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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cindyj27
Hello, I am new to this forum - I have a 16 yr old daughter who was dxed with AN about 3 months ago. I had noticed her weight loss and change in eating habits but didn’t pay it a lot of attention because she often goes through similar phases. She was the one who came to me asking to get help and has so far been entirely compliant and motivated to recover. She has “bad days” and struggles, especially with weight gain (has put on about 10 lbs since starting treatment), but usually talks about how she is feeling and will often ask for support/reassurance that it’s ok for her to eat and she needs to gain weight to be healthy. She used to have problems with purging as well but that has stopped completely and she will voluntarily come sit with me after meals if urges are high; we play games or watch movies until she feels better. Her meal plan is high but still being met (although sometimes she eats very slowly.) The point here is that I feel like she can be trusted, but the therapist we currently see is pushing for us to be what I would view as more controlling towards her and constantly monitoring. She wants us to watch her in the bathroom, monitor all meals and snacks, monitor her weight at home, and not give her any say in what is served at meals. I would understand this if she was trying to sneak behind our backs and use behaviors, but I don’t feel that this is necessary as she is working hard towards getting better and comes to us immediately when having ED thoughts and urges. I don’t want her to feel like she’s in prison or she’s done something wrong just because she has an illness. And I don’t see a reason to keep her out of the kitchen. She enjoys cooking and doesn’t attempt to control what I put in the family meals (i.e. I don’t have to hide the extra calorie items I add to her food because she knows that it will help her restore weight and that is good for her, even though it might be scary at the time). Her weight is increasing steadily according to her weigh ins at therapists office and her bmi up to about 14.8 from the 13s at her lowest point. Says she is feeling “much better” and is up during the day doing things instead of staying in bed like before. She seems much happier+ more energy and the color is back in her face, she smiles more and is getting back into her hobbies like art and guitar now that she is having proper nutrition. She has her share of struggles but is making great progress, and when we brought up the therapists suggestions with her she looked a little hurt and asked us why she (therapist) thought she would try to sabotage her own recovery. What are your opinions around this? 
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jcutch

If I could go back in time I wish I had the advice of your therapist. I think it is wonderful that your d is asking for help and coming to you for support. And the weight gain is obviously a positive. I have learned, however, that you CAN NOT trust this disease. Separate your d from the disease. It makes them do and say anything. In this case, I would trust the advice of the therapist and closely monitor everything

 

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Foodsupport_AUS
Welcome to the forum. One of the unusual things about eating disorders, particularly anorexia but also some others is the apparent lack of concern of the person with the illness towards their health and well-being. It is call anosgnosia. Many will commonly deny they are ill even when on death's door. Your D sounds very unusual in being compliant at all however over time I suspect she will struggle more and more with this. Ideally she should be gaining at least one pound per week, preferrably 2lbs. There is evidence that the faster weight goes on long term the better outcomes will be. She is severely underweight at present with a likely need to gain most likely at least another 30lbs. 

If you can truly get this sort of weight gain happening without "controlling" things then all is well and good, it is not however the experience of the vast majority of parents with a child with ED. 
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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Barberton

cindyj27,

You know your daughter best. But, EDs do have a way of fooling everyone. The person suffering and the caregivers.

Like you, I let my d have a lot of autonomy over what she eats, cooking, etc. But, I also watch and monitor her behaviour very carefully. So even if you really, really want to believe that your d is being 100% truthful and honest with you about her behaviours, you are in charge and you need to stay in control. Most parents here will tell you that their children have benefited from strict parameters. Think of it as holding on to a rope to let your d climb up a mountain and having to pull it back in or let it loose. When I have had to wind in control from my d, if she flared up in anger I knew it was the right thing to do because it meant the ED was under threat. When she argued and tried to convince me I was wrong, I simply said, "I think it's best we do it this way." Don't get into cyclical arguments with an ED. They go nowhere. 

I know the advice from the therapist sounds crazy, but EDs manipulate. On the up side, it is super that you have been able to help you d gain weight and are there to help her. Keep going!

D fell down the rabbit hole of AN at age 11 after difficulty swallowing followed by rapid weight loss. Progressing well through recovery, but still climbing our way out of the hole.
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teecee

Welcome from the north of England. I’m pleased you are getting compliance from your D at the moment and I hope this continues. 

Similarly my D reached out for help to make us aware of what was really going on even though we knew something was up. Throughout refeeding she was mostly compliant with some resistance at key points in her recovery. Weirdly with this illness when you give the ‘medicine’ (food) the symptoms seem to get worse before they get better the closer to WR you are. 

My D went from 53kg to 68kg but as we neared 68kg the compliance became less for a time. 

I do wish we had had your therapist as ours, at the time, was happy to declare her recovered and that we needed to forget it had happened and live our lives. He had no idea. Our D is kind, honest, loving however this illness is not and has been sneaky....throwing food....lying about what has/has not been eaten...etc. Monitoring is my profession and I expect it will be for many years to come even though I consider her to be in strong recovery just a little over2 years. 

Whatever you decide to do it is your journey and I wish you success. 

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Enn

Good morning from Canada!
You have been given great advice above and I really have nothing to add.
The weight/BMI is still very low. Does your d get medical monitoring at all?
When fighting a seriously deadly illness you need to do everything you can to get her recovered. That will mean watching her like a hawk for a long while.  Keep pushing the weight gain!!

I wish my d had been so compliant. What you describe is quite unusual. I am glad she is doing so much better and I would echo what  Foodsupport notes above about pushing the weight up more rapidly. Two pounds per week, would be ideal, but 1 per week is ok too. At three months it would have been nice to see a gain of about 12 to 24 pounds by now. 

How do we help get the rate of gain to increase?
If you let us know what she is eating we can help with ideas to increase. 

 

 

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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Torie
I am trying to think if anyone here made it through without being surprised by the lies and deception of our formerly model-citizen ED-kids.  Surely not I.  This vile illness makes our kids do things that are entirely out of character, and it is a kindness to monitor them closely enough to prevent that.  Sucks, but that was my experience. xx

-Torie
"We are angels of hope, of healing, and of light. Darkness flees from us." -YP 
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cindyj27
Thanks everyone for replies. She does get weekly weight monitoring and has vitals and bloodwork checked every 2 wks. I agree that weight gain has been slower than most people experience. She is eating 3 meals+snacks and desserts when we have them. The idea of gaining weight is still very anxiety provoking for her and she will often cry when she is overwhelmed with it. But no resistant or violent behavior. She has started repeatedly telling me “I hate this but I know I need it to get better” and I confirm it, which seems to make the anxiety a little better. At this point her meals are fairly normal portions but calorie dense. A lot of ice cream/milkshakes, Nutella, and sweets with meals/snacks because she has asked for them specifically. I think she is experiencing high levels of hunger because she was so malnourished before, and I try to provide foods that her body is craving because it seems like she needs them. She is at times nervous and upset when eating but says that she’s not going to stop because she doesn’t want to feel terrible like when restricting. So far I am taking therapists suggestions with a grain of salt and trying not to make it too hard on her. When I asked that she not help with meals anymore she was irritated for a bit but didn’t complain that much. Is still eating meal plan and generally good mood aside from a few rough spots. No signs of purging that I can see, so maybe she needs more calories to gain faster? Please let me know if you’ve experienced something similar
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MKR
Hi @cindyj27,

Welcome to the forum. 

Your daughter's progress sounds smooth and may it continue into the safe level (BMI of at least 20)! 

Your trusting relationship with your daughter should continue but you must have control of the food. No one is saying you have to change the tone. 

We had a sensible, hard-working teen who gradually started taking more and more interest in food and exercise. Until she got overwhelmed and behaved weirdly, like hiding food, going up and down stairs several times, talking and texting almost exclusively about food etc.

This transformation came as a shock to me, it made me feel like I failed with my parenting (where did it all go wrong?). I grieved the loss of trust, my most cherished parenting way that gave me all those blissful years of easy kids.

We soon had to stop involving her in grocery shopping or even food preparation because her brain needed a break from food thoughts. 

Your daughter will be relieved that someone else is making these decisions and she can get on with being a 16 year old, focusing on school, friends etc.
Mum's Kitchen

14-y-o "healthy living" led to AN in 2017 and WR at 16. Current muscle dysmorphia.
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Torie
cindyj27 wrote:
No signs of purging that I can see, so maybe she needs more calories to gain faster? Please let me know if you’ve experienced something similar

I like your idea of increasing the calories; the faster the weight gain, the sooner she is through the worst of this.  xx

-Torie
"We are angels of hope, of healing, and of light. Darkness flees from us." -YP 
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camusicmom

Id like to share our experience that might help you think through the level of involvement.

My d’s first episode of active anorexia was when she was 13.  Once she realized she had lost so much weight, she got really scared. She was incredibly compliant. Ate all the food I put in front of her, would remind me to give her snacks, and quickly weight restored in a couple of months.  Then all control turned over to her. We would periodically check her weight and everything seemed fine. She maintained at the low end of her weight goal.  I honestly used to read the comments on this forum and think to myself, “I’m not even sure that she has anorexia based on all of these horrible experiences.”  She was on the far end of the ease of recovery spectrum.

Fast forward a little over two years later, and she started restricting heavily last October. She has been in residential for almost 5 months and is one of the most stubborn cases, treatment resistant kids that a well-known recovery center has seen. So she is now on the other end of the spectrum as incredibly difficult to treat.  

My biggest regret is that I did not watch this more vigilantly. That I did not take this as a serious disease that applied to her and thought she had “a little anorexia” or “atypical”. I look back at my posts from 2017 and people
tried to (nicely) warn me.  


My advice would be to stay involved more than you think is needed. If it ends up being too much then you might be accused of being a slightly controlling parent. If it ends up being too little you could be in a very different situation in the future.

best of luck.

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Foxglove
Hello to all you amazing people. I have agonised whether I should post or not. FEAST helped me so much over the years.  The amazing Charlotte was our saviour and made me see how serious it was.  My d had AN binge/purge. Started in minor way, weight back on, all good, then suddenly she is very ill. After many battles with the system, she went to best in-patient unit in UK. She made good progress, but upon discharge she had no support, long story. Her lovely manner fooled the ignorant people who 'looked after her'.  Her family fought for her so hard. She had ICU admissions, she survived. She ended up with an ED psychiatrist who has outdated views. She died, alone, in February. Her heart was so damaged, it stopped. We went through the worst times when she was alive, my heart goes out to the stress you are all under right now helping your loved ones. You need to know, no pain compares to losing them. It is off the scale. If you think it hard now, you can't imagine the alternative. Don't stop fighting, while you still can.  
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Enn

Foxglove, 
I thank you for posting. I want to express my condolences to you and your family for what you have been through. 
Your story is so important for all of us to read. 
Eds are deadly and we should never ever forget it. 
I am thinking of you and your family and wishing all of you peace and healing. 
♥️ 

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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Foxglove
Thank you x
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Torie
Oh Foxglove, I am so sorry for your loss.   I imagine it was very difficult for you to come and share your story; thank you for doing that.   Please let us know if there's anything we can do for you - I wish I could at least find the right words.  It is obvious that you loved your d dearly - I'm sure she knew that, too.  

Your message is a powerful reminder that we must always keep an eye open for the telltale signs.  Thank you for that.  xx

-Torie
"We are angels of hope, of healing, and of light. Darkness flees from us." -YP 
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teecee
Dear Foxglove 
I also want to thank you for sharing this. It reminds us all how high the stakes are for our loved ones. Please accept my virtual love and hugs to you and your family for what you have and are going through. It breaks my heart.  Xxxxx
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MKR
You are so kind to share with us your pain, @Foxglove.

This illness is so cruel.

❤❤
Mum's Kitchen

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

It is indeed brave of you to share your tragic story with us and I also offer my condolences. The loss of a child has to be the worst of all, and especially in the circumstances you describe. I cannot state enough how raging I am on your behalf that clinicians with outdated views on eating disorders are still allowed to be let loose among this vulnerable cohort of patients and I am desperately sorry for the loss of your beautiful daughter. 
There are no words to describe your pain but those of here who understand these illnesses hope that our warmest thoughts and wishes can give you a modicum of comfort at least. 
Thank you for sharing. I am sure that those parents who are new to these illnesses will see through your post just how very serious they are and will have a renewed sense of purpose in battling the illness on their child s behalf. 
My stance is that the clinical community should be seeking to ensure that all their patients are given hope and the very best of care with the aim of preventing any more deaths from eating disorders. One death from an eating disorder is still one death too many.
Believe you can and you're halfway there.
Theodore Roosevelt.
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atdt31_US
Do you know her BMI (or height and weight) from about a year before diagnosis?  Those sound like really low BMIs.... but a very different t picture if she cruised along at 16 and went to 13 versus having been 19 and falling to 13.  Both indicate illness and both need food, don’t get me wrong ... as the mom of a very low BMI kid , I am just wondering where her baseline was when healthy. You will likely need to overshoot that number , by the way, and maintain it quite sometime, to get real healing. 
Mom of either pre-diagnosis or non-ed underweight 12 yoa (as of March 2018) kid here to learn how to achieve weight gain.  BMI steadily in the mid 12's for nearly her entire life.  Born 2006. UPDATE:  April 2018 diagnosed ARFID, based solely on weight being less than 75% of Ideal Body Weight.  Mildly picky, but mostly the problem is a volume/early satiety issue, along with abdominal discomfort and chronic constipation, all present since birth.  UPDATE:  July 2019 diagnosed with PANS. Dr. said likely started first PANS episode at less than 1 or 2 years of age.  On long-term daily prophylactic antibiotics. BMI now about 16 after period of intense refeeding prior to PANS dx,  followed by stagnation as we sort out what is next. FWIW ED-D is a fraternal twin and we have no other kids.
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Adlih64
Dear Foxglove, I am so sorry for your loss and the unimaginable pain you are experiencing. What a truly awful disease this is x
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LaraB
@Foxglove I am so sorry about your daughter.  I cannot imagine the pain you are going through. Thank you for sharing your story and urging us to keep fighting for our children. Sending you love.  
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Kali
Dear Foxglove,

i am so deeply sorry about the loss of your beautiful daughter and the struggle and pain you and your family have been through. 

warmly,

Kali
Food=Love
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Foxglove
Just to say thank you to all of you who posted, for your kind and loving messages. They mean a lot. X x
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