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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DJohns
my d is 15 and was diagnosed with bulimia in may 2019 which had a really strong hold on her.  She is having FBT and attends Ed clinic.  We have had some terrible times trying to get D to eat which has led her to self harm and suicidal thoughts.  At the moment although d is eating 3 times a day she is still binging and purging and restricting.  Weight is in normal range but only just.  I am worried about pushing and challenging the Ed as I dread the rages that come when I do this and the self harm which occurs after.  I feel a bit stuck 
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kazi67
Hi Djohns 
and welcome to the forum 
i hope you can get support and information here please make sure you look around 
my d restricted and SH but as far as I know the purging didn’t happen (she did have exersize compulsion so a form of purging)
i did sleep with her in the beginning as we were worried about the SH and also exersizing in the night 
is it possible for you to supervise for at least an hour after each meal and snack?  I did this too as I was worried she may have been purging 
my d then became very ill and was admitted to IP at this stage she was medically unstable and the NG tube was necessary 
my d would SH before her meals were due or if she was stressed or upset in anyway 
she had to have anti anxiety meds before each meal and this did help a lot (but possibly you d too young atm?) you could ask your team

is she at home with you? If so possibly starting to sleep in the same room could help
also after meals anything to distract her, tv, board games, relaxing music, deep breathing ,massage, maybe a SLOW walk, playing with any pets you may have and no visiting the loo for at least an hour after meals 
hopefully someone with more experience with B/P will come along with some more ideas 
x
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Foodsupport_AUS
Welcome to the forum. Sorry that you have had to find your way here. Parenting a child with an ED is tough. When self harm and suicidality is thrown into the mix it makes it all the tougher. At the same time the only way out of this is through. 

I used to hate hearing that when my own D was very ill, but it was true.  We were not dealing with bingeing and purging but were dealing with severe depression, self harm and suicidality. Her mood is only going to be worsened by inadequate food intake, which is likely if there are cycles of eating. Pushing her to eat may lead to threats, anger or rages, however it is still important to make sure those meals get in every time. It is also important for us as parents to be braver than ED and push past that fear of her rage, anger and distress. For my D it was to make sure that every meal got in, that no matter what we made that weight go up, and slowly but surely as she became better nourished her brain became a lot better. 

Most people with bulimia are weight suppressed, that is although their weight may be in a normal range it is below where it has been in the past. There has been a lot of research suggesting that weight suppression is a driving force behind bingeing and purging behaviours. To stop this requires stopping the restriction and regaining most of the weight that has been lost. Her health also relies on stopping the purging. 

How would you like us to help you problem solve the way through? 

If you haven't already I would suggest reading When your teen has an eating disorder which has a lot of information about dealing with these really tough situations.
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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EASL
Dear Djohns:

Glad that you found this space - it helped me so much on the dark days. My D started by skipping meals then turned to binge/purging - when we shut that down she went into full restriction and when forced to do anything it resulted in a rage and also in self-harm. So I know how you feel. If I can - here's some things that helped me:

1. What you will read on here is true - feeding is the cure, and its lots and lots of feeding to get her brain to heal. 

2. See her 'rage' as not her - but the ED fighting you back, as was said to me, if you see ED then you're doing something right. So that means each rage you see is something you NEED to see because it means you're fighting the disease. That said - it is impossible to deal with rage all the time and there will be moments where you will not have the strength or other people/children needs come first - THAT IS OK. Your goal is to get her healthy and that means constant and considerable nutrition but you can only get her healthy if you too are healthy and strong. Of course you won't choose to miss a meal or let her not eat everything on her plate - but sometimes that choice is for the greater good of your health and its OK. Just get right back on the programme at the next meal.

3. Self-harm is very disturbing - does she do this in front of you or in secret? I ask because if its in front of you its actually her trying to punish you and get you to stop pushing her. So ignore it, restrain her if need be and if need be take her to A&E.

4. If a moment arises after a self-harm incident where she is calm explain to her your guiding principal as a parent is to keep her safe - from the others and herself if need be. Ask her what she thinks would be best when she's in the rage (doesn't mean you have to do this - but she might give you a glimmer of an idea). For our daughter we agreed that when she raged we needed to keep the door open and we would interfere if the harming became too violent but we let her throw things in her room, stomp around, scream etc. When ED saw that we weren't afraid of the rage - it slowly went away (of course this was also due to her eating more and more consistently).

5. Speak to your team about the self-harm - they may proscribe an anti-anxiety drug to help.

6. Buy your daughter some creams/oils to administer to herself so the scarring is minimal.

7. On purging - doors open when she uses the loo and she showers. Full stop - no negotiating. Sit outside her room for at least an hour post meals. Make her wake up earlier so there is more time for breakfast and no opportunity to not finish so as not to be late. Join her for lunch at school - if not every day - every other day. Bingeing is addictive and you need to think about it like a drug - just make it really hard for her to do it - remove all plastic containers from your kitchen, her room, bags anything - and lock them away. It will take several weeks to make a dent in the bingeing - and you may need to call in reinforcements so the intense monitoring can be put in place.

We used to have a rage every Sunday, but as we discussed how to handle her outbursts - again us leaving and not talking but being near, this allowed her to calm down. More food all the time will help too.

Be brave, you can do this, it will take a very long time but you can help her back. Keep a journal for yourself so you can see progress - so one day no harm or one day one meal without anger, etc - its important to track because you'll lose site of little wins.

I am sending a big hug to you and please keep posting as it will help to have us in your corner.
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DJohns
Thank you all so much for the great advice.  I’ve had a terrible day.  D has lost more weight and I’ve just found out she took 10 paracetamol last week and then called child line.  She won’t allow me to sleep in her room at the moment which is difficult.  That is where she vomits and SH so I may have to force the issue. My D is on anti depressants and has been given a mild sedative to take when required.   I think she has had a relapse and I’m scared of going back to the bad times but I’m going to have to find the courage to stand up to the ED.   THANKS AGAIN for the support x
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sk8r31
Sorry to hear of the increased challenges at present.  Would you be able to remove your d's bedroom door, if she won't let you sleep in her room?  It's important to be able to break the cycle of purging, and you need to make sure she is safe from SH.
It is frightening to think that things are going south, but the good news is that you know what to do, and hopefully you have some good professional support as well.  Sending hugs...
It is good to not only hope to be successful, but to expect it and accept it--Maya Angelou
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EASL
I am so sorry to hear you’ve had a difficult time. First - stay strong, you are doing your best and you need to know that. Second, I can’t remember if you have a partner who is helping you. If not, I think you need to reach out and get some help. Someone who can stay the night and as suggested, remove the door to your D’s room. 

Perhaps it it would be a good idea to ‘proof’ your house? Hide/lock away: all sharp objects including pencil sharpeners, hair clips, toenail cutters, scarves, belts, bathrobe ties, bags, containers, rubbish cans. Anything she can use to hurt herself or throw up into - think very creatively. 

The very first step is tolerance - she has to live through the awful thoughts without harming herself or getting sick. If you make that as easy as possible by removing the accessories then you’ll have done step 1. Once she does it one time then she knows she can do it again - and although unpleasant it gets easier after time (a long time). 

Keep safe yourself - by resting and getting help for you. Check back in soon. Know I’m thinking if you and sending you strength. 
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melstevUK
Hi Djohns,

So sorry to hear what you are going through with your d.  I don't know where you are based in the UK but given that your d is really in the grip of the illness, and that there is also SH involved - I would not hesitate to ask for an IP stay for her.  Specialist units will take bulimic patients even if weight is not dangerously low, because it is recognised just how difficult it is to treat patients at home.  

She should really be on a three meal three snack structure, should be supervised after every meal and snack for up to an hour - and that is a very big ask.  FBT is now being offered for bulimia as well as an - but if she is only being advised to have three meals and no snacks, then I doubt that the team have detailed training and are just expecting you to refeed her at home.

would have no qualms about asking about an IP stay - your d is really ill and the purging can play havoc with potassium levels which in turn affects the heart.
Are her bloods being monitored at least?

If she is not on any medication - fluoxetine can be prescribed for bulimic patients and is one of the recommended treatments, so it would be worth discussing this with your d's team.

What is clear is that you need a lot more help and support than you are getting right now so please see speak to your team about what is available.

And come back any time to ask more questions.
Believe you can and you're halfway there.
Theodore Roosevelt.
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DJohns
Hello.  By IP stay do you mean  my D should go into  a specialist residential unit??  We live in Gloucestershire thanks x
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tina72
This might be needed. To stop vomitting is very difficult and without 24/7 supervision nearly impossible.
If she does not allow you to sleep with her in her room and she does the vomitting there think about other options to make this impossible.
a) take off the room door
b) she is also not allowed to sleep in her room and must sleep with you
c) have an alarm that reacts when she gets up in the nights
You really need to stop that. Purging type ED is very serious and can make great damage to her body in a very short time. If you cannot stop it at home she needs a higher level of care asap.
Keep feeding. There is light at the end of the tunnel.
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melstevUK
Hi Djohns,

Yes I did mean that you should ask for her to have a place for a few months in a specialist eating disorders unit (IP = inpatient).  These are tough, tough illnesses to beat and if you can get intensive support for a short while to get her more accepting of a healthier regime and for help stopping the vomiting, it would be a good start.  Hoping that your services will consider it.
Believe you can and you're halfway there.
Theodore Roosevelt.
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DJohns
Hello.  
It was a no from our clinician regarding hospitalisation.  I’ve had a total meltdown tonight which I know is not good for my d.  Will try and get it together tomorrow.  It’s so tough   
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DJohns
Please advise how I can proceed as I’m really desperate.  Thank you
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deenl
So sorry to hear that. You are right it's very, very tough. Did the clinician offer any other form of support?

Please be good to yourself tonight and try to regroup.

Wishing you strength and courage.

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.
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EASL
Djohns

im so sorry to hear your team said no to hospitalisation. In my experience you may have to do two things in the short-term to set your daughter on the path - not get her well just get her pointed in the right direction:

1. You need more help - a friend/family member/neighbour - essentially there need to be 2 adults around at all times to physically stop her from purging. 

2. You need to be very firm - while still kind and empathetic - that the behaviour has to stop. Then explain how you will not tolerate it and explain the changes to your lives until the behaviour stops, e.g. no school, no privacy, etc. Obviously the more positively you can do this the better but sometimes the law has to be laid down and followed thru -
again this is really hard to do and you need another adult to help you. 

It it may be worthwhile speaking to your GP about how you are feeling - overwhelmed and unsupported- that may help get you more support from CAMHS or elsewhere. 

I believe in you you and I know how miserable it is at the moment. Make small steps - get help - and know that you don’t deserve this but you can get through it. 
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DJohns
Thank you for you amazing kindness and support.  Xx
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rdeb175
Hi Djohns
I’m so sorry to hear about your d. My d has anorexia which is now presenting as bulimia with binge purges daily. There is a good specialist ED Huntercombe hospital in Worcestershire that offers day care - is that something your doctor would consider referring your d to? 
My experience is that if my d needs to purge nothing will prevent that happening so don’t beat yourself up if you can’t stop it completely. 
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DJohns
Thank you.  I will check this out tomorrow. 
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DJohns
I’m so glad I found this place 
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melstevUK
Hi again Djohns,

Who do you mean by 'clinician'?  If it is a specialist nurse or a psychologist - you have to go over their head and get an appointment with the consultant psychiatrist that your d is under.  He or she ultimately controls the funding and ultimately is responsible for your d's health - not the clinicians in the team.  This is the person you need to approach with regard to hospitalisation.  If you ask for a six week placement - that is an extremely reasonable request given the severity of your d's illness - tell him/her that you need help to get the illness down to a level at which you can manage it at home and that it is absolutely impossible at the moment.

I know you can set up systems for stopping the purging but it is really tough going and you should not have to do that to start off with when things are so bad.
Believe you can and you're halfway there.
Theodore Roosevelt.
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melstevUK
The psychiatrist will have to give reasons for refusing the hospitalisation - one could be that he/she is unable to section your d - and that is likely to be true because her weight is not at a critical level.  If your d refused to go - it would be very difficult to enforce so that could be the main reason for the refusal.  I have never heard of the MHA being used with a bulimic patient - only with severely ill anorexic patients - but it is not uncommon for them to go into hospital if they are willing to accept the help.  You would just have to put pressure on your d to go. 
Otherwise there is no good reason for him/her to argue that it is not necessary - because it is and you would need to stand your ground and also hold him/her responsible if anything untoward (God forbid) happened to your d.
Believe you can and you're halfway there.
Theodore Roosevelt.
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EASL
Do check in often. You need as much support as your D. I will keep you in my thoughts. 
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tina72
DJohns wrote:
Hello.  
It was a no from our clinician regarding hospitalisation.  I’ve had a total meltdown tonight which I know is not good for my d.  Will try and get it together tomorrow.  It’s so tough   


I am not sure if the team is aware of the seriousness of the vomitting. Please ask why they decided against IP and what help you can get to organise a 24/7 supervision at home. The vomitting needs to stop.

Please feel not guilty for that meltdown. That is totally normal and I no nobody here that had none. You are only a human and this disease asks more than human power. Please do something nice for yourself today. Have a bath. See a friend. Call your mum.

It is so tough. Refeeding our d and get rid of ED was the hardest thing we ever did. We both still have some PTSD left. My d for Gods sake does not remember much of the dark days. But it was worth every single sweat, tear and blood. I would do it all again if needed. There is no better victory than to see my d having her life back today. You will get there. Breath through and start into a new day. One day after the other. One meal after the other. This will not be the rest of your life.
Keep feeding. There is light at the end of the tunnel.
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