F.E.A.S.T's Around The Dinner Table forum

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KLB
I wanted to start a thread that I can return to often and hopefully look back on to see progress made when I'm feeling terrible and at the bottom of the black hole. I hope that's ok.

Currently, S will eat very little. We are only getting 2-3 bites into him before we have to go via the ng. The amount he eats depends on how much exercise he feels he's been able to do and as he's supposed to be on bed rest, we're trying really hard to stop exercise/movement. It's SO difficult to stop someone moving when it's the only thing they want to do. His ED makes him take whatever opportunity he can to move/exercise. He's always on edge, waiting for an opportunity, he can get off the ward so quickly it's scary. Security have had to bring him back 4 times now. The medication doesn't seem to be helping the exercise compulsion and he doesn't really want to take the tablets so they tend to put it in via the ng.

The food safe list consists of the following, cooked using safe methods (grilled, baked, boiled, no oil, butter etc). He was eating these fully when he was over exercising but now he's only able to take a few bites, and brown rice is rapidly becoming a fear food.
Chicken breast
Turkey breast
White fish
Egg whites
Carrot
Broccoli
Spinach
Hot spices / chilli peppers
Water
Plain black coffee (occasionally)
Brown rice.

The fear foods list. The biggest ones are calorific drinks, sugary drinks, so-called junk food, fatty food, cakes, biscuits, sweets, fruits, cheese, yoghurt, milk, ice cream, oils, butters, nuts, cereals, bread, potatoes, pasta, white rice.......basically everything.

We're currently at 3000 calories a day mostly via ng but we're not gaining a kg a week at the moment. Well, we'll see what happens when he's weighed on Monday. If he hasn't gained a kg it will be increased to 3500. S knows it keeps going up and with it, his need to move/exercise goes up. We've discussed that if the calories are increased again we may need to start having two of us with him 24/7 because it's increasingly difficult for one to stop the exercise. I think we're going to end up on 4000 calories before we see consistent 1 kg /week gains which is three times the amount he was eating before. I'm concerned how s will cope with that. He's not being told numbers or anything but he knows it's going up each week.

I'm trying to take one day at a time at the moment, but I can't help thinking about what we'll do when he's discharged, and how we'll cope. Well, how I'll cope as hubby will be back to work in December. I want to try and get as much weight on him before hubby has to go, because from reading posts on here, ED behaviours reduce as weight goes on, which will make things easier. That's my hope anyway. It sounds so simple doesn't it?

The priority right now is get nutrition in, weight on and reduce calorie expenditure. I think we only have a few more weeks in the hospital before they'll have to discharge him. Medically, he's pretty much where he needs to be. I'm not sure we're going to reach a bmi of 18 before we go home but I hope we're close. It's currently 16. Fingers crossed that goes up on Monday.
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Ronson
KLB - I really hope it gets better for you. Hopefully a good gain this week. Yes the behaviours do improve with weight gain but they take time to improve.

I really hope that he gets to a good weight before discharge and can increase calories more significantly as discussed by others. I don’t know much about inpatient treatment but it doesn’t seem right to me that it is just about weight - if he needs to feed with ng because he cannot eat then surely he needs more help before he can go home.

Thinking of you often
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KLB
Thanks mimi. They've steadily increased calories by 500 each week to get us to 3000/day. Would a big increase not cause more stomach pain, nausea etc? He's already complaining of that, though I'm not sure how much of that is real and how much is psychogenic.

I'll ask the dietician on Monday if the increase can be bigger, especially if he hasn't gained anything. The last 2 weeks he gained half a kg, so a total of 1 kg, which is the same kg he's gained and lost since August, so it's obvious he needs more and like I said, I think he needs to be on at least 4000 to get a properly consistent weight gain going. Maybe more.
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KLB
Thanks Ronson. The problem is he's just on a normal medical ward in the hospital not an ED ward/unit. They're not ED specialists and don't really have the staff. They're great and really trying to help us but they'll discharge him once they're happy he's properly medically stable. The only somewhat useful thing about the exercise is that when he manages to give us the slip and runs off he pushes himself so hard and they then get worried about him medically so it helps keep him admitted. The other day he was brought back by security in a wheelchair and promptly fainted when he stood up to get back onto the bed. He'd been gone for about an hour and was drenched in sweat, clearly he'd pushed himself to the brink. That's given the doctors more ammo to keep him admitted, which we're thankful for. It's quite terrible to view it like that I know, but I want him to be in the hospital until he's gained more weight.

Sometimes I wish they'd just put him off to sleep so his body can rest and heal and gain weight, and then wake him up once hes ok again, but I know it's not that simple.
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Ronson
That must be hard - is there no possibility of transfer to an ed ward?
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scaredmom

KLB, 
Your instincts on needing more and more are correct. Some have had to get 6000+cal per day to get good weight gain. There is no magic, it is trial and error. The issue really will be when he is discharged home and how you will be able to maintain the high cal intake and increase more as needed. The biggest worry I have when I hear your story, is the exercise compulsion. That will be the bear, as it has shown you to be already.
Please look up mamabears posts, on high cal and exercise compulsion. It was quite intense and they did get through it and her D is truly in recovery, from what I recall on her last posts here. 

So although getting more in hospital is great, I just hope they can get you support at home-where the real work happens. I know you have great support with your brothers in law and their families, if I recall correctly. Please ensure you have a "family meeting" well before discharge with the teams, both inpt and out pt, to get a plan together for every eventuality. I wish I had done that. It would have given me some tools when I was floundering. 

Yes, the behaviours do get better with weight gain, but not immediately and not weeks but months. I am sorry for that, I just want you not to expect an instantaneous cessation of exercise and restriction. Some is learned behaviour with consequences ie more food and time that sweet sweet time. And tons of it.

I wish I had magic words to help you all get through this yesterday!

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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scaredmom
KLB wrote:

 It sounds so simple doesn't it?

We here all know that it isn't.
Love,
scaredmom
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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KLB
Ronson wrote:
That must be hard - is there no possibility of transfer to an ed ward?


They say there's no places available. If one becomes available he might get it but they'd prefer that we try to do it at home once he's discharged from the normal hospital as it's the best way and gets the best results. I'm not entirely sure that's true for all cases but I understand beds are extremely limited, and there are people ahead of him that are just as ill, if not more ill.
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KLB
Scaredmom- yes, I'm already thinking and worrying how we'll maintain good weight gain at home. A team meeting sounds like a good idea. We'll need to brainstorm a lot of ideas to manage the exercise compulsion. I'll look up mamabears posts, thankyou.
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scaredmom

Here are a couple:

https://www.aroundthedinnertable.org/post/allowing-exercise-7112593?&trail=25#gsc.tab=0
https://www.aroundthedinnertable.org/post/huge-calories-needed-5394128?pid=1269705167#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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Foodsupport_AUS
KLB one option to try to get your son to take oral food may be to get the intake via NG tube to be calorically greater than that offered orally. Many kids with AN will be calculating everything in their heads. They know how much is in the NG feed and they will look at a plate and try to calculate what is there. My D when inpatient never ate if she thought the food on the plate was higher calorie than what would come in the supplement or NG feed. I agree that making sure they are increasing his intake every few days until there is consistent gain is important. Yes his exercise compulsion will increase initially, a lot of kids develop the exercise compulsion once re-feeding starts. 

If you son is not able to manage regular oral feeds I would hope they will not be considering discharge to home. Yes FBT does have the history of best outcome for children. We also have to remember that one of the reasons that other treatments may not have as good an outcome is that the children who end up there were not able to be re-fed at home in the first place. 
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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debra18
One suggestion I have while your son is in he hospital is work on developing other interests and distractions. It is very necessary during refeeding. If he really has no interest in books, TV, electronics, etc, maybe you can do these things with your husband while he sees. He may want to participate over time. You mentioned a girl that visited him. Maybe she has some kind of hobby that he would show interest in if he knew she was interested in. The next time his friend comes to visit, ask him if he can bring a deck of cards with him to play with your son. The distractions are very important.
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Torie
KLB wrote:
They say there's no places available. If one becomes available he might get it but they'd prefer that we try to do it at home once he's discharged from the normal hospital as it's the best way and gets the best results. I'm not entirely sure that's true for all cases but I understand beds are extremely limited, and there are people ahead of him that are just as ill, if not more ill.


Good idea to start this thread.   

Sometimes it helps to list the positives:
He is getting the help he needs
Your h is off work
Your brothers-in-law are helping
He is taking some food by mouth
The exercise is very limited
He is taking meds whether by mouth or ng doesn't much matter

And then the concerns:
At the top of my list is that they want to send him home directly from hospital.  I urge you to fight for the bed in the ED center with everything you have, up to and including engaging a paid lawyer or however else one can obtain advice in your country.   I would also urge you to find out how other forum members flat refused to take charge of ED-kid when they wanted to discharge too soon.   It is so very unfortunate that the history seems to be repeating where the medical professionals do not take your concerns (and your son's symptoms) seriously enough.

I know CAMHS is underfunded and beds are in short supply.  I am sure, though, that many kids who are LESS ill than your son manage to get a bed.   Again, I urge you in the strongest terms to fight for that.  You are in the fight of your life and while it will get better, the getting better will happen extremely slowly.  And it is possible that it will get worse before it gets better.  I'm really sorry to use such stern words, but I feel very strongly that your son will need a high level of care for an extended period before you will be able to care for him at home, especially with your h's travel schedule.

I am curious what meds they are giving him.  I wonder if they are trying olanzapine.  It doesn't work for everyone, but it can be a big help for those who have a good reaction to it.  

Did they ever give him a proper diagnosis?

Hang in there.  So glad you have your h and bro in law to help share the burden. xx

-Torie
"We are angels of hope, of healing, and of light. Darkness flees from us." -YP 
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tina72
KLB,
For the moment I would not think about fear food at all but just try to keep him on track that food normally goes through the mouth and needs to be swallowed. Whatever he is comfortable with, just try to keep the variety up.
I am thinking about wether it would be possible to serve him carrots and spinat mashed? That would give you the opportunity to sneak some oil and sugar in.
My d was eating small portions of baby glasses at the beginning. Maybe worth a try? A carrot baby glass would give you the opportunity to sneak something in.

I agree with Torie, most important thing now is that he is safe. Second is that they make him gain weight with the tube. That is essential.
If he gains weight steadily with the tube he needs to learn to eat again and I agree that he is not in a state to take him home then. I would not take him home with a tube if possible.

Read and ask and get your SWAT team ready before you accept a discharge. It does not help anybody when he is back within a month.

P.S. I am wondering if they cannot give him some medication to make him more sleepy?
Keep feeding. There is light at the end of the tunnel.
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toothfairy
Hi KLB
I am with Torie  on this. I would fight and engage a solicitor if necessary for an  inpatient bed on an ED unit, preferably somewhere like Ellern Meade . 
From the information that you have given us so far , your son sounds like a severe case and my guess is that he will require a higher level of care for some time. 
Food is the medicine. Recovery is possible.
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tina72
Another idea, is he blind weighed? I would recommend that. It helps a lot not t feel guilty for food intake when they do not know their weight.
Is there a lable with calories on the tube feeding bag? Ask the nurses to take that off. No calorie labels. He might be counting all.
Keep feeding. There is light at the end of the tunnel.
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mid73
Totally agree with Toothfairy. He needs specialist ED unit help. You have already fought super hard with this before his admission. Lobby hard. X
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deenl
HI KLB,

How ya doin'?

Just thought I would give my perspective as the parent of a son who was in a non ED hospital and then home when still very ill.

My son did not have such a bad exercise compulsion but unbeknownst to us would sneak out of the house at 4 and 5 in the pitch dark to run before we woke up. All with compromised vital signs. My heart still sinks thinking about it. He also went missing for about 3 hours three weeks after being on an locked ward for specific suicidal plans. Also, not to be recommended. When ED son did come home we locked all doors and windows and kept keys in our pockets. But that's for the future.

If you have read our story, you will know that my son was IP at 12 on a general psychiatric ward. It was not a success. When he needed to go somewhere to really get refeeding started properly, I insisted that he went to the general hospital. For starters, because his psychiatric stay had been so traumatic. Secondly, the general hospital is 5 mins away so we all tipped in throughout the day and I brought all his food from home. Thirdly, he dismissed the fact that he had an ED (anosognosia) and this reinforced our narrative that he was ill and in danger of damaging his heart. Naturally, they could not supervise properly and could not follow through on the consequences of not eating. The plan had been that no food, progress to supplement, no supplement ng tube. But here they cannot place a ng tube by force unless someone is literally on death's door. So he got away with it! Anyway, here is were it was actually better. I got him back eating and I kept him eating and his dad shared the load when he could. I learned how to feed him, had no choice, couldn't leave it to the experts but all with the medical backup of him being on the heart monitor. This stood up in good steed when he came home. And remember, it gets much better and will not be this hellish, but 95% of getting better is done in the home.

I can think of no better example of parental determination and devotion that mamabear's story. Her daughter's presentation is so similar to you sons. Kartini Clinic blog is also wonderful for parents of young kids.

Your pathway will be different from all of ours, pick and choose what you think will be useful in your circumstances. But tune into your gut feel and trust it. Take the time to find your inner core strength. I have come out the other end and recognise in you lots of qualities that mean I believe you have what it takes to get there too, whatever combo of supports you choose. I know your son is blessed with all the adults in his life combining their skills to push him through hell and out the other side. Hang in there.

Wishing you continued strength and courage,

D

PS Please feel free to contact my by email if it would be helpful to you.
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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Torie
deenl wrote:
If you have read our story, you will know that my son was IP at 12 on a general psychiatric ward. 


My impression is that psych hospitals are generally really, really bad at dealing with ED.  What the heck is that about?  EDs are, after all, psych illnesses.  Does anyone know if they are any better at dealing with other mental health issues?  xx

-Torie
"We are angels of hope, of healing, and of light. Darkness flees from us." -YP 
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deenl
In fairness they did physically prevent him from killing himself when he was actively suicidal. That was pretty good.

And he has a very atypical presentation: male, no fat phobia, no body dysmorphia, no striving for muscles, no trauma, stable settled family, nothing that fit in their preconcieved vision of EDs. They got lost in the details and missed the obvious - he couldn't flipping eat!

I do know of someone who was IP in the same place for depression and parents found it fab. Maybe it was just us. Lol
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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KLB
So, S gained about quarter of a kg this past week so we are moving up to 3500 cals/day. We had a frank discussion with the dietician and she has agreed that he will be weighed twice weekly and calories adjusted more regularly so he'll be weighed again on Wednesday and if there's no gain another increase and so on. I feel better about it now and hope that quicker increases will mean the weight will start going on. We're also going to try what Food Support Aus suggested and make it look like the oral food is less calories than the ng feed and he'll need to eat everything on the plate or he will get the ng feed as well.

We're seeing CAMHS on wednesday too and I will be having a frank conversation with them too. I need to see some better progress and they need to help us to get that. The exercise compulsion is the biggest problem - I believe its the main driver behind most of the ED behaviours and I think we're not seeing weight gain partly because he's still burning too many calories. Its SO hard to control and stop it completely.

To reply to a few posts from others;
Mimi - thank you for the heat pad suggestion - I'm going to go shopping tomorrow and get one for him.

debra18 - all of his friends are also very sporty and play at a fairly high level......not to the level S was swimming but to a high enough level that it takes a lot of their time up. His best friend plays county level football and the "girlfriend" plays at regional netball level. His group of friends are all very sporty/athletic - I'm not sure if they have any non sporty hobbies. S has mentioned to the one nurse he will speak to that he doesn't want them to visit again so I'm not quite sure what to do about that. I don't want him to isolate himself but I also don't want to make him unnecessarily upset or anxious. Distraction wise, we can't play cards because he makes up exercise rules for certain cards and becomes agitated when he isn't allowed to do them. Other games, he does the same thing. He used to like to read but Im not sure he can cope with reading at the moment. Good suggestion about me and the hubby doing something while with him though. We could do that instead of trying to eat with him. I might get some jigsaws and things like that, maybe download some tv shows onto the ipad. Thank you.

Torie - thank you for pointing out the postives. I need to do that more often. It's so easy to focus on the negatives and overlook the positive things that have happened. The best positive is that he hasn;t LOST any weight for several weeks. I hear what you (and toothfairy, mid & mimi) are saying about getting an ED bed and part of my conversation with CAMHS on Wednesday will be about that. Hubby, though, is very reluctant for s to go to an inpatient unit but can't really seem to explain why. I dont see whats different about that and him being where he is now. S is currently on onlanzapine but I'm going to aks them to review that as I don't think its doing all that much. S was diagnosed with anorexia restricting type and compulsive exercise syndrome, what ever that is. I don't think thats a real thing is it? I mean, there's no official diagnostic criteria for that?


tina - thanks for the advice. We're going to try and get him to eat every 2 hours and we'll stick to safe foods for the time being but try to add some magical items to them. He is blind weighed but can tell that the calories are going up.

deenl - My son also regularly snuck out during the early hours to exercise. It's scary to think about. Anything could have happened. It's heartwarming to read your story and how you have come through to the other side. Thank you for sharing. 

I honestly can't thank you all enough for continuing to reply and offer your thoughts, advice and support

I always feel much stronger after coming on here and reading your posts. 
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KLB
This is his current weight chart and bmi chart. At least it's going up. Incredibly slowly, but up all the same. Click image for larger version - Name: IMG_1151.jpg, Views: 53, Size: 67.31 KB Click image for larger version - Name: IMG_1152.jpg, Views: 46, Size: 63.96 KB
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scaredmom
KLB,
It is good news he is gaining and you have a great plan on the ground.
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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Torie
Wow, so great to see his weight and BMI increasing!!  Yay team!!

You said, "H
ubby, though, is very reluctant for s to go to an inpatient unit but can't really seem to explain why."  I'm going to be very candid here because that is what I would want in your shoes.

One reason I feel so strongly about this is your h's travel schedule.  It is taking a whole team of family support (you, H, bro-in-law) in ADDITION to 24/7 medical team to be making this progress.   Take away the 24/7 medical, send your h out into the world, and what do we have?  A huge crushing burden resting squarely on your shoulders, and your son (I mean, ED) fully aware of that.  Oh dear, takes my breath away to even think of that.

So many times we have seen progress made in hospital (or residential or whatever) only to see all that hard work collapse when they are discharged too soon or with too little support.

I hope he can see this risk and can balance it against whatever risk he thinks he sees in admission to ED treatment center.  

I'm glad you will be able to discuss this with CAMHS.  Also glad you have a proper diagnosis (along with a bonus perhaps not-so-proper one?).  

Thanks for taking the time to update us.  I think of you often. xx

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

My son made airplanes and tanks from kits when he was in hospital. He also did origami. He had read before getting ill that if you make 1000 origami cranes your wish will come true. So he did and wished to get better and he has. I think that repetitive occupation for his hands was what helped. Crocheting and knitting are really common IP for the same reason. We also used a website to play would you rather (eg would you rather more time or more money) Adult colouring books and audio books are also popular. Maybe a fidget cube could help with the agitation.

Just throwing out some ideas. I'm sure you have lots of your own too.

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.
Quote

        

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