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

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Jeanette

My gd has just gone into IP after being diagnosed with AN in July. We noticed problems after a week long stomach bug.  Things quickly went from bad to worse, restricting more and more as the ED took over her brain. Her personality changed from the kind, caring girl to being very angry and aggressive towards her mum at meal times and then afterwards.  She put on small amounts of weight a few times in the beginning but then recently has been losing at every CAMHS weigh in.   
Since going into IP she seems calmer and settled but not like her normal self.  She is normally a quiet girl and says that no one speaks to her but she’s not bothered.  This change has happened overnight.  The meal plan is less than the one at home with fruit and water being snacks. She is only eating half the meals then they offer her a replacement drink which she doesn’t have to drink. She thinks this is good. We are assuming they will increase the meal plan gradually but don’t seem to encourage her to eat it. We are guessing that the ED is pleased with this and that is why she seems quite happy to stay there.  Obviously, we are all heartbroken as it seems like she would rather be there than at home.  She will probably fight them more once they start increasing the meal plan but, as she is there voluntarily, they only use NG tube  as a last resort when they would then section her.  Does this sound right?  We all feel so helpless, especially my d.   

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Enn
Welcome!
The main goal of IP is to get the weight up. I would suggest a formal discussion with the team about exactly how they will be doing that. 
I see you are on the UK and from what I have seen here each IP is quite different and not always good.

My d preferred IP to home. It was really odd. It gets better with food and time . It is just part of the illness. 
The anger and difficult behaviours are ED.

i am sorry this is happening to your gd. Do you think her parents may wish to join the forum for support as well? How old is she?
How can we help you? 
We wish to support you bu sharing our experiences. 
We wish to pass on our EDucation to help.


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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Jeanette

Thank you for your reply.  My gd is 15. I have been wanting to write here for a while but was scared my gd might see it.  We are now desperate as it seems like she won’t want to come home but I did think this might be normal ED behaviour. I will ask my d about joining or she could take over here.   We will arrange to speak to the unit about how quickly they increase the plan. 

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Foodsupport_AUS
Welcome to the forum, sorry that you have had to find your way here. What you report does sound very concerning as regards to their management of meals and eating. It does not sound like they are aiming for weight gain at all. I agree with scaredmom that questions need to be asked as to their goals and plans. The UK does seem to sometimes use the mental health act before offering nasogastric feeding for missed meals. That being said that those of us who have been around for a while have found that good inpatient care is aiming for a gain of around 1kg per week with clear consequences for missed meals. 
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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tina72
Take the marsipan guidelines with you. In IP they should not lose weight, a weekly gain of 500-1000 g should be standard. And it is very counterproductive when they do not aks her to drink that replacement drink. No wonder ED is happy there...

Fruit and water for snacks??? REALLY? That is not normal at all...
Keep feeding. There is light at the end of the tunnel.
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tina72
Jeanette wrote:
I will ask my d about joining or she could take over here.  


Maybe I do understand that wrong but pleae do not let your d see this website! YOU are the one that needs the information here and she should not know what tipps and tricks you get here!
Keep feeding. There is light at the end of the tunnel.
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Jeanette

Thank you both.
Sorry, I probably didn’t make it clear enough that my d is the Mum! 

Could you provide a link to the marsipan guidelines please. 

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tina72
Sorry, my fault also, I did not know that gd is granddaughter, english is not my mother tongue.
YES! Please ask her mum to come here, she will get a lot of help here!
I hope this is the correct link, if not please can someone from UK help?
http://www.valeofyorkccg.nhs.uk/rss/data/uploads/mental-health/children/gp-guidance-in-managing-eating-disorders-in-children.pdf
Keep feeding. There is light at the end of the tunnel.
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Jeanette
Things have deteriorated so much today.  Her older sibling visited her and was shocked and upset at how ill she looked since yesterday.  She is not eating there and is not encouraged to. They have said they will have to section her soon.  She is copying the behaviour of others and is emotionless and blank.  We had already requested a transfer as it is so far away and earlier we had the good news that a place might be available soon.  Now this has happened and my d is distraught.  CAMHS have said she could still be moved if she had already been sectioned but we just feel like bringing her home. But how do we know what she’d be like after deteriorating so much?  What do we do? 
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Enn
I think you need to get her out of that treatment facility if they cannot get her weight up. This is serious and urgent. I really feel that a proper meeting be organized and that you write everything down. 
The only treatment right now is eating, feeding anyway possible. Is this a proper ED unit? Their job is to keep her medically safe and if they do not get calories into her, well, that is not right. 
Once she gets food then her brain will heal.
First and foremost is nutritional rehabilitation. 
I am sending you a hug. This illness really sucks it out of us. 
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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Jeanette

Yes it is a well known eating disorder unit, I don’t want to name them while she is in there. We are visiting tomorrow and will insist on speaking to someone in authority.  I think the choices will be they section her and use NG tube or we bring her home, but if she doesn’t eat at home now she will be sectioned anyway and will have to go where there is a bed. That could even be back there if that is the only place.  We have assessment at another place next week so the aim will be to do whatever will keep her stable until then.  How did we get to this in 48 hours?? 

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Enn
A couple of suggestions if that is oK with you:
1: Put all your requests in writing. That way it is part of you gd's legal medical chart and keep copies for yourself
2: Insist they have a family meeting with all that are part of the team. The doctor or whomever makes the medical decisions has to be there
3: Put a time line ie a due date to have that meeting. For example. "I expect to have this meeting prior to the weekend."
4: Write out all your questions and I would suggest the questions are about how they will feed her.Why have they allowed her to not get her chemo -ie food? What exactly are their protocols (in writing). Who is in charge and when that person is away who is next in charge.  There should be no gaps in care while IP- EVER!
5: What is the goal of weight gain?Should be 1 kg or 2 per week. IP they have no excuse  not to get the weight on ASAP
6: When you have the meeting someone should document all the parties present, name and rank and all that was discussed.
7: DO NOT leave without a clear plan in place at the end of the meeting
8: Put the notes of that meeting in your gd's chart. That way all can refer to it when and if they get off track.


I am sorry I feel I need to spell it out. I have seen so many families as well as myself , trust  the team a bit too much and then when the child is very ill, it is harder to get back on track and organize the treatment.  As we are the families of these sick kids and we trust the professionals, we need to take some control. When we seem very savvy with the medicolegal parts, they seem to stand to attention a bit better. I say do what you have to to get them to do their due diligence for the patient. 
I have learned the hard way to do this right from the get go of illnesses in the family. That way it is very clear to everyone that you are part of the team.
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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Kali

Hi Jeanette,

This does sound concerning. 
It may be that the illness is so strong at the moment that the team at the inpatient facility is having difficulty getting her to eat and in that case perhaps she may need a feeding tube for awhile in order to put some of the weight back on. Hearing what the team there has to say and what they can suggest in order to move forward is very important.

You and your daughter can prepare all your questions ahead of time if you think that will help, and write them down and bring them with you when you speak with someone in authority tomorrow.

Hoping for the best for your both daughter and granddaughter. And so impressed that you are involved and helping your daughter cope with this. I'm sure the two of you will be able to get some answers from the inpatient team, and come up with a plan together to help your granddaughter.

warmly,
Kali

Food=Love
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Foodsupport_AUS
I can only agree that time is of the essence. I find it frustrating that the UK seems to follow this line of using the mental health act for even very young children before NG feeding - fortunately the hospital my D was admitted to was very willing to NG feed. Ideally this should be enacted no later than tomorrow, knowing that she has no choice but to eat will help her to move forward either way.Their waiting is just allowing her to get sicker. A week is far too long at this point.
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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kazi67
Our d didn’t get the NG tube straight away either
It seemed frustrating to me at the time as she was SO sick but when she did in fact get it she agreed rather than it being forced
we didn’t question their ways as by the time my d was admitted she was a skeleton and medically unstable and I didn’t know what to do 
she need the expert help that I couldn’t give her at home 
my d also was admitted voluntarily maybe this is the difference? But I’m not sure 
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Kookaburra

Hi Jeanette,

I hope your UK team can get themselves together to help your gd. I’m in Australia, my 16 yo d about to come out of 4 weeks IP and almost 10kg of weight gain. The NG tube was non negotiable, no need to section for it here. She has had it in almost the whole time - they feed the kids heaps during the day (they are watched like hawks) and have the NG tube feeding them all night. If they don’t eat a meal or a snack they drink ensures. If they can’t eat/drink they get it NG.

My d HATES it in IP, reckons she won’t go back ever. (We will see, she still openly says she doesn’t want to recover). I’ve no idea if the approach here is any better than slower approaches, but what you are getting is letting the ED get stronger while her health deteriorates.
Good luck, your d lucky to have you helping her, it’s such a full-on intense illness. 

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Jeanette
Thank you all.  We are just travelling there now,  2-3 hour journey depending on traffic.  We have a list of questions.  Will update you later. 
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Torie
I'm so glad you are on your way there.  Your d and gd are very lucky to have you.  Best of luck today. xx

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

Got home an hour ago.  Gd didn’t look as bad as we were expecting after yesterday.  She was more alert.  

We spoke to a doctor and told him our concerns.  Some of the things he said did sound reasonable but we still feel it could have all been handled better.  Regarding the meal plan he said that they don’t go in too quickly to avoid refeeding syndrome.   But if they had listened at admission they were told that she had been eating carbohydrates and had pudding after meals and for snacks.  Admittedly she had been restricting more foods in the past two weeks and, as a result, was losing weight but she was not skeletal, just very thin.  Once she refused a food she didn’t usually go back to eating it.  We think because the meal plan was so low it empowered the ED to refuse nearly all foods, which is what has happen since she was admitted.

While writing this we’ve just heard they have sectioned her and will be inserting tube tonight.  My d is obviously stressed at the thought of them restraining her to do this.                    

I will have to write more later or tomorrow as I can’t think straight at the minute, it’s been a stressful day and now this. 

Thank you all for your support. My d had been following this and appreciates everyone’s advice. X 

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Enn
Ok I think this is the best possible outcome given the circumstances. She has to be fed. Period.
I know  it is frightening to say the least. It is necessary to get the food/calories/nutrients in ASAP. 
Sending a group hug to you and your d. Stay strong for your d too. 
Yes please take a break. This has been a very taxing week. I think this will now get things going in the right direction.

please be aware that once they start getting fed there can be many issues. She may become more despondent, angry, aggressive, quiet. This is expected.
We all understand how this feels. Please vent away here. We want to support you anyway we can.
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
I meant to say also, please take a break. A real break and try to relax a bit. Take care of yourself. Do something indulgent, even if it is something small. We need to take care of ourselves too.
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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kazi67
Sounds like a very tiring, stressful day
as hard as IP is, and traumatising for all NG feeding is, your gd is now going to start getting the nourishment her brain and body needs
try to remember whilst in IP she is safe and the healing process can begin 

our mantra was to “trust the process” even if deep down I didn’t really know if I did,  but we had no choice 
you are fortunate you have got treatment for your gd early and she is at an age where hopefully she responds well
as horrible as it all seems, have HOPE of recovery!!
try to get some rest now, I am ill myself atm and know now I need to take care of me too

we all know how scarey and horrible this is for your family and I know how you all will be feeling 
I couldn’t post at all whilst my d was IP, I cried more tears than I care to remember, I didn’t think my d would ever get better tbh

but I did read others posts and it did give me hope 
my d is doing well atm and she had been deathly ill
so have hope!
x
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Torie
I agree with ScaredMom that the decision to section her is actually excellent news.  I was so relieved to read that.  What a day, though!  

Please know that the more effective the treatment is, the more insistently the sufferer begs to be removed from the facility ... you and your d will most likely hear hair-raising/heart-breaking tales from your gd ... in this upside-down ED world, it is actually a good sign when they complain bitterly about their treatment (heartbreaking though it be to hear the tales).  So if she starts saying the nurses are mean / ignoring her / mistreating her ... by all means follow up on that, but at the same time know that these complaints are really common when the facility is doing a good job.  (It's when they don't mind the facility that we really worry.)

As the others have said, please remember to take care of yourself.  It's true what the airlines say, you need to put your own oxygen mask on first in order to be able to help anyone else.

Hugs xx

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

Just to let you know that they didn’t go ahead with the NG as, when faced with the prospect, gd ate a proper snack and after a little break drank the meal replacement.  Good news yes?  We know that this will start all over again today with breakfast and all meals which I’m sure she will find harder. I hope that now they’ve started this process they don’t let up on it. 


You are right Torie,  gd was happy there and said she wasn’t homesick and didn’t want to move nearer home which was very hard to hear.  We know it’s because she felt safe as she thought she didn’t have to eat.  I’m sure she’s going to have some terrible battles in her head now. My d and my h are going again today while I’m at work. 

will update later. X

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Torie
Jeanette wrote:
Good news yes? 
Yes indeed we are always happier when they are able to eat and drink without requiring the NG, but really, it's all good as long as the nutrients go in one way or another. So yay yay yay!!!
Team Jeanette: 1
ED: 0
I hope work treats you kindly tomorrow (today?) xx
-Torie
"We are angels of hope, of healing, and of light. Darkness flees from us." -YP 
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