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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SparkJJ
Hello, I am all of 2 weeks into this journey with started with a different crisis, has had us journey through pediatrician, counselor at ped office,  drug testing, 2x mental health walk-in clinic, night at the ER from concern over self-harm, psychiatrist, and now an intensive outpatient clinic eval.    He has declared that he has an eating disorder and the psych and ED clinic are confirming that...plus a strong amount of anxiety and who knows what else.    IHe hasn't been able to go back to school for two weeks since the start of this crisis, has hardly eaten much during these weeks. He's not in crisis physical condition but the ED doc said he had moderate to severe AN. 
He is very resistant to treatment.  He says it's really the anxiety that is the problem and is very very angry. I'm not sure we'll be able to get him to the next clinic eval or psych appointment.   He turns 18 in one month, wants to go to college in September, and feels like he doesn't need this. Coupled with this, it is very hard to find a therapist and people who know how to treat/what to do.  We do have what looks like 2 very good IOP clinics in town, but they only offer the intensive/day programs.

I am interested in feedback on:

1) Generally any words of wisdom for someone at this stage of the journey
2) I am hearing and reading that IOP is way to go, but very hard to know if other options could work..which is difficult in face of his resistance
3) Suggestions for dealing with resistance.   Have heard discusison of medical guardiandship and using college as leverage.  Both may be fine, but not sure if sufficient

Thanks!
A Dad
 
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teecee

Hello from the UK. I’m not sure where you are but am guessing the US? 

I’m not so sure of the medical facilities where you are so can only impart our experience. 

We refed at home using FBT. Food is the medicine and the most important thing above therapists etc. Start without delay feeding high fats/calories (the thing unfortunately that they are most fearful of). 

Feed every 3 hours at least and LOTS of it....I was astounded at how much was needed. At this stage anything goes. All food is good. 

Eva MUSBYs book and YouTube video snippets are great to get you up to speed quickly with tips for refeeding. 

Come and ask here lots of things. You will find many people who have walked in your shoes and will have lots of ideas and reassurance for you. 

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Foodsupport_AUS
Welcome to the forum, so sorry that you have had to find your way here. Unfortunately what you are describing in your son is normal and typical for this illness. Your profile does indicate you are in the US. This gives you a wide range of treatment options but means you need to be even more selective about where you go. 

Resistance and anxiety often accompanied by depression and suicidal thoughts self-harm are very, very common. When in the depths of this illness your son is unable to rationally evaluate his state, even though the words that come out may seem to make sense. 

There is a some great information on the FEAST website - if you haven't been there already, and this book is also highly recommended. 

Even though your son is almost an adult he is failing at one of the most basic human functions, the ability to feed himself. First and foremost he needs help with this. Many of the things you are seeing are at least in part due to issues with malnutrition, however requiring him to eat (which must be done) will increase his anxiety. I would strongly recommend considering FBT is this is an option for you early on, or intensive outpatient where there is an insistence on completing all meals and weight gain. Don't expect your son to want or agree to this at this stage, he is too ill to do so. He needs to be required to comply, not by force but by not being given any other choices but to do so. 

Please ask lots of questions. 
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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ValentinaGermania
SparkJJ wrote:
 
He is very resistant to treatment.  He says it's really the anxiety that is the problem and is very very angry. I'm not sure we'll be able to get him to the next clinic eval or psych appointment.   He turns 18 in one month, wants to go to college in September, and feels like he doesn't need this. Coupled with this, it is very hard to find a therapist and people who know how to treat/what to do.  We do have what looks like 2 very good IOP clinics in town, but they only offer the intensive/day programs.

I am interested in feedback on:

1) Generally any words of wisdom for someone at this stage of the journey
2) I am hearing and reading that IOP is way to go, but very hard to know if other options could work..which is difficult in face of his resistance
3) Suggestions for dealing with resistance.   Have heard discusison of medical guardiandship and using college as leverage.  Both may be fine, but not sure if sufficient

Thanks!
A Dad
 


Hi Dad and a very warm welcome from Germany!

It is totally normal for RAN that your son is resistant and does not want to have help and refuses any treatment.
He gets 18 soon but I can bet he is not financially independent from you. So if you pay for phone, car, insurances and living you can set rules. Eating what you serve is rule no 1.
And if he wants to go to college in September and is not recovered then (and this will not happen in this short time) you will not pay for it and he needs to take a gap year and recover before he can go. That is what you can do. You can set rules.

Our d was 17 when we refed her in 2017. We had a contract and wrote down what we do for her and what she needs to do for that. She is at a healthy weight for more than 2,5 years now and at University and doing very well. But she knows that skipping one meal means to lose the car key and losing weight more than 2 kg means a gap semester and refeeding at home. They need a very tight safety net to avoid relapses in the first years and that works very well here.

Can you maybe tell us in what state you are or what region and we can help you to find a specialised ED therapist?
Keep feeding. There is light at the end of the tunnel.
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teecee
Just to reiterate what VG has said...my 18 yr old AN D is in to the third year of ED and in strong recovery. It is still a consideration for a gap year from university in Sept. Its a marathon not a sprint - this illness has imposed complete changes in our life which initially I was resistant to but now I find it easier not too plan too far a head and go with the flow. It makes for less stress. 
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SparkJJ
Thank you all for these thoughtful responses!  I am in Oregon in the United States.  We have two clinics in town that offer IOP: Kartini and Providence St. Vincent's Adolescent and Adult Eating Disorder Clinic.   The lead doctors are Julie O' Toole and Jason Stone respectively I believe.   

My son went to Kartini for the full evaluation, which was rather intrusive.  Doc there told us we had big problem due to his resistance.  Now he is all fired up and telling us there's no way he's going to an all day clinic...it will ruin his life, he hates us, etc.   The force is strong in this one, and he does not see the longer term implications or recognize the severity.

It's becoming evident to us that something like 30-40 hour/wk IOP with FBT is what he needs, and the college, car, cell phone leverage might get us there...but if he is SO resistant at this age, will it be still worthwhile?   Would lesser outpatient approach be useful at all if he is 'seemingly' more willing to do it?   And if so, would love to hear any resources you know of.  

Thank you!
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teecee

Anosognosia is real in our kids (inability to accept they are ill). 

Motivation to recover is not always evident however if you can find it it will help your S push on. My Ds motivation was not retaking the school year so she complied with much of the food re REQUIRED her to eat (not ask). They cannot make choices when they are ill so take any choices away and just present the food. All he has to do is eat it ... I say ‘all he has to do’ but we all know it’s not easy for a person with ED to do. 

We did LSUYE (Life Stops Until You Eat) at our house...battened down the hatches and fed...nothing else. This worked for us as we chose to rip the plaster off and go for it. For others it helps to slowly build. We were weight restored after a couple of months. 

I read Decoding Anorexia by Carrie Arnold when I was able after initial refeeding but up to that point Eva MUSBY was my saviour. 

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greekdude
@SparkJJ hello from a fellow dad also with son suffering from AN. This is a terrible situation at first, but soon I hope you'll get a deeper insight into the core of this illness. What you need to do is leave aside any thoughts of college or academic performance. Your S is sick and you must concentrate exclusively on this. Logic at this point does not pay out that well, judging from our own experience. I have read cases of using contracts to negotiate with children but this happens at a later stage. For now, all it matters is weight gain and restoration.
When our S went into residential program in Otc 2019 (he was only 14.5) they denied us seeing him for more than one full month. Still remember the first day without him in the house.
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Torie
Hello, you are lucky to have Kartini in your town.  Personally, I would tend to trust their judgment as they are considered to be one of the top ED facilities in the world.  

The options with this vile illness are extremely stubborn, even more stubborn, and most stubborn possible.  Wherever you are on that scale, it is not going to get any "easier" until the needed weight goes on.  You will never have more parental authority than you do at present, and your son urgently needs you to employ that to rescue him from this beast of a disease.

AN is a brain-based illness that makes our normally rational kids utterly irrational about anything pertaining to calories and ED treatment.  It took me a while to see for myself that the good folks here were correct in telling me there was no point trying to reason with my ED-kid because (by definition) it is futile to try to reason with someone who is irrational.  (I'm sure he is rational about everything else, and can argue like a high-priced lawyer.)

This is a really tough illness to beat - most here will tell you it is the hardest thing we have ever done.  But it is possible.  The time to act is now, and the stronger your action, the better. 

Please feel free to ask all the questions you like and please keep us posted. xx

-Torie
"We are angels of hope, of healing, and of light. Darkness flees from us." -YP 
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Foodsupport_AUS
I agree, if you have Kartini clinic so close I would be pushing to do what they have said to do. They are one of the top clinics. Of course your son doesn't think he needs to be there. That is par for the course, however he will get much better faster by proving he doesn't need to be there. That is if he eats well and manages everything well it is likely he will be stepped down through care. If he can't do that well he needs the level of care in the first place. 
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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ValentinaGermania
Kartini and Dr. O´Toole are one of the best teams in the world for this disease. Please take him there, they will know how tohandle his resistance as this is part of the disease.
Keep feeding. There is light at the end of the tunnel.
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SparkJJ
Thank you all for these responses. They are very helpful in content as well in support.   The problem I am seeing is he turns 18 in 3 weeks.  He will pull out. A medical guardianship legal action is possible, though he will object and we'll end up taking him to court.  His weight is low but not extremely low  (132 lbs at 5'10") and he ate a bunch this weekend to 'show me he doesn't need the care'.  I understand the resistance and anosognia and the idea that the eating he did this weekend is not sustainable.....I just don't see that the level of resistance he will put up will end up in a good result.  I mean he will fight the clinic tooth and nail and possibly even do self-harm to show who is boss.   Am I grasping at straws thinking if I can get him into something less intensive..at his choice in avoiding the intensive program, that it could be more successful?  Anyone have success with that?  This is obviously a horrible thought and self-bargaining, but part of me wonders if he needs to hit a lower bottom before taking such action.    And consider this is 18 year old very strong willed young man...different than a younger teen. Am I in denial? Thanks
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MKR
SparkJJ wrote:
His weight is low but not extremely low  (132 lbs at 5'10") and he ate a bunch this weekend to 'show me he doesn't need the care'. 


Could you challenge him into eating like this more often? Might work.

I used my daughter's ED thinking to get her to eat. She wanted us all to eat less, so I'd say, "If you don't have it, I will" and it worked. Lately, it's her frugality I employ. She doesn't like things going to waste, so I deliberately make extra, and she often tops up her plate now.

A bit convoluted, I know. But so is the ED thinking.
Mum's Kitchen

14-y-o "healthy living" led to AN in 2017 and WR at 16. Current muscle dysmorphia.
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Foodsupport_AUS
There is no one way to deal with this and you know your son best. It is however expected that he will try to minimise the level of care and try and avoid the most effective care because it is the nature of ED.

If you read some of Deenl's super resistor thread however you will see that going head to head with ED is not always the best approach for all kids and yes sometimes if there is a modicum of co-operation working with that and pushing firmly in the right direction can then get better results. It may be worth if you go down this path that you consider a "contract" of what would be expected and outcomes, and when the trial of using his technique has failed that a higher level of care would be required. You would then be able to make it clear that you have tried his options first and now he needs to try your recommendations. 

At 18 you still have a lot of influence, although there are a number of privacy issues it is likely you are still financially supporting him to a large degree which can give you a lot of leverage to push him into treatment. 
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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MKR
SparkJJ wrote:
... part of me wonders if he needs to hit a lower bottom  before taking such action.    And consider this is 18 year old very strong willed young man...different than a younger teen. Am I in denial? Thanks


You are not in denial. We all had to get our head around how this works. ED can be very convincing and sound so rational, but at the same time resistant to putting on more weight. It was hard not to engage in the debate with my ED child. Only when I realised she talked about little else but food, exercise, weight did I realise it was not my child talking but the illness.

The lower weight, apart from endangering some vital organs, also means longer climb back to safety.  The behaviour gets worse, too almost animalistic (well with our D it did, breaks my heart to remember). 

... consider a "contract" of what would be expected and outcomes, and when the trial of using his technique has failed that a higher level of care would be required. You would then be able to make it clear that you have tried his options first and now he needs to try your recommendations.


This sounds like a perfect way to get your S to co-operate.

All the best and sending you strength,
Mum's Kitchen

14-y-o "healthy living" led to AN in 2017 and WR at 16. Current muscle dysmorphia.
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Kadie
Wow, sounds like where we were in November.  Same age within a few months too.  Convinced our son to eat more protein to start to fuel his workouts and more in general, but it wasn’t enough and he crashed mid January. He did want help at that point and felt out of control, but that doesn’t mean refeeding was easy.   It was so hard to get help outside and know that you are doing the right thing and so stressful. My advice is find what connects him to the food, be that getting stronger, which is often the case with boys, or whatever else.  My son reacted to his doc telling him he almost needed a child’s blood pressure cuff due to muscle atrophy.  He actually started bingeing too, which was terrifying.  We took over and gave him anything he would eat. Then 3 weeks in finally saw a specialist who said he needed a meal plan and we’d see the dietician - tbd when.  It was a horrible, horrible time, filled with self doubt. Long story short, I’d say set up a meal plan ASAP with food every few hours.  Let him know you have it and will be following it, he has no option.  Be relentless on he must eat and you know what is best.  He will resist, but over a few days, that will start to weaken.  I had no clue on calorie counts til several weeks into it, but they need everything. Don’t be afraid to give him everything and make it high calorie. Add butter, cream, protein powder, nuts, everything. Don’t let him watch you make things, just take over all his meals (which is so hard with an a fairly independent kid).  A book referral we got from the dietician is ‘How to Nourish Your Child through an eating disorde’ by Casey Crosby.  Just read what you need to know for now.  Once some of the weight came back it was better, but the process to regain is awful for both of you, but stick to it, be firm and cry in your room.  The ED is a bully and treat it like that, when he tells you he isn’t doing something.  It is horrible, but you can do it.  If you can both be home, that is best.  It is exhausting.  Keep hitting him with medical facts, he won’t react well to therapy until he regains some weight, so don’t focus on that,  if your family doc is comfortable with depression meds, if it’s been a long standing issue, get them now and start them - especially if he thinks it anxiety.  They take a few weeks to work, but when they did for us, just last week, out boy was back.  More of the road ahead, but much easier.  Hang in there. You can do this.  It will be the hardest thing you every do, and if he reacts as my son did, his anxiety will be thru the roof.  Try to be compassionate, don’t beat yourself up if you get made or stressed in front of him, take some time for you.  Buckle in, it’s a rough few weeks, but social isolation means you can focus on it and the shame or fear or what his friends might say is lessened, take advantage.  Sorry it’s so long.  I hope it helps.  💚💚
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