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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poohmama1982
Hey all, 

This is my first post on here, so I hope I'm welcome to join! I have some major concerns regarding my 15 year old D. She was diagnosed with AN in February of this year, and since then has primarily been living with her father (She would stay with me for only a few weeks before returning) . He promised to make sure that she was fed well, and the two of us had sat down together with her dietitian to create a meal plan she would follow. She had regular weigh ins at home, with visible progress, but D seemed terrified of going to treatment, so we decided to keep her at home. However, once D had come to stay with me I had noticed her EXTREME weight loss! When she was diagnosed, she was at a BMI of about 13, scary, I know. But at the time, she reassured us that she could recover at home, and since her bloods and heart condition were okay, we allowed it. I had no idea that this was to come, and this morning (her day of return) I took her to the hospital ASAP. She was weighed, and her BMI is 10!! Me and my husband are in the hospital with her, and waiting for the next step. My husband told me he is shocked, because she had been following her meal plans, and staying out after meals, so no purging could have occured. I don't have much insight on what has been going on, since I've been working two jobs, and D insisted on staying with her dad (which I thought was a good idea, since I'm rarely home anymore). I am so so worried, and have no idea what to do. Waiting for her doctor to get back to us on the next steps, or even if she will make it through the night. I'm just wondering on how she lost so much on her meal plan! Any advice would be amazing! 
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scaredmom
Hello and welcome. 
At this point in time she is extremely ill and should be admitted and to achieve medical stability. She should not in anyway be discharged. Please insist on admission.
The plan right now is medical monitoring and feeding and with such a low BMI, please ensure they are aware of refeeding syndrome and she should be placed in a monitored bed (cardiac monitor).
I am sorry it is so scary right now. 
Sending a hug.
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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blondie

Sadly this condition is incredibly devious and it could be whilst her weight LOOKED like it was improving, she was actually via water loading (drinking a lot before weigh in) or hiding heavy objects in her clothes - I've even heard of instances where people don't let themselves go to toilet for a few days beforehand in order to try and boost the number on the scales. To manage it you really need to know what the likely tricks are and have eyes in the back of your head - so it's possible she was hiding things when your husband wasn't looking (up sleeves, in pockets etc), was exercising in secret or many other little tricks.

Fearing treatment is common as sufferers know they are going to be monitored closely by people who are very knowledgeable about the condition and so aren't going to be able to "get away" with some of the tricks they do at home.

If inpatient/residential treatment is an option then I would definitely push for that - at least until she is passed this critical point in time where intake needs to be slowly increased with blood tests and sugar levels conducted regularly to check on various levels.

It sounds like her ED is incredibly strong and so if you do take her home then you will really need to watch her like a hawk at all times - including during the night as this is sometimes when they secretly exercise - and you should do "spot weigh ins" so that you can check her weight when she isn't anticipating it (i.e. won't have had a chance to "plan")

I will be keeping my fingers crossed for your daughter - and for you and your husband both for this evening and over the coming days
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Foodsupport_AUS
Welcome to the forum, sorry that you need to be here. It sounds like you have done the right thing taking her into hospital. She is extremely ill. As others have mentioned this illness is incredibly devious and it is very common, if not normal for previously honest children to lie about their illness, their intake and many other things related to ED. It sounds like there has been no medical oversight whilst your D has been living with her father. Most dietitians are poorly qualified to treat eating disorders, and certainly not alone. 

Your D should be safe in the hospital, so long as they are aware of re-feeding syndrome. Do mind saying where you are? Are you close to a specialist eating disorder center?  She will need to slowly but fairly swiftly increase her intake from where it has been to start seeing progress. If you d's doctor does not have a lot of experience with ED's it is important that they seek advice at this critical point. This paper gives some information on re-feeding and new approaches to it.  https://jeatdisord.biomedcentral.com/articles/10.1186/s40337-017-0134-6
D diagnosed restrictive AN June 2010 age 13.5. Weight restored July 2012. Relapse and now clawing our way back. Treatment: multiple hospitalisations and individual and family therapy.
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Foodsupport_AUS
Sorry new post, the editing program won't work. Please read widely if you haven't already. https://smile.amazon.com/When-Your-Teen-Eating-Disorder-ebook/dp/B07B91Q551/ref=smi_www_rco2_go_smi_1405964225?_encoding=UTF8&ie=UTF8&qid=&sr= This book gives you great information and also reading through the Family guides https://www.feast-ed.org/family-guide-series/  is a great idea. 
D diagnosed restrictive AN June 2010 age 13.5. Weight restored July 2012. Relapse and now clawing our way back. Treatment: multiple hospitalisations and individual and family therapy.
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Ellesmum
Your daughter absolutely should be admitted, I’m sorry you’re in this position.
Has her dad been at work during the times she’s stayed with him? Has she been in school because unless he’s been with her for every single meal and snack she won’t have been eating it and that’s how she would have lost weight, plus she may have been exercising in secret too and using tricks to make her weight appear higher.

i hope you get the help for her you need quickly. 
Ellesmum
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tina72
There are many possibilities how that could happen:
- she was alone and not supervised 24/7
- she could have purged even hours after meals (some can purge anytime without somebody noticing and I am quite sure he did not supervise her in the shower for example)
- she could have exercised
- meal plan was too low (many dietitians do not know how to make people gain weight and some patients need up to 6000 calories and more each day to gain)
- she could have hidden food when he turned her his back
- if she had weighings at home with progress this means she either had water load or weights in her pockets or manipulated the scale in other ways (check her PC and phone for bad internet sites where she got that informations from)

She might have wanted to stay with her dad because there were loopholes for AN to use. It is good that she is in IP now. She could have died with that low BMI.

But your question in the titel is about refeeding syndrome, what can we help with that?
Keep feeding. There is light at the end of the tunnel.
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poohmama1982
tina72 wrote:


But your question in the titel is about refeeding syndrome, what can we help with that?


Hello Tina, as well as every amazing person who has replied to my post, 

Thank you all for replying, it means so much in this time of incredible stress and fear for our daughters life. She made it through the night, and is going to be transfered to an inpatient ward in the next few days. I now see how she got to such a crucial state, and I had no idea months ago that this was to come, if I had known I would have had her go to treatment regardless of her wishes. To answer your question about refeeding, I am still concerned, even with a medical team by her side, that she could die. I've read about refeeding syndrome (she has an NG tube right now, so she is being fed) and that it's at a much higher risk of being fatal when the individual is at a much lower weight. I honestly have no idea how long she's been without proper food up to this point. I'm just wondering if there's anything I should be worried about? Is this still a concern? 
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scaredmom
Right now the focus will be on medical monitoring/intervention: heart, electrolytes and glucose. They will likely be checking these regularly. It may take a few days at least to ensure she is out of danger. And she is in the best place right now. 
I would be asking your medical team what the concerns are as they go along. I do hope that they communicate with you often and effectively. As we are not doctors and of course each child and situation is unique,  unfortunately, we cannot give you a definitive answer to those concerns listed above.
I am  glad they are feeding her.That is the main priority.

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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deenl
Hi poohmama and welcome,

You are in such a difficult situation at the moment but it is important to remember that your daughter is now in a safe place and will be very carefully monitored which reduces the risks enormously. I just wanted to let you know that my son had a BMI of 11 at his worst and is now living a happy life but still with only a few last ED habits to eliminate. It will, however, take a long time to help your daughter recover and you and your husband will most likely have to put in an enormous amount of energy, time and love to support her.

In my opinion, the key is for the parents to become very knowledgeable about the illness. The reading material that Foodsupport suggested is a great place to start and if either of you are logical and want to understand more about the illness, I recommend Decoding Anorexia by Carrie Arnold. It is a fascinating blend of layman's science and her personal story.

Unfortunately, the course of the illness means that your daughter will not return from inpatient cured so you and your husband will have to work together to find a way to support recovery after she gets home. This is why it is so important to use this time to gain knowledge.

Please feel free to come here and ask any questions that you have and encourage your husband to join too. We have all been in your shoes - I couldn't believe how my son got so ill in front of our eyes even though we went to the doctor etc. We can help you and your husband and any others who look after your daughter to understand the illness, to come to know that our kids mean what the promise at the time but are unable to put it into practice and how the anxiety the illness causes turns our usually very honest kids into desparate people who try to pull the wool over our eyes. We are here to share the knowledge we have gained on this difficult journey.

Warm wishes,

D
2015 12yo son restricting but no body image issues, no fat phobia; lost weight IP! Oct 2015 home, stable but no progress. Medical hosp to kick start recovery Feb 2016. Slowly and cautiously gaining weight at home and seeing signs of our real kid.

May 2017 Hovering around WR. Mood great, mostly. Building up hour by hour at school after 18 months at home. Summer 2017 Happy, first trip away in years, food variety, begin socialising. Sept 2017, back to school FT first time in 2 years. [thumb] 2018 growing so fast hard to keep pace with weight
  • Swedish proverb: Love me when I least deserve it because that's when I need it most.
  • We are what we repeatedly do. Excellence Recovery, then, is not an act but a habit. Aristotle.
  • If the plan doesn't work, change the plan but never the goal.
  • We cannot control the wind but we can direct the sail.
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poohmama1982
deenl wrote:
Hi poohmama and welcome,

You are in such a difficult situation at the moment but it is important to remember that your daughter is now in a safe place and will be very carefully monitored which reduces the risks enormously. I just wanted to let you know that my son had a BMI of 11 at his worst and is now living a happy life but still with only a few last ED habits to eliminate. It will, however, take a long time to help your daughter recover and you and your husband will most likely have to put in an enormous amount of energy, time and love to support her.

In my opinion, the key is for the parents to become very knowledgeable about the illness. The reading material that Foodsupport suggested is a great place to start and if either of you are logical and want to understand more about the illness, I recommend Decoding Anorexia by Carrie Arnold. It is a fascinating blend of layman's science and her personal story.

Unfortunately, the course of the illness means that your daughter will not return from inpatient cured so you and your husband will have to work together to find a way to support recovery after she gets home. This is why it is so important to use this time to gain knowledge.

Please feel free to come here and ask any questions that you have and encourage your husband to join too. We have all been in your shoes - I couldn't believe how my son got so ill in front of our eyes even though we went to the doctor etc. We can help you and your husband and any others who look after your daughter to understand the illness, to come to know that our kids mean what the promise at the time but are unable to put it into practice and how the anxiety the illness causes turns our usually very honest kids into desparate people who try to pull the wool over our eyes. We are here to share the knowledge we have gained on this difficult journey.

Warm wishes,

D


Hi Deenl,

Thank you so much for your kind words, my D has been asleep for the majority of her stay at the hospital. When she got out of her dads car, I could see just how much she was struggling to simply close the door. She could barely keep up with our conversation when she arrived. Since then, she has woken up a few times, but it seems she's so weak she cannot even process the situation much. I was in tears when I was stroking her head and noticed all of her lovely hair was piling up into my hands! I have done a lot of research about this illness, as well, along with personal experience (having suffered myself), so it could have been that she inherited this disease from me. It's truly horrible for both the sufferer, and their loved ones. I've managed to contact both of my work places, and told them what was happening, and that I won't be able to work for some time. I will for sure ask my husband to join me in educating ourselves further, and thank you again for all of your support.
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tina72

To answer your question about refeeding, I am still concerned, even with a medical team by her side, that she could die. I've read about refeeding syndrome (she has an NG tube right now, so she is being fed) and that it's at a much higher risk of being fatal when the individual is at a much lower weight. I honestly have no idea how long she's been without proper food up to this point. I'm just wondering if there's anything I should be worried about? Is this still a concern? 


If your d is in a hospital they normally should be aware of refeeding syndrom and know what to check to avoid that. It is quite rare so maybe the staff there is not experienced with it. I would go on safety and ask the doctors directly if they are aware of that risk and what they do to avoid that.
In total she is much safer now than at any time at home and she can be supervised there in best way.

My d also could barely speak when she was admitted, a bright girl with a gifted brain was not able to speak sentences with more than 3 words, mostly she only said yes or no. She also lost half of her wonderful long hair.
To give you some hope, with food and love and time she was back to normal within a year and could finish school with a very good result and is at University now and her hair is growing back slowly but steadily.
Keep feeding. There is light at the end of the tunnel.
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toothfairy
Hi there,
Here are the AED medical guidelines.
My advice is to print them
out, & read them thoroughly, including marking out all the tests that she should be having to show clinicians if required.It might be an idea to keep them in your handbag too.
http://www.nyeatingdisorders.org/pdf/AED%20Medical%20Management%20Guide%203rd%20Edition.pdf
Food is the medicine. Recovery is possible.
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