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deenl

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Reply with quote  #1 
Hi,

Our son has ARFID. Eats 1 slice bread morning, 1 slice afternoon, 1 bowl soup and slice cake in evening for last 2 months. Weight has remained stable at 27kgs at 150cm but he should be about 40kgs so he is super low weight.

3 months ago he was IP on a closed ward for suicide prevention and depression but looking back these were secondary to the ED. He stopped eating and drinking there for a couple of days. Then drank water ok but only ate sporadically. He lost 2kgs over 5.5 weeks there. They did do ng tube sometimes but he always pulled it out asap. He withdrew completely and was very emotionally and mentally unstable. I think he really scared them as they thought it was best to let him home to us

He is very intelligent and highly sensitive, also introverted and very independent minded. These are all traits he had before but they are now very exaggerated by the ED. He has absolutely no faith in doctors or medication and is traumatised by IP. 

We have been trying FBT ourselves for the last 10 days or so but he has not eaten a single thing we have given him. I have Eva Musbys book so I have lots of practical ideas and have tried everything. Results range from running away, hitting, thrown food, ignoring us, crying, you name it we've had it! We have stayed loving and supportive and understand that this is a reflection of how strong the ED is. Even with the threat of another IP hanging over him he can't eat. 

His mood is improved from the horror times and he has good relationships with his 2 brothers. Of course, he has total mixed feelings about H and I. H and I can't get on same page. H scared of LT emotional fallout, I want to re-feed hard and fast. 

I have to admit that we are scared about what might happen if he goes IP again or if we do LSUYE (thereby taking all the things that make life worth living again). I see totally the cycle of not enough food to have brain working but I am still scared of how bad it can get (by bad I mean total breakdown for kid) Who has been there and how did you get through?

Cheers

__________________
Mother of 13yo son restricting but no body image issues; inpatient 6 wks Sept/Oct 2015 but lost weight! So emotionally destroyed they agreed to let him home to us. Stable but no progress. Medical hosp to kick start recovery for Feb 2016. Slowly and cautiously gaining weight at home and seeing signs of our real kid.

Swedish proverb: Love me when I least deserve it because that's when I need it most.
Foodsupport_AUS

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Reply with quote  #2 
My D became ill when she was 13. She was desperately mentally unwell at the time. Depressed, suicidal, self-harming. She just wanted to die. She was a similar size to your son. I would also say that she was and still is a sensitive child. She always needed to be treated with gently. Harsh words or behaviours towards her seemed to have an enormous impact. 

I could not feed her successfully at home for a long time, and she did need hospitalisation. In total she was in hospital more than 11 months. That being said she needed that hospital. It saved her life. They did insist on feeding with NG tube if she could not eat (which was often). She is now much happier and healthier. She does have PTSD from the hospital. She cannot drive down the road near it. She refuses to set foot in it for any purpose. She has flash backs about things that happened to her. 

Despite this, she recognises that this is what was needed at the time. I would much rather PTSD than dead from anorexia, and so would she. She is learning to manage the flashbacks and the anxiety. She does not hate me, or hold it against me that I insisted that she stay in treatment. (For a while she did have very mixed feelings about this.)

There is nothing more important than your son increasing his intake, however you need to achieve it. It is horrible to watch the suffering of our children when they are ill. There is no easy way through this. 

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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.
deenl

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Reply with quote  #3 
Thanks so much for the reply. Can't believe how hard this is.
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Mother of 13yo son restricting but no body image issues; inpatient 6 wks Sept/Oct 2015 but lost weight! So emotionally destroyed they agreed to let him home to us. Stable but no progress. Medical hosp to kick start recovery for Feb 2016. Slowly and cautiously gaining weight at home and seeing signs of our real kid.

Swedish proverb: Love me when I least deserve it because that's when I need it most.
Sotired

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Reply with quote  #4 
We often had to hospitalise our beautiful d.she would just stop eating and drinking completely and I could sit til the cows came home and it would make no difference.bright,smart,funny,sensitive,intelligent...so many times parents write these words at the same time as they have to write their precious child has anorexia.
The rule of thumb for hospital is 24 hours with no fluid and he goes to hospital.48 hours with no food,he goes to hospital.there they must do all the testing necessary and you may well have to prepare for your s to be fitted with an Ng tube and he will stay in the hospital.if he fiddles with the tube or tries to harm himself he will need to be placed under watch.this is a person whose only job is to watch your child to make sure they are kept safe from themselves as ed can make them hurt themselves.
This is a really hard part of your child having anorexia.sometimes you just can't wait,hospital has to happen.if it was me (and this is just my opinion,but we have a super stubborn anorexic here at my house)I would be getting my gp to refer us to hospital straight away.i just don't think you can wait any longer.
Good luck in getting there soon,

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Sotired42
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Reply with quote  #5 
Hi Deeni, this is the thing about ed s that is so serious they are life threatening. We really tried it feed our d at home but she couldn't take in enough nutrition and needed admission I know now that no matter what I would have done at home we wouldn't have e been able to do it . We are now back at home and 10 months later trying to weight restore. This is such a difficult time but you will get through it .
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Daughter started restricting in February 2014, tried re feeding , hospital admission 4 1/2 months weight restored started restricting post discharge, back on meal plan full supervision weight restored april 2016. Still needing full supervision for meals. 
Tali97

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Reply with quote  #6 
Are your only options for IP the closed ward? Has your GP seen him and what does he think? 

When we got to the point when my husband and our GP realized how serious my sons situation was we were being urged to take him to the emergency room, by the family GP. (This was due to Canadian health care problems) He too does not like doctors and due to past experience with the has a very severe needle phobia. In the end we gave him 3 days to see if he could eat enough to stay out of the hospital, but he was unable to manage. He was admitted to the children's hospital for 6 weeks with an initial diagnosis of failure to thrive. On admittance to the hospital he was tube feed and this continued for a few months while out of the hospital until he could eat enough on his own to maintain weight.
This kid had severe malnutrition due to his limited diet, he has osteoporosis which cannot be reversed by a calcium rich diet. 
My son hated being in the hospital despite having a parent at his bedside 24/7, but he now has very little memory of being there. He total accepts that he had to be there for his health and now forces himself to eat enough each day to avoid ever going back. He has constant nausea and vomits often. 
We could never have weight restored without this hospital admission and the care from the medical staff that he received in the hospital and after release from the hospital. They saved his life. 

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18 year old boy (Gluten Free/Dairy Free 2005)
 IP - March/April 2014.  ARFID.
 2015 - Gastroparisis
Torie

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Reply with quote  #7 
As you and the others have said, one way or another he needs to eat. End of. Since he can't eat enough at home, what options are there for IP? Maybe an alternative to the first place, who elected to send him home when they found out how hard it is to get enough nutrition into an Ed-kid. Someone here (cadn't remember who) was taught to fit an NG tube and did that at home. Possibly that might be an option for your family - and maybe it would motivate him to keep tube in if the alternative is IP?

Really, really sorry it's so hard. I hate Ed.

Hang in there.

xx

-Torie

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

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Reply with quote  #8 
Thanks so much for the replies

I have a fab ED specialist pediatrician who he sees weekly. What a godsend! She is very aware of the interaction between the body and mind and so she is looking at all the options for us.

The clinic he was in before was a closed ward for teens with psychological probs and also EDs. But they misdiagnosed him as being on the autism spectrum (doesn't surprise me given what they observed but as I said you don't develop autism/aspergers at 12!) and didn't treat the ED. H & I didn't understand what was happening to our son. All I say is Thank God for the internet and forums like this!

As the suicidal plans and thoughts and the depression are much reduced now, the urgency is his medical condition. He is slightly compliant with medical care so we will try to get him into a childrens hospital. If he goes completely beserk (leaving hosp, biting, etc) then the only option is the old closed psych ward.

He did eat an extra bowl of soup today! But one swallow does not a summer make. God, I've become so cynical.

Sotired, thanks for taking the time to reply to me. I don't know where you find the emotional energy to reach out to people but thanks so much. We did want to bring him to the A&E two days ago as his BP was too low (we have BP monitor at home). The hosp have been briefed by pediatrician so we rang to say we were coming. They checked file and rang our off-duty pediatrician to say they were too chicken to treat him! The BP was under the safe limit but not into really dangerous territory but I was trying to stay firm in the 'don't eat, vitals go down, we go to A&E' message and they chickened out. No wonder the kid thinks he is infallible when medical emergencies are not treated. 

Anyway, I sobbed on phone to my mum in Ireland and I am feeling stronger now! Poor grandparents trying to support the parents, ED kids and not leave the nonED kids out. They deserve medals too.

Thanks again everyone

__________________
Mother of 13yo son restricting but no body image issues; inpatient 6 wks Sept/Oct 2015 but lost weight! So emotionally destroyed they agreed to let him home to us. Stable but no progress. Medical hosp to kick start recovery for Feb 2016. Slowly and cautiously gaining weight at home and seeing signs of our real kid.

Swedish proverb: Love me when I least deserve it because that's when I need it most.
Psycho_Mom

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Reply with quote  #9 
Hi deenl,

I'm sorry your family is having such a hard and frightening time. This illness is truly the worst, especially when you have no professional support (as it doesn't sound like you do? A hospital that can't or won't keep an ng tube in and where he's shown he will lose weight, isn't a really viable option.)

Let me just comment on how it sounds like you're trying to feed your son, in hopes that it might help. To me, it seems like you are doing two conflicting things, and thereby things aren't working very well.


1. "We have been trying FBT ourselves for the last 10 days or so but he has not eaten a single thing we have given him. I have Eva Musbys book so I have lots of practical ideas and have tried everything. Results range from running away, hitting, thrown food, ignoring us, crying, you name it we've had it! We have stayed loving and supportive and understand that this is a reflection of how strong the ED is. Even with the threat of another IP hanging over him he can't eat. "

2. "I have to admit that we are scared about what might happen ...if we do LSUYE (thereby taking all the things that make life worth living again). "

OK. So, what is actually happening at meal time? You're giving him a meal and calmly telling him to eat it, and then he either runs away or hits or screams or whatever. And then what? Then he goes off to school or activities?
What that's telling his ed is that his actions are WORKING. Running, screaming, hitting are effective means of avoiding eating. Therefore he will do them again and again and again.Of course your son won't eat if he doesn't have to. If he can go off and do his life anyway. Of course he won't eat.
There needs to be an IMMEDIATE consequence for not eating, and an IMMEDIATE reward for eating. The threat of IP is far away; generally, bigger farther away rewards or consequences don't work to change behaviors. The terror is NOW; therefore the pressure and the reward must be NOW. The immediate consequence of not eating is that he must to keep trying. The food doens't go away. The immediate reward for eating is that he gets to go off and do something (fun and sedentary).
Trying to do FBT without a logical immediate consequence  is like saying "You MUST eat, but if you don't, oh well, nothing will happen." No one would do anything if they didn't get a reward for it (would you work without a paycheck? x Would you put your coat on unless you knew you'd be cold otherwise? The only reason I wash the dishes is because the clean counter gives me a tiny bit of pleasure) or a consequence (would you drive the speed limit all the time if no one gave tickets?Would a kid do homework without grades or tests?) Allowing a sufferer's life to go on without adequate nutrition is REWARDING him for starving.

LSUYE is  not " taking all the things that make life worth living again. " A logical consequence of not taking in any energy is that you're not well enough to expend any. As SOON as your son finishes a meal, he should be allowed to do something he enjoys.

Does that make sense? I'm sorry if I've incorrectly understood what you wrote, or am sounding adamant. It doesn't sound like you have other options in place now (we can help search for some; ask on the provider's page for your area) and I want this to work for you. 


best wishes,

ps. I wrote this before your last post. Glad to read you have some professional support and the possibility of IP. Have you talked with your pediatrician about the possibility of using an anti-anxiety medication like Olanzepine? For short term use to help with initial refeeding I have read it can be extremely helpful.

__________________
D diagnosed with EDNOS May 2013 at age 15, refed at home Aug 2013, since then symptoms gradually lessened and we retaught her how to feed and care for herself, including individual therapy, family skills DBT class, SSRI medication and relapse-prevention strategies. Anxiety was pre-existing and I believe she was sporadically restricting since about age 9. She now eats and behaves like any normal older teen, and is enjoying school, friends, sports, music and thinking about the future.
iHateED

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Reply with quote  #10 
Hi Deenl,

You stated "Results range from running away, hitting, thrown food, ignoring us, crying, you name it we've had it!"   Well I can tell you we had exactly the same reactions!  I still have dings in my walls from where the blender was thrown.  We had whole pizzas turned upside down on the kitchen floor, food was sprayed with Lysol or another household products so that it couldn't be eaten by anybody.   It was horrible but I can tell you it does and it will get better.   Your son will recover!  It just takes time, lots and lots of time, and lots and lots of food.  Everything else is secondary right now.    We had the depression and suicidal thoughts too but they were all symptoms of her brain being malnourished.  We validated the depression but really didn't focus on it.   Once nourished again, the thoughts went away and our D has very little memories of that time in her life.  I am thankful for that because they were awful.  She became so violent towards us at times.  Punched holes in walls with her fist.  On one particularly bad night, we told her if she didn't calm down, we would call the police.  We did, they came, not much help as you can imagine since they just told her, well, you need to eat if that's what your parents want!   But the embarrassment of it stayed with her for the next time we told her we would call.  Thankfully we only called them just once!

What I'm trying to say is that everything else is secondary right now.  Your main job is to feed 3 meals and 3 snacks each and every day.  I really like how Psycho mom described what LSUYE can look like.  That is exactly how we did it too.  All rewards and consequences were immediate.   Frame your wording in the positive, such as When you eat breakfast, I will take you to school, instead of in the negative, If you don't eat breakfast, you can't go to school.    Try not to make rewards for the future, like if you eat all week, you can do your activity on Saturday.  If a meal goes bad at the beginning of the week, there is no incentive to keep going until Saturday.    Your son (if he is healthy enough) can still do non-sport activities if you want to keep him engaged with friends and life.  Perhaps volunteering at a local animal shelter or something low key would interest him and motivate him to keep eating.  

I am sorry for how hard this is for you right now but I can tell you that it does get better.    If you need help with what to feed him, please ask.  Share the foods he likes and we can come up with some variations to add more fats and calories to his diet.    Sending hugs! 
deenl

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Reply with quote  #11 
psychoMom and iHateEd (identify with both names btw)

What you say makes total sense. The trouble is that they are not working in practice. We have been doing that all the time. We have followed him around for days with the food, we allow distractions while eating but no distractions from eating. We have done the 'when you've finished (meal) we'll do (activity)' and he just shrugs and accepts the consequences as they come.

We do still do some activities that are not linked to food. I do feel that he needs to feel we love him no matter what. 

This is one very strong, stubborn kid. He didn't just have suicidal thoughts, he had the letters written and was on his way to the railway. He didn't just want to die, he was on his way to do it. And his mental state in the clinic was horrific. They really didn't know what to do, he resisted all treatment efforts.

I will, however, go off and think again about LSUYE. Due to family history H is very scared we will tip him into a more serious mental illness if we push too hard. I disagree but understand his fears and there is no way to know for sure. They do however mean he cannot commit to LSUYE. Rocks and hard places everywhere.

Thanks for all the ideas and for being my sounding board.

__________________
Mother of 13yo son restricting but no body image issues; inpatient 6 wks Sept/Oct 2015 but lost weight! So emotionally destroyed they agreed to let him home to us. Stable but no progress. Medical hosp to kick start recovery for Feb 2016. Slowly and cautiously gaining weight at home and seeing signs of our real kid.

Swedish proverb: Love me when I least deserve it because that's when I need it most.
Torie

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Reply with quote  #12 
Quote:
Originally Posted by deenl
....Due to family history H is very scared we will tip him into a more serious mental illness if we push too hard. ...


Sorry, but what does your h think will happen if you don't push harder? Does he understand that eating disorders have the highest mortality rate among mental illnesses? 

The longer he is at such a low weight, the more entrenched the illness will become; the sicker your s will be.

Rocks and hard places indeed. But you have to get him to gain weight. The only way out is through. End of.

Hang in there. It really does get better.

xx

-Torie

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

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Reply with quote  #13 
The hospital were too chicken to treat him ????ask them if a malpractice suit is easier to treat!
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Sotired42
Sotired

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Reply with quote  #14 
Take him to the hospital hon.he needs to be there.tell him he gets in the car quietly and you go peacefully or he goes in a police car but either way,he goes.you have tried your guts out at home,it is simply too dangerous to continue.he needs an Ng tube fitted.tell him again that this will be done awake or under sedation,but it will be done.be a pitbull mother at the hospital,tell them what you need and that it must be done now.i know it is so hard to do this,I know.but we fight because we have to,not because we want to.there are medical guidelines that the hospital must follow in the treatment of anorexia and they cannot refuse your son treatment.if your son has the right to refuse treatment then you need to put him under the mental health act where he can and must be treated against his will.you will have a law like that in the Netherlands,every developed country would have this I hope.as you know,we have done this to our d,with the exception of sedating her which I would have done if I had to.we certainly had to threaten the police-I had rung the number before she gave in.you can do this deenl,you absolutely can.have faith,hold the line.you can win this battle.

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Sotired42
mamabear

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Reply with quote  #15 
What you describe sounds like your son is on the edge of life. Five feet tall and 60 pounds? If I have that correct?
This is a massive life and death situation. He needs to be in the hospital and tube fed. If he is going to pull it out then he needs to be sedated and possibly restrained.
If you indeed have this fabulous ED specialist then this person should be helping you get him immediately admitted.

To be brutally honest all of the behaviors you have described sound pretty normal for this vile mental health illness. This IS the most "dangerous" mental health illness with the highest mortality rates. I would say 9.9/10 of us have had plates thrown at our heads and suicide threatened ( or attempted) and all of it. We all think in the beginning that our child is " extra stubborn" or difficult or whatever. All of these kids are incredibly bright and stubborn.

He needs to go NOW. I'm so sorry if I sound too blunt but his heart could just stop at any time.

Is there something I am missing?


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Persistent, consistent vigilance!
goodenoughmum

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Reply with quote  #16 
Hi deenl,

At 27kg he is is medically unstable and needs to be in hospital. When was the last time his pead saw him. Surely she would of had been admitted???????
I agree with mamabear and Sotired - take him to ER.

Good luck, thinking of you xx
Psycho_Mom

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Reply with quote  #17 
Oh dang I misread the cm. I'm still not good with cm and kg.
I'd agree with mamabear. 
What is your son's orthostatic heartrate? How recently has it been checked?

The "interactions between body and mind" in the case of ed are, bluntly, that the mind won't work unless the body is fed. End of. A starved brain cannot function, and there is absolutely no point in talking to it or doing anything other than feeding it. Especially if weight is so low that the heart could stop at any moment. 

And yes, the behaviors you describe are "normal' for this illness. Flying plates and swearing and stubbornness and intelligence and  perfectionism.

Sigh. I'm sorry this is so hard. Please keep us updated.

__________________
D diagnosed with EDNOS May 2013 at age 15, refed at home Aug 2013, since then symptoms gradually lessened and we retaught her how to feed and care for herself, including individual therapy, family skills DBT class, SSRI medication and relapse-prevention strategies. Anxiety was pre-existing and I believe she was sporadically restricting since about age 9. She now eats and behaves like any normal older teen, and is enjoying school, friends, sports, music and thinking about the future.
Kali

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Reply with quote  #18 
Deenl

My heart is breaking for your family and your son.
Please take him to the emergency room. Since he did not do well in the last hospital he was in take him to a different one and a different dr. He needs immediate medical intervention. Our dr. told us that 24 hours with no food is an emergency room visit. 

The unfortunate truth is that sometimes our loved ones are too ill to respond to FBT at home and when that is the case, they are in physical danger and they need to be under the care of medical professionals who are experts in ED. 

So sorry.

Kali



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OneToughMomma

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Reply with quote  #19 
You say, 'Results range from running away, hitting, thrown food, ignoring us, crying, you name it we've had it!'

and yes, I agree with the others.  This is normal normal normal.  3, 5, 6 hours for a meal?  Yes.  Spitting, biting, screaming? Yes. Running away, trying to jump from a moving car? Yes.  Attempted or threatened suicide? Yes.

Your son is very precious and special, but his ED is completely average. 

And I think he is very sick and should be in hospital.  In my layperson's opinion, he would be seriously compromised medically.

If you can't feed him and his team can't feed (NG) him, then you need a new team NOW.

Please get him assessed.

xoOTM

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D in and out of EDNOS since age 8. dx RAN 2013. WR Aug '14. Graduated FBT June 2015 at 18 yrs old. [thumb]
Torie

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Reply with quote  #20 
In case I wasn't clear earlier, I agree with mamabear, sotired, GEM and PsychoMom that your s needs to be in the hospital - one that is good at dealing with ED.  It's hard to imagine him getting the needed nutrition at home.  As you have seen, the situation only gets worse the longer they stay at low weight.

So sorry for all the havoc this vile illness wreaks. Ugh.

Hang in there.

xx

-Torie

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

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Reply with quote  #21 
He eats every single day. 2 slices of fruit and nut bread, soup with loads of veg, and fruit and nut cake with almond paste and plenty of water. He is seen by ped every week and we monitor his heart, BP and temp constantly at home. He has bloods and EMG done. Very sick but very well monitored.

Last time we took him to A&E we had 6 weeks of uselessness. Everyone running around (incl us) in a panic like headless chickens. And at the end of all that S had lost another 2kgs and the bleeping Ed was stronger and our real kid traumatised. If we go IP I want it to do some flipping good this time. So personal stories of what helped and didn't help are useful.

I wanted to take him to A&E other day more to let him learn the consequences of refusing a meal than that he was in immediate danger. I am in constant touch with doc who is super experienced with ED. But I do think S is living in limbo long enough now; it is time to get properly better. The question is how when FBT really hard at home.

Will keep trying and looking at options. The next few days should see some decisions made.

Thanks for all the support.


__________________
Mother of 13yo son restricting but no body image issues; inpatient 6 wks Sept/Oct 2015 but lost weight! So emotionally destroyed they agreed to let him home to us. Stable but no progress. Medical hosp to kick start recovery for Feb 2016. Slowly and cautiously gaining weight at home and seeing signs of our real kid.

Swedish proverb: Love me when I least deserve it because that's when I need it most.
Torie

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Reply with quote  #22 
Quote:
Originally Posted by deenl
....So personal stories of what helped and didn't help are useful.

....I am in constant touch with doc who is super experienced with ED. But I do think S is living in limbo long enough now; it is time to get properly better. The question is how when FBT really hard at home.


Sometimes FBT doesn't work until after an effective IP/residential program. 

Can your good doc identify the best IP/residential program that you would be able to sign up for? 

xx

-Torie

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

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Reply with quote  #23 
I am sorry that your S is having a really hard time (huge understatement, I know).

I have edited my oriniginal post, as I posted a long waffly story of hope, but actually in hindsight, feel that wasn't right (for now). You dont want to waste time reading my story, you can do that another time. What you need now is urgency. The ladies here are right, you need your son to be assessed. Please take him to the childrens hospital.

We have all been where you are now. We get it. It is bl**dy scary.

__________________
17 yo D

Dx AN Feb 2015 (Aged 15). Pre-existing low self-esteen and high anxiety.  Awaiting  assessment for pre-existing Social Communication. 

2015: 3 x medical hospital admissions. 1 month in IP.
2016: 3 x hospital admissions. Currently refeeding at home under CAMHS and Psych. Waiting for one to one Therapy around anxiety. 

On particularly rough days when I am sure I can't possibly endure, I like to remind myself that my track record for getting through bad days so far is 100% and that's pretty good. [Author Unknown]
IrishUp

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Reply with quote  #24 
Thank you, mamabear, you stated a concern I share.

deenl, I am *highly* concerned and worried for your situation. I realize that posts on the internet to strangers can but poorly convey the complexity of the situation you are facing and all the details of what you are trying to do. My prime concern is that the food intake and the weight you are describing, are VERY red flag symptoms that your son is at risk for serious and irreversible complications of malnutrition, the most worrisome of which is sudden cardiac death. I am not sure what you mean by "very sick".

In the US, a lot of pediatricians are called "ED experts" only because they will take referrals of patients who have AN. But in our experience MANY of these doctors do not fully understand the medical management guidelines for ED. So just in case, I am attaching a pdf of Professor Treasure's Guide to the Assesment of ED's (from the UK), and the Academy of Eating Disorder's "Purple Book", which is analogous from the US. (pdfs of documents at the links)

http://www.kcl.ac.uk/ioppn/depts/pm/research/eatingdisorders/resources/GUIDETOMEDICALRISKASSESSMENT.pdf
http://aedweb.org/downloads/Guide-English.pdf

For other languages: 
http://aedweb.org/index.php/education-publications/education-guidelines-2

These guides cover what tests and evaluations need to be done, and which kinds of results raise concern. The difficulty with malnutrition is that our bodies are designed to try to stay "normal" for as long as possible - we are designed to survive periods of little food like winter or droughts or something. By the time that lab values get very abnormal, it means the body is in very bad shape, and has been consuming it's own cells for nutrition!

And if your son reports fainting, lightheadedness, loss of vision, take him to the A & E right away - that is a medical emergency in his condition.

My other thought is that you reported your son has ARFID, and was "HSP", which I take to mean there are sensory sensitivity issues (which is perhaps where the autism diagnosis fits in). This very likely needs professional assessment as well. Trying to do home refeeding* or as it is called "nutritional rehabilitation" when there are other complications or pre-existing conditions that need professional evaluation and/or treatment, is ENORMOUSLY difficult; so much so, I worry that you would be burning yourself out trying to do something you haven't quite got all the information and tools you need to complete! Any sensory issues around food, eating, chewing and swallowing are going to make getting enough food into him, very close to impossible, unless you are ALSO working on those things. Professional guidance on working with the sensory sensitivity will likely be key to succeeding in the long run with refeeding.

I don't know what treatment is available to you, but I am linking to some resources on ARFID:

1. A talk by Dr. Debra Katzman about ARFID, including some guidelines for potential treatment (it is not clear yet what works best)
https://www.adolescenthealth.org/SAHM_Main/media/sahm2015/Speaker%20Handouts/Wednesday,%20March%2018/K-Katzman_Everything-You-Wanted-to-Know-About-ARFID.pdf

2. Two blogs from Dr. Julie O'Toole of the Kartini Clinic on ARFID/Selective Eating. I know they are in the US, but they may be worth contacting & consulting about your son, if you are having difficulties figuring out how to go forward. Dr. O'Toole has a long experience with this sort of eating disorder.

On Selective Eating and ARFID:
https://www.kartiniclinic.com/blog/post/selective-eating

On Distinguishing AN in a younger child from ARFID: [Generally speaking, the average age for ED onset is 15-16 years old. Patient 12 or younger at the time symptoms start are considered "early onset"]
https://www.kartiniclinic.com/blog/post/the-very-young-child-with-anorexia

3. Some more information on sensory sensitivity, anxiety (which looks like stubborness, strong-mindedness & self will, but is actually not) and selective eating:
http://eprints.aston.ac.uk/20974/1/Relationships_between_sensory_sensitivity.pdf


*"FBT" is a formalized treatment protocol, using Lock & LeGrange's methods. People often use this, when what they mean is that they are doing "nutritional rehabilitation", either on their own





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IrishUp
trusttheprocessUSA

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Reply with quote  #25 
Oh mom how awful. This illness and it's mind-bending symptoms and behaviors keep many from understanding the real danger......cardiac arrest. Your son is in trouble - cardiac trouble. My son was in trouble too. Your boy's resting heart rate must be so low. His heart is trying to keep his body operating. Without enough fuel it is a dangerous struggle.

Help support his weak heart by:

Turn the heat up in your house
Put him in a down vest and keep him warm.
Keep him from activity.

He needs expert care. I pray you can find it ASAP.

__________________
Son diagnosed @ 12.5 yrs old with Severe RAN 2/11 - currently in remission. Co-morbids - anxiety, Active restriction for 3 months. He stopped eating completely 2x. He needed immediate, aggressive treatment from a provider who specialized in eating disorders, adolescents and males. We got that at Kartini Clinic. WR since 5/11 continues to grow...
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