan. She wants to stay where she is. She was so isolated in treatment, she hadn’t talked to friends (her choice) in 7 months. In May, she was in a Children’s Hospital for medical stabilization. With so much treatment, she learned that she cannot be forced fed unless she is medically unstable, which happened in May. She got kicked out of an inpatient facility for non-compliance. She says she won’t comply if sent back. She was turned down by 5 top rated ED facilities due to her history of non-compliance. So she has learned how to eat enough to have heart rate, blood pressure and labs in normal range. She is not orthostaic, as she keeps up with fluids. So we are trying to show her a life outside of treatment. She is on meds, and has been enjoying her time back at School and with friends. We keep her monitored closely for any changes in vitals and labs. It’s not ideal, and it’s one step at a time.
Quote
seaglass
The Middle by Jimmy Eat World is our fight song
Quote
seaglass
Lyrics include ‘it just takes some time, little girl you’re in the middle of the ride, everything, everything will be alright....just do your best, do the best you can...’
Quote
seaglass
Also Christina Aguilera ‘The Voice Inside’ (although makes me cry)
Quote
melstevUK
I used to listen to 'You' by Fisher - a reminder of a mother's love.  Not an upbeat song but I found it incredibly comforting and it reminded me to keep fighting and never run from the battle.

That battle took eleven years which is scary for many to even contemplate - but we just kept putting one foot in front of the other and pushing through life until we got there.

Believe you can and you're halfway there.
Theodore Roosevelt.
Quote
Mamaroo
I listen to music by Imagine Dragons, put the whole playlist on youtube and listen to it while I work on the computer. When I'm in the kitchen cooking (and baking) I like to listen to Joel Osteen's podcasts for inspiration (these are really good: Be a rainmaker, Celebrate partial victories, Deep roots, Faith for the middle, Hit the delete button, It's not over, Overcoming weariness, Miracles out of mistakes, Recognising your value).
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
Quote
Torie
Someone posted this song video here years ago, and it still brings tears to my eyes.  As was noted by the original poster, it is unfortunate that ED families don't receive the community support that "casserole illnesses" bring.

-Torie
"We are angels of hope, of healing, and of light. Darkness flees from us." -YP 
Quote
ValentinaGermania
eternalhope wrote:
Good to hear from you Tina. I’m sorry to say that she is a super resistor. FBT and LSUYE and magic plate did not work for us. Neither has the revolving door of inpatient, which was most of last year. She simply won’t increase her meal plan. She wants to stay where she is. She was so isolated in treatment, she hadn’t talked to friends (her choice) in 7 months. In May, she was in a Children’s Hospital for medical stabilization. With so much treatment, she learned that she cannot be forced fed unless she is medically unstable, which happened in May. She got kicked out of an inpatient facility for non-compliance. She says she won’t comply if sent back. She was turned down by 5 top rated ED facilities due to her history of non-compliance. So she has learned how to eat enough to have heart rate, blood pressure and labs in normal range. She is not orthostaic, as she keeps up with fluids. So we are trying to show her a life outside of treatment. She is on meds, and has been enjoying her time back at School and with friends. We keep her monitored closely for any changes in vitals and labs. It’s not ideal, and it’s one step at a time.


It is so sad when they are in that merry-go-round and they cannot get better because they do not eat enough. What do you do when she grows when you cannot adapt her meal plan? Or did her body also stop growing?
It is good that she is back at school and has some normal life with friends. As you say, one step at a time. I hope you will see some change soon.
I send you a big hug.
Tina72
Keep feeding. There is light at the end of the tunnel.
Quote
eternalhope
Her growth has stalled. She is slightly over 5 foot, and based on my height and my husband’s, she should reach 5’4 if she’s getting the proper nutrition. Her period has also stopped again. She’s only had one since 3/21. She is in a better place mentally but the ED rules her thoughts. Part of getting her back in school is a distraction. She obsesses about what she is going to eat/counts calories. It’s all about control for her.
Quote
ValentinaGermania
Any chance to sneak anything in?
As you know she will not get better until her brain is fully nurished. All that ED thoughts, the calorie counting, the control about food will not stop.
I wish you could put her in sleep like sleeping beauty and she could be fully nurished to have a better start...
Tina72
Keep feeding. There is light at the end of the tunnel.
Quote
iHateED
It's good she is back in school and having a "normal" experience.   I agree with Tina, is there any chance in getting more calories in?  My D really wanted to be in school - she was 16/17 at the time and in junior year of high school.   She wasn't allowed to go to school in the morning without eating her full breakfast and I would pick her up for lunch with a sandwich and a smoothie.  She would have lunch in my car and then she was allowed to go back into school.  To say that she hated it is an understatement.  But it worked for getting in extra calories.  We would not be where we are today without the daily smoothies!  You've probably heard this before, but have you looked into UCSD one week family intensive?  It really was the reset button that my H and I needed to be on the same page and not back down to ED.  LSUYE wasn't really working for us until we attended their program and left with a great contract for eating. 

Hang in there!
Quote
Torie
eternalhope wrote:
She was turned down by 5 top rated ED facilities due to her history of non-compliance. 


Hmmm.  I wonder what would happen if you called 5 more.  It sure sounds like your d needs more help than you can provide at home.  I remember that you talked about attending the UCSD 5 day program earlier - did that happen?  Could it happen now?  There has GOT to be a top rated ED facility that could help, right guys?

She is so young.  And so badly in need of professional help.  Would you like help creating a list of providers to call?

Thinking of you. xx

-Torie
"We are angels of hope, of healing, and of light. Darkness flees from us." -YP 
Quote
Enn
Eternalhope,
I have been wondering how you all were doing
You and I joined ATDT around the same time. I am sorry things have been difficult for you. I hope there is some place you can get her into to get this moving forward. As for songs I like Katy Perry's "roar" it gave me the forceful push that I could do this hard hard job. A very powerful message.
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)
Quote
Mamaroo
eternalhope wrote:
With so much treatment, she learned that she cannot be forced fed unless she is medically unstable, which happened in May. She got kicked out of an inpatient facility for non-compliance. She says she won’t comply if sent back. She was turned down by 5 top rated ED facilities due to her history of non-compliance. So she has learned how to eat enough to have heart rate, blood pressure and labs in normal range. She is not orthostaic, as she keeps up with fluids.


I would say this is the hardest part of the refeeding process, since they are not ill enough to have an ng tube, but also not healthy enough to start recovery. They are in a state of limbo. In our case I used a lot of incentives and paid her for every day she completed her mealplan ($2/day with extra bonus points is she stayed on it for a week). For months she only ate to buy iTune cards. I baked a lot of her snacks (muffins, protein bars, bliss balls, muesli bars, bread etc) so I could easily make a small snack full of calories (and fat + protein). In that way she can't look at the packaging to see how many calories it has. 


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
Quote
Kali
This song used to make me cry but still has a message of hope.



Eternal Hope what a difficult trip you are having with your daughter, but she is young and you have time on your side...I hope school will help motivate her to keep her mind off the disorder. Is it possible for you to start adding some extra calories to her food...Benecalorie perhaps?

Kali


Food=Love
Quote
kazi67
Hope these few cheer you up a bit
Music can be so healing and has got me through some very dark days
The first 2 have special meaning to our family
Take 5 Relax and Enjoy :)

Helium - Sia
These days - Rudimental
Follow the sun - Xavier Rudd
Messages. “. “
Time to smile. “ “
Something in the water - Brooke Fraser
Send my Love - Adele
This is me & Never enough, soundtrack from greatest showman
If I could turn back time - Cher
Perfect - Ed Sheeran

Hope things improve with your d
I used the incentives/motivator strategy
Although I know it doesn’t work for all
Keep trying - keep feeding
Never give up on kicking ED’s butt out of your house!!
xx
Quote
NELLY_UK
Katy Perry - Lion is my song and for us all Firework.
That’s all!
NELLY D 20 bulimic since age 12, diagnosed in 2011. 20 months useless CAMHs,7 months great IP, home March 14..... more useless CAMHs.now an adult & no MH services are involved. I reached the end of my tether, tied a knot in it and am hanging on. ED/Bulimia treatmentis in the dark ages in West Sussex.
Quote

        

WTadmin