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.

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Enn

I want to share a bit of our story with all of you who are at the beginning. I know how dark your days may feel and you are doing a good job. You are caring for your child during extraordinary circumstances, ED and COVID. 

My D was diagnosed just over three years ago and it was just awful. I could not see a past my grief at all. I had overwhelming anxiety and PTSD. I clung to the forum for help and support. I read the forum with tears streaming down my face. I remember my first post sitting in my rocking chair, at about 3 pm that day and I hit "post" and sent my plea for help and understanding around the world and I could not believe that a real person actually replied to me!!! My heart was so full of gratitude so I bawled some more.

The great stories of hope, honestly did not help me. I felt more upset that I was not there. I was envious, to be honest. I did not believe that others really had been in my place. I felt as if no one had it as hard as I did. Ha! I learned quickly that it was and is hard for all of us. No one's story is harder or better/ easier than anyone else's. I did not wish to be an ED hero. I just wanted my d to get better. It was that simple. 

As I learned quickly how to "see" and understand this illness in all its topsy turvy ugliness, I began to know that most did get it. Sometimes there was this weird sense that many of you were actually in my home. The shame and worry and fear I had, people here really did get it. That was when I felt more empowered and shared more so that I learned more and could get ahead a bit. I was fearful of the stigma and having fingers pointed at me. I already felt guilty that I let ED thrive to a degree.

What I came to realize is, not that we are just in this together, is that there are a lot of similarities in our circumstances as well as differences and I learned that when I re- read some advice given to me  at different times in the journey, I could apply it differently and could see it in a new light and it was always helpful, always!! I learned that somethings did not work here, and that was ok and that I learned what the ED in my home required was different to another's experience. There is no right answer with ED. Nor is there a wrong answer with ED. My D has AN and so of course that is my experience and my point of reference today. 

A bit of our story: D was almost 12 at DX. Admitted to IP one week after DX. In IP for 3.5 weeks. WR set at 40% for age. Took us 6 months to get there and found that another 6-7 kg or 50% plus helped and of course time. Periods came at 8 months into it and about 2 months after the first WR (ie 40%). She started Olanzapine for two weeks - did not work for her. On sertraline and did calm her a bit. 

She stood all the time and had OCD traits as many of our kids do. We had to tackle fear foods from day one, as everything was scary to her. D responds well to authority and so I learned to tell the team in advance what I needed from them that week ( time for smoothies so the team told her it was time for smoothies) she then would have it- grudgingly but she did it. She was compliant for the team and hard on me. We had violence too. I think you need to know that can happen.  I did not know that and felt so shameful that I did not ask the team for help. My H did not get it and so I had to teach him to follow my lead. That was quite difficult as I was grieving and taking care of d and having to teach him as well was an extra burden. 

D had two older sibs a sister 7 years older than her and a brother 4 years older. I know they suffered. I did not pay enough attention to their needs at that time. I hope I am doing that now though. I did not have enough of me at that time for even me, sadly enough. I don't know how I could have done it differently. I could not practice self care. I was consumed by ED. 24/7.

I added cream, and oils to everything. She gained slowly sometimes and fast other times. She did fight the food, but ate, as she did not wish to disappoint her doctor. Weird I know. When she threw food, we replated it. We had to be silent and not look at her when she ate. I sometimes had to leave the table as her anger at food was directed at me. H sat with her quietly to ensure she ate it all. Those were hard days. Not gonna lie, I did not think they would end. 
How did we get her to sit? This is how  https://www.aroundthedinnertable.org/post/trying-to-get-her-to-sit-8528651?pid=1296348023

When did we see her brain get better? About 9 months into it and about 3 months after the first WR and remember it was the time we as parents put in to re teach her about food and manage her fears every single day!

At one yr she was so much better. Then next year there were blips in the road. She did start ditching food at school and tossing her drinks, she lost  weight and I knew what was going on and could not prove it until I caught her dumping her drinks last June or so. This is a reminder that you have to keep circling back when you see wt loss and behaviours pop up. I know it is hard and you need a break. Ensuring you are ready for the ups and downs, makes you more resilient. 

She is 15 today! She came bounding down the stairs a big happy grin on her face!! She asked for eggs and toast for breakfast. 
She wants pizza soup for supper. This is a soup that portended her ED. We had gone to a cooking class  one month prior to her diagnosis. (yes I know in retrospect that was ED 100%). She did not want the turkey sausage in it she did not want the cheese in it. She did not want the cheese sandwich with it!! 

Now that is her favourite meal. Cheese in it and thick slices of bread slathered in butter! She is happy. She has a life outside of ED.  I am so grateful to be able to witness her life as her mom and to be able to help her when and if she needs. 

I wanted to share this so that you know, it is a long road and I don't know if she is  fully recovered to be honest. (crossing fingers here). I think there is still work to be done as she grows and matures. I just know things are better and that I am optimistic for her future. That she will continue to not be scared of food and that when there are blips ( I am sure there will be) that she and I can work on it together.  

I post this here today so that you may find something that helps you. 
❤️ 

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)
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Lovemygirl
Thank you for your wonderful story.   Warts and all!  It is so great to hear this , and also good to hear not to let your guard down.  Ever.   
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Kali
Thank you for sharing, Enn, and happy birthday to your beautiful, wonderful, and smart daughter.

xoxo

Kali
Food=Love
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Torie
Really great post, Enn!  Happy Birthday! xx

-Torie
"We are angels of hope, of healing, and of light. Darkness flees from us." -YP 
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MKR
Happy birthday to your girl, @Enn

Thank you for sharing your feelings at the time, they resonate.

What you didn't mention is the resources you have built up since. Because you seem to be able to pull out of the hat the right article or study or blog. 😀

Most of us have had to EDucate ourselves. But few had gone on to include knowledge beyond what applied to their own experience. We are so lucky to have you!
Mum's Kitchen

14-y-o "healthy living" led to AN in 2017 and WR at 16. Current muscle dysmorphia.
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Enn

Thanks all. @MKR I like research articles as pertains to medical issues in ED and which correspond to questions by our forum members. Those tend to stick with me more. I am glad if they give people the info they need. 😊

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)
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teecee
Thanks Enn....we have past a lot of your mile stones on our journey so I’m hoping that this next year we can be completely free of ED too 😊
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Foodsupport_AUS
Happy birthday to your D. You have done an amazing job with your D. Here's to an ED free future. 
D diagnosed restrictive AN June 2010 age 13. Initially weight restored 2012. Relapse and continuously edging towards recovery. Treatment: multiple hospitalisations and individual and family therapy.
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PleaseEAT

Happy birthday to your gorgeous d! 
well done Enn on all your hard work, you d is so lucky to have you
thank you for sharing your story and Thank-you for your support to all on the forum you  always have encouraging supportive  words to say and lots of information to pass on when we find ourselves looking for help 
all the best to you both on this special day and for the future 
x

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PurpleRain
Happy birthday to your D! Your posts are always useful and compassionate, thanks for sharing your story, it gives me hope. My D is 14 and a half years old, 14 months from dx , 10 months restored to her growth curve, so I know we still have a long way to go but she's doing well. It's great to hear your experience and be prepared for the blips and bumps in the future.
Enjoy today!
13 yo d started to eat "healthy" September 2018, she had a growth spurt a bit later, followed by tummy bug. She started restricting breakfast and school lunch in January 2019 (that we know). We succesfully refed at home.
I have found inner strenght, patience and compassion that I did not know I had.
Never retreat, never surrender
keep feeding
 
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LaraB
Thank you for sharing. I hope you had a lovely day. Happy birthday to your daughter. Your kindness and counsel to me over the last year was a huge support. Thank you for being so generous and caring. 
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melstevUK
Happy Birthday to your d Enn!  And thank you for sharing and letting others who are new know that they are not on their own in their despair at the beginning of this horrendous journey.
I am so happy that your gorgeous d is doing well.  There is nothing more wonderful than seeing your sick child start to enjoy food and eating again.  It takes most families a very long time to get there and they need to know that. 
I am also glad you found a team who would be guided by you and do what you felt was needed.  It is not rocket science but it can be so difficult  to get through to some clinicians that if they can support the parents to find their way through and back them - then everyone is on the same page.   

Really happy for you all.  Heroic parenting!
Believe you can and you're halfway there.
Theodore Roosevelt.
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Bobs

Thank you so much for posting your D’s journey. Also the timely reminder for me to keep watchful as life gets back to some sort of normality for us.

This forum has been my lifeline along with a private psychiatrist I took my D to see over a year ago when she was self-harming and suicidal and I had no idea she had AN.  She saw straight through my D and into the eyes of the ED! 

I wish your D the most wonderful of birthdays and hope there is cake!

15 year old D. Started to feel low summer 2019. Fall out with friends October 2019. Depressed, self-harming and suicidal from January 2020. Diagnosed with AN July 2020. Slowly coming out of it and feeling hopeful for the future.
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joanne34
Happy birthday to your daughter, hope she has a fantastic day!  Thank you for sharing this, your post is very positive, reassuring and uplifting xxxx
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Ocras68
My daughter shares a birthday with yours; turning 16 yesterday.  RAN diagnosed 20 months ago.  Made tremendous progress in the first year, with blips along the way of course.  She’s physically healthy now, and so much happier than she was, but is a bit stuck, not getting any worse but not getting any better.  ED thoughts are still there, and being in lockdown hasn’t helped.  Your post was just what I needed.  Thank you so much, Enn.  It has given me hope that all we need is more time.

I hope your daughter had a truly lovely birthday.

Xx
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Enn
Thank you all for the kindness extended to my D. She did have good day. And YES she ate a good sized slice of cake. Happy birthday to your d too @Ocras68 hope she had cake! 

Just another  few thoughts if I may. Im not an expert at all, I am just a mom who had ED forced on her too, just like you. So please note I am not an authority- so take my words with a pound of salt. 

 What  I have seen is this: As you go through this journey there are changes that happen to you  too. How could we not be changed? How we see the world may have changed. When our kids mature, we need to examine how we will interact with them. I am at a point now that I need to give D more autonomy over her food. I am scared to do this. And I have to. She needs to learn how to feed herself. I can support and guide. I have to teach her to not restrict with stress. Then she will need to internalise that for herself. She needs to know that if she is sick she will not be able to have the life she so desperately feels she is owed. 
I read those posts on how to manage their futures as adults: university, travel, boyfriends, girlfriends, sex, drugs and alcohol etc.. I need to think of plans for different eventualities. The path you are on now will likely change. You will need different skills and different resources as you move through refeeding, WR, giving some control back (how and when) then autonomy. And at the same time, balancing all that with the growth maturation, life adjustments that they all go through. It is parenting on steroids when we add ED. 
We are forever changed. I pray that it is for the better. ED has changed me. It was painful at the start, as change usually is,  and now I am so grateful. I have learned a new skill set, become more firm, and compassionate as a mom and also in other relationships. I cannot look at a child who is eating a treat without knowing how wonderful that is. What a blessing it is to hear your child say they like that food, or that they took a nap instead of running around the block. That they smiled, even if not at you that they let you hug them. That they did not hurt themselves. That they do not feel so sad all the time.  Others cannot see that. Their perspective is not the same. I truly wish we did not need to know ED so intimately to be so grateful for these things. 

Just like COVID-19 restrictions, until we have lost something so ordinary, do we know what we truly had. I just wish we didn't have to go through it to comprehend. Gratitude is a very important word for me. I am thankful to all of you for being so brave to share your stories and for your kindness to everyone here no matter what stage you are at.  One word from you  can really make a huge difference to someone and you may never know how you have  helped them. Yet you all give anyway! You are all inspirational to me. You fight long and hard every moment of everyday, to take care of your child and then you give back to the ED world to share what you have learned to make another's plight more informed. 
Sending kind thoughts to everyone. 
❤️ 🌹
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)
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Jeneldridge
Your post was just what I needed to read today. Thanks so much for sharing, and happy birthday to your sweet girl! 
15yo D diagnosed with AN-R Jan 2020. Hospitalized since late January. Almost fully weight restored as of late May; ED voices remain very strong.
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