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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Waterman_48
Hi, my 13-year-old son has an eating disorder that just came on suddenly. Since August, he has been hospitalized twice for weight stabilization and he is in an eating disorder program for six hours a day to both gain weight and deal with his fears, but so far nothing is working. We cannot break through his fears. We try to be supportive, loving and follow the plan, but every day we fail. Next, he'll go into the ten-hour day program and if that does not work we will have to consider residential treatment far away from home, where he will be separated from us. As it is we are burning through our savings to rent an apartment away from our home, so he can attend the daily program he is in now. My wife and I are living apart because I have to work, so she is his primary caregiver, and I am there several days a week. There is  never a completely good day. There are hints throughout the day of my son the way he was before this all began, but the eating disorder has him under its control. I'm not even sure he is ready to fight for recovery. Mostly, I think he would rather not fight--and would rather just be left alone. We are losing hope and faith, and it feels like time is running out for him and us. Just needed to share as I am fully in despair mode right now.
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Mcmum
Hello Waterman. I am sure others more experienced than me will be along shortly but just to reassure you that you and your family can do this. Your son will absolutely not want to get better as he is in the grip of this dreadful illness but you can help him and it sounds like you have already got a lot of support in place.

Please read around this site, have a look at Eva Musby's website and buy her book and others will be along to offer more specific support. Our son was diagnosed in August and already we are in a much better place but the shock and trauma are hard to manage.

Wwhere are you? Any other specific details regarding the difficulties you are facing will be helpful to the very wise people on here. Take care and hang in there for more advice xx
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teecee
Welcome but so sorry you also find yourself here also.
It is normal to feel like you do at the moment...who wouldn’t in your situation.
Please know that it’s the ED that wants you to leave your son alone not your lovely boy. Your lovely boy is locked inside shouting out to you but he can’t be heard. You are doing an amazing job at recognising he needs you and doing what you can. You most certainly have not failed. With this illness there is only feedback when things don’t work out how we want. We have to continually alter our course and approach as the illness is so complex. However it is possible to fully recover so do t lose sight of that.
Time is not running out, it will take as long as it takes. It’s a marathon not a sprint and therefore it’s so so so important that you and your wife take care of each other by giving each other time for ‘me time’ so you can recharge your batteries.
Please come here as often as you need to with questions or just to vent... xx
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Waterman_48
teecee wrote:
Welcome but so sorry you also find yourself here also.
It is normal to feel like you do at the moment...who wouldn’t in your situation.
Please know that it’s the ED that wants you to leave your son alone not your lovely boy. Your lovely boy is locked inside shouting out to you but he can’t be heard. You are doing an amazing job at recognising he needs you and doing what you can. You most certainly have not failed. With this illness there is only feedback when things don’t work out how we want. We have to continually alter our course and approach as the illness is so complex. However it is possible to fully recover so do t lose sight of that.
Time is not running out, it will take as long as it takes. It’s a marathon not a sprint and therefore it’s so so so important that you and your wife take care of each other by giving each other time for ‘me time’ so you can recharge your batteries.
Please come here as often as you need to with questions or just to vent... xx
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Waterman_48
Hi, appreciate the quick responses.
My son was first diagnosed with ARFID but now the therapists in his program in San Diego think he may be going through anorexia, though not related to body image. He has severe anxiety and depression with a fear of getting sick (that eating will make him sick). He is on a plan to eat three meals a day, plus three snacks, and while he eats, he never fully eats--and while he did gain 15 pounds from August until now--he is losing again. Some of that weight came from a feeding tube while in the hospital. In the program, they say if he gains weight, something in his brain will click and things will be easier for him based on the weight restoration, but we are stuck. He cannot gain weight because he will not take in enough food, and he has constant meal refusals. No reward works. No consequence works. The sadness in his face is so painful. I know he feels defeated but there is no voice louder than the eating disorder. It may be a marathon, but the other consideration is that we do not have the financial wherewithal to rent apartments forever away from home. And I wish I could shake the feeling of failure but right now I cannot.
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Nicstar4
Welcome Waterman_48, I hope that you can feel support from this site. You have to be the one fighting ED. He cannot do it. It is hard. One step at a time. Don’t forget that your son is still there, remember that. You will get glimpses of him, and then more. Hang on to that and fight ED for that!
Some days are harder than others, you will learn new skills and find ways of closing the loopholes. I am deep in that learning curve now!
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OneToughMomma
Hi, Waterman, I'm sorry you're here.

May I ask a couple of questions?  

You say your son is in a program but that you are not making progress.  Is he eating during the day in the program?  What are his team offering to support eating at 'home' when he's with your wife?  

When he refuses, what does that look like?  Who sits at the table? What is said?  How long does he sit?

Other than the feeding tube, was he eating better during the time he gained 15 pounds? What was happening to support him during that time?

These are lots of questions, and I apologise if I've overwhelmed you.  But maybe if we have some specifics, we can help you brainstorm some solutions to this problem. The people are very wise and have heaps of experience.

You're right when you say your son doesn't want to fight.  Right now he can't and he needs someone to fight for him.

Sending your family a big hug,

xoOTM


D in and out of EDNOS since age 8. dx RAN 2013. WR Aug '14. Graduated FBT June 2015 at 18 yrs old. [thumb]
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Torie
Hi Waterman, So sorry you needed to join us here.

Is your son being treated at UCSD?  They are a top-notch facility.  Really excellent.  So if he is being treated there, I'm very optimistic that you are receiving good advice from them.  If not, I would give them a call asap.

It is really great that he gained 15 pounds - I know you look forward to getting back to the gaining.  Please feel free to ask all the question you like. xx

-Torie
"We are angels of hope, of healing, and of light. Darkness flees from us." -YP 
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Foodsupport_AUS
Welcome to the forum. It is a heartbreaking illness to watch. When they are ill at the start it is hard to see that they can ever get better and recover. 

How can we help you problem solve the feeding? He does need to gain the weight and once gained his brain can start to heal. Unfortunately it can take some time to do so. In time he will start to fight with you and not against you but it can take a long time unfortunately. 
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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Waterman_48
Torie wrote:
Hi Waterman, So sorry you needed to join us here.

Is your son being treated at UCSD?  They are a top-notch facility.  Really excellent.  So if he is being treated there, I'm very optimistic that you are receiving good advice from them.  If not, I would give them a call asap.

It is really great that he gained 15 pounds - I know you look forward to getting back to the gaining.  Please feel free to ask all the question you like. xx

-Torie
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Waterman_48
Hi, yes, he is being treated at UCSD, but so far without success. Like I said, he does not seem ready for recovery. But, then again, there are moments where he seems to try. This morning, for example, we woke up and he and I went for a little walk to the Vons right behind the apartment we have rented in San Diego. We purchased items he wanted. When, we got home, I prepared his breakfast--two waffles and two slices of turkey bacon. This weekend he is having a lot of anxiety, which is causing his stomach to feel something, so as soon as I served him the breakfast and sat with him, he went into anxiety mode--even cried. But then he reset. I'm not sure if that was the eating disorder playing me, but I asked if he would toast and butter instead since his stomach wasn't great. At least he ate the toast and butter and a slice and half of bacon and a few sips of milk. It's not the calories he needs, but it is something--he tried. But he will end up losing weight this weekend, and if it becomes acute, we will find ourselves in the hospital for a third time. I do believe in the UCSD program but neither the therapists or the psychiatrist and meds have been able to cut through the disorder. Not sure what will work for him.
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Waterman_48
OneToughMomma wrote:
Hi, Waterman, I'm sorry you're here.

May I ask a couple of questions?  

You say your son is in a program but that you are not making progress.  Is he eating during the day in the program?  What are his team offering to support eating at 'home' when he's with your wife?  

When he refuses, what does that look like?  Who sits at the table? What is said?  How long does he sit?

Other than the feeding tube, was he eating better during the time he gained 15 pounds? What was happening to support him during that time?

These are lots of questions, and I apologise if I've overwhelmed you.  But maybe if we have some specifics, we can help you brainstorm some solutions to this problem. The people are very wise and have heaps of experience.

You're right when you say your son doesn't want to fight.  Right now he can't and he needs someone to fight for him.

Sending your family a big hug,

xoOTM


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Enn
Hi Waterman_48,
I welcome you here too. 
Just my perspective of what you written, you are really early into this and it takes time to figure out how you are going to get the food in. As for him not being ready for recovery, he is too ill to know how ill he is. 


Please search on the the ATDT site and here

https://www.mirror-mirror.org/anosognosia.htm
The anxiety is hard, I know. With more food and weight gain, it does get better. 
Others have given you great advice, I just wanted to add my part. 
I am so sorry you need to be here. It is tough, tough, tough. 
What are you struggling with right now? Is  it the calorie intake, food refusal,exercise ?
Please let us know, we want to help.
XXX

food+more food+time+love+good professional help +ATDT+ no exercise+ state not just weight+/- the "right" medicine= healing ---> recovery(--->life without ED)

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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Waterman_48

Hi, sorry it has taken me so long to respond. Let me try to address your questions.

He rarely does 100 percent of his meals in the program, and he does not complete the boost, either.
In terms of support, we have a feeding plan based on consequences and contracts, but unfortunately his fear of food and getting sick is stronger than any consequences. Again, he will eat but usually not the full meal. We will sit with him and try to coach him. Like this weekend, he is going through a lot of anxiety because he fears he is having diarrhea. His stool is very lose this weekend, and he is afraid of getting sick. So he refused the waffles I served him, even started crying because he said his stomach did not feel well. But, I convinced him to eat toast and butter and then he also ate a slice and half of turkey bacon--and a few sips of milk. 

You ask how his refusals look. At his worst, he will completely shut down--like in a place where he can't even hear us. A more normal refusal comes when he gets half way through a meal and just stops and can't be coached into finishing or even having a carnation.

Both volume and variety are an issue right now. The kinds of food he will eat are so restricted--mostly just pasta, hash browns, turkey bacon, peanut butter and jelly, chips and other snack foods, like cookies. Chicken sometimes works, but it's inconsistent. Cheese pizza sometimes works but also is inconsistent. Waffles were working up until today. 

On days I'm there, I sit with him. My wife also sits with him. We do try to eat dinner together, but sometimes he just wants to eat alone at the table. We try to talk about non-food issues, unless we need to go into coaching mode.

On our first visit to the hospital, when he was just 55 pounds, he ate great. Over two weeks, he reached the point where he could choose his own food, and he was eating everything. His weight rose to 63 pounds. He was happy. He called it the best vacation he ever had. Because he was doing so well, the insurance stopped coverage and we had to go home a week before he started his program at UCSD. During that week, we increased his weight by a pound, but by the end of the week, things were getting tough. When we started, the UCSD program, things went downhill. The food was different than the hospital, the time between meals was more condensed because it was a six-hour pediatric program. He just couldn't adjust and lost weight. We ended up back in the hospital, and it was rough. He was really depressed. He couldn't eat the hospital food because it was too safe. We had to provide every meal to get him ready for UCSD. He needed a feeding tube--twice. They took it out once but then put it back in. That's when he gained the most weight. Then, he improved and was eating better. Got up to 70 pounds. Then, he was sent back to UCSD. Things started out okay the first week, but have been a struggle these last two weeks. He is down to 69 pounds, and probably after this weekend, down to 68. This is a severely undernourished 13 year old. But he can still function in all other ways. And his vitals are good. In the shortened school program there, he is doing excellent--even if his brain is starved for food.

So the next step is to put into the 10-hour adolescent program, which means all meals there, and if that doesn't work, 24-hour residential treatment, likely in Denver, which means he would be separated from us for about two months--but we'll do whatever it takes.

Thanks for asking these important questions.


 

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Waterman_48
scaredmom wrote:
Hi Waterman_48,
I welcome you here too. 
Just my perspective of what you written, you are really early into this and it takes time to figure out how you are going to get the food in. As for him not being ready for recovery, he is too ill to know how ill he is. 


Please search on the the ATDT site and here

https://www.mirror-mirror.org/anosognosia.htm
The anxiety is hard, I know. With more food and weight gain, it does get better. 
Others have given you great advice, I just wanted to add my part. 
I am so sorry you need to be here. It is tough, tough, tough. 
What are you struggling with right now? Is  it the calorie intake, food refusal,exercise ?
Please let us know, we want to help.
XXX

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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Waterman_48
Hi, he is struggling with food intake and food variety. Basically at any moment any food can be a fear food.

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Enn

So can we lace the food he does eat with extra calories? Pasta you mentioned above, does he have sauce with it? Add in olive oil, meat, cheese etc..
For adding in a new food, some have had to sit for hours and hours on end ( I suspect that is what you are doing too?). and then just get one more bite every time.  I would tell D about a new food a few days ahead. It made her anxious, but she knew it was coming in three days or so, then she would negotiate, "do I have to eat it all? " etc.. I would just say calmly ( I WAS NOT calm at all) that " it is ok" very noncommittal words. It took us about 4 weeks to get it going and that was after 3.5 weeks of IP too. 

For my D at 11, yes, many foods were fear foods. And it was yucky, to say the least at the beginning. We used the foods she would eat and added oil, cream, etc.
Yes she fought or tried to withdraw and we just sat there. There is a thread by deenl about super resisters. I will find and post it here too. There are many ways to get him to eat and others will give you more ideas too. 
I really hope we can get you to a place where you can feel better and have tools to use that work
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)
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Enn
Here you go... hope this helps
XXX
https://www.aroundthedinnertable.org/post/the-super-resistors-when-lsuye-and-magic-plate-cause-total-shut-down-8122350?pid=1305903037#gsc.tab=0
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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ValentinaGermania
Hi Waterman_48,
I send you a very warm welcome from Germany! I am sure you will get great help here.

A strange idea, and I would not mention it if I did not know it helped with others (even older kids): Did you already try to spoon-feed him?
 
Do you think he will drink smoothies or milkshakes? Some here had great progress waking them up very early in the morning with a shake in their hands and just say "here, drink that" and let them roll over to sleep again. ED is sometimes asleep in the early morning...

UCSD is normally a really good adress so if they say he needs a higher level of care I would trust in that.

Tina72
Keep feeding. There is light at the end of the tunnel.
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sk8r31
A warm welcome to you as well, though sorry you have a need to be here.  I wonder if you have considered the program at Kartini Clinic, as they are very experienced with ARFID.  You may find some useful info on some of their blogs as well.

As mentioned earlier, with an dx in August, you are still very much in the early days of this illness.  You likely will not get a 'buy-in' for recovery at this stage.  The support of a good team and the peer support on this forum will hopefully give you some strategies and guidance.

Warmly,
sk8r31
It is good to not only hope to be successful, but to expect it and accept it--Maya Angelou
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debra18
Is a therapist helping you to know what to tell him regarding his fear of getting sick? Did you read Eva Musby's book? She writes how to speak to your child when they are afraid. If he has a fear of getting sick, the reality is kids do get sick sometimes. Validate his feelings and fears, and tell him that he should trust you.
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Foodsupport_AUS
Your son sound a lot like my D when she was very ill. Sometimes there is no consequence or reward that can help them move forward to eat and they just shut down. It is very sad and distressing to watch. It sounds as though your son really does need the more intensive program to help him keep on eating. At the moment his fear is likely to be too high for him to be able to participate in wanting to get better, we have to do that for them when they are this ill. 
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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Waterman_48
So, we've had a better day today.
Got through breakfast, though not enough--toast with butter, some bacon and half a glass of milk. Ate a mid-morning snack. Then, he ate a p&j sandwich for lunch--no crust--and chips and a drink (again--not enough). Next up is afternoon snack and then dinner. We've taken three short walks (don't want to over do it) but I guess good to get some air. He is in much better spirits. His nervous stomach has passed. Stool today was more normal. But I know we are not feeding him enough and his weight will be down tomorrow. But after yesterday's struggles, just happy he is more open to eating today. At the program, he is weighed three times a week, and those days I think are the hardest. I am still praying this program can work for him, but I am prepared for residential treatment if necessary.
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Torie
Waterman_48 wrote:
 His nervous stomach has passed. Stool today was more normal.


These types of complaints are extremely common.  Most here find it best to acknowledge the complaint ("It sounds like you're really concerned about that" or whatever) and then change the subject ("Do you know where I left my keys?")  Refeeding really does come with loads of digestive issues, and it can be like walking into quicksand to accommodate them.  Of course, that's easy for me to say, while you and your w are the ones there on the ground to deal with the reality of it all.  So just takes whatever advice makes sense to you and leave the rest. xx

-Torie
"We are angels of hope, of healing, and of light. Darkness flees from us." -YP 
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Kali
Dear Waterman48,

You have already gotten so much helpful advice but I will add that when things were bad and I was trying to bump up the calories I got a product called benecalorie and added it to some of the meals. It can be ordered online. You can stir it into pasta sauces, soups, chili, etc and it can't be tasted. A small container has 350 calories so it adds a very small footprint.

warmly,

Kali
Food=Love
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