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AUSSIEedfamily

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Reply with quote  #26 
Dear Nelly,

I completly understand where you are now & how you are feeling. You have been dealing with this for so very long and other than the great IP have been let down by the service providers that should have provided what you need especially given that you live in the country that invented family orientated treatments.

Its hard for me from Aussie land I just wish I was just around the corner to help you out & I wish I was as good as Charlotte in getting support in the UK.

I have e-mailed you my number call me if you want to or text me a number to call you on.


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toothfairy

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Reply with quote  #27 
Hi Nelly,
Are you ok?
I completely get how traumatised you are.
Nelly she still sounds very ill.
I think it is a great idea for Aussie to speak to Janet Treasure.
I am not sure what else to say except, if you wish - you have every right to call an ambulance, or police if you need back up.

Nelly - is there anything at all that you can do now to start the ball rolling now to start the process of having her sectioned after last nights episode?
Nelly, do you have somebody that can stage an intervention.
Did meds ever work?


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Son,DX with AN, (purging type) age 13 in October 2015 ,  (4 months immediate inpatient) , Then FBT at home since.and making progress every day. He is now in good recovery, and Living life to the full like a normal teen. We are not completely out of the woods yet, but we can see the light at the end of the tunnel, thanks to ATDT. Hoping to get him into full recovery and remission one day at a time.
toothfairy

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Reply with quote  #28 
Dear Iwanttohelp,
I have a real problem with your message.
Nelly's Daughter has a long history, and in my view it is not appropriate for you to imply that this is not an emergency.

You may be a psychologist with experience , but having lived myself with a child that purged. It can very easily turn into a medical emergency for a variety of reasons. From self harm to choking, internal bleeding to stomach tearing, not to mention heart failure.
Especially with that amount of food.
TF

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Son,DX with AN, (purging type) age 13 in October 2015 ,  (4 months immediate inpatient) , Then FBT at home since.and making progress every day. He is now in good recovery, and Living life to the full like a normal teen. We are not completely out of the woods yet, but we can see the light at the end of the tunnel, thanks to ATDT. Hoping to get him into full recovery and remission one day at a time.
NELLY_UK

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Reply with quote  #29 
They wont section her. We have tried this so so many times. She has a job and can be rational so although we all know when it comes to food she is off the scale sectionable that isnt enough.
Last time I called the police when she was completely out of control self harming as well as binge purge she spent the night in a cell. The next day she was sent home. There was no intervention then apart from an mha which said she was fine to go home. No follow up, no support, nothing.
An ambulance will only take her if she agrees to go and if it is medically neccessary. Mental health doesnt count as medically neccessary unless she threatens suicide to them directly.
This is why I am going mad with it all.

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NELLY D 18 bulimic since age 12, diagnosed in 2011. 20 months useless CAMHs,7 months great IP, home March 14..... more useless CAMHs.now an adult & no MH services are involved. I reached the end of my tether, tied a knot in it and am hanging on. Bulimia treatmentis in the dark ages in West Sussex.
toothfairy

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Reply with quote  #30 
Hi Nelly,
I dont think that mjkz was blaming you, or saying that you were the blocker to her recovery.
From what we know above , there is no way you can get her help unless she agrees.

On that basis, you have tried everything with her living at home, and allowing her access to your house. She refuses to accept help.

Last night, she had access to your house to binge & purge.
If she was in treatment, and this happened, personally I could accept that as a lapse, but if not I would consider clear rules as to what is acceptable in my home.
It is not sugguesting that she is made homeless, but as of now, can you create a boundary here, & a contract for her when she is in your home.
This is in no way a personal attack, this illness is horrific, and I am deeply sorry that you are still dealing with this horror.

How is she today, did she sleep in your house Nelly?
Thinking of you
TF

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Son,DX with AN, (purging type) age 13 in October 2015 ,  (4 months immediate inpatient) , Then FBT at home since.and making progress every day. He is now in good recovery, and Living life to the full like a normal teen. We are not completely out of the woods yet, but we can see the light at the end of the tunnel, thanks to ATDT. Hoping to get him into full recovery and remission one day at a time.
Kali

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Reply with quote  #31 
Nelly how are things today? 

Kali

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iwanttohelp

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Reply with quote  #32 
Hi toothfairy,

i don`t say that binging and purging isn`t dangerous. I just say in most of the cases its not an immediate emergency. I don`t know how things are in the UK, but over here no single policeman would show up, when i say: "Hey there, my d suffers from bulimia and just ordered pizza worth of 50 $".
Nor would an ambulance.
Really, what should the police do?

In Germany there is so little chance to section someone with a low BMI. NOONE will ever be sectioned bc of a binge.

I don`t want to be rude or offending, but binging on giant amount of food and purging for hours is the true face of bulimia. Imagine every parent would call the police or an ambulance bc of that.
And lets face it: this was probably NOT the first time, Nelly d binged on that amount. This is bulimia.
Thats all what i am saying.

And i also said, that it is incredible hard for parents to watch this.

It is so similar to (other) addictions. Families fall into pieces about drugs and so they do about ED.

What i understand from Nellys post is, that things seem to be similar in the UK: the d is technically an adult and as long as she is no danger to herself or others, no one is going to tell her how she has to lead her life.
She may be very very sick and acute emergencys could appear, yes. As i say: it is dangerous living with bulimia.

All i wanted was to calm things a bit down bc panicking is the worst.

And i really really wish Nelly, that you still manage to look after yourself in all this mess. That you treat yourself and that you do things you enjoy. Please do not let this illness drown you aswell.

Maybe today you can have a talk to your d, telling her, how frightened you all were last night. Is she open to talk about her actual eating behaviors? Does she see the BN as a problem? Bc if not, i think chances are little, she will change anything.

Kali

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Reply with quote  #33 
Hi Iwanttohelp,

You have a unique opportunity here to experience how parents and families are affected by eating disorders and to use that understanding to inform your future therapy, which is what I hope that you will do. You can see first hand how distressing it is for a family when their loved one is ill and is refusing help. 

Kali


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Kali

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Reply with quote  #34 
Quote:
Last time I called the police when she was completely out of control self-harming as well as binge-purge she spent the night in a cell. 


How is it even possible that they could do this to someone experiencing a mental health crisis? It is heartbreaking.

Nelly, I know that your daughter has not had the help she needs. Is there any way to research new options and find treatment she can engage with and family therapy to help all of you? Is there any way to firm up the boundaries at home?
Can you use this recent event as a catalyst to insist that she get help?

best wishes,

Kali

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iwanttohelp

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Reply with quote  #35 
@Kali i do. I do and i find it terrible to read about it. The lack of knowledge within the "pros" (ka medical or therapeutical teams). The lack of help or support or just places for treatment. The gaps of paying from insurences. And so much more.

I have deep respect for every parent here who trys his and her best to save the child.

This illness is so cruel. It does so much harm, to the families, the sufferers, everyone engaged.
melstevUK

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Reply with quote  #36 
Nelly,

How are things today?  
This is a horrendous situation that has been going on for years and I completely understand your exhaustion.

Can you get your d to sit down with you and discuss what she can do to move things on?  I understand that you don't want to throw her out and understandably feel totally defeated and don't know who to turn to, but I don't think it is acceptable that your d locks herself in a room for a binge/purge session.

You can't change what happened last night but you can have a discussion that this is intolerable for you to witness any more and that it has to stop.  You also need to discuss why the binges have increased in size.  What has changed in her life to make her do this?  I suspect that she is trying to restrict and may have moved away from eating regular meals and snacks - but this is the only way to move towards a recovery.  She has to ensure regular nutrition goes to her brain and she also has to face whatever worries and obsessions she may have about her weight.  Would she see a dietitian at least?  She does not have to see an eating disorder dietitian, her GP could probably refer her to a community dietitian.  She needs support of some kind but she is now old enough to try and take a more mature stand and approach to how she is going to get over this.  It should not be purely for you to put the obstacles in the way of her behaviours - at this age and stage she needs to be more cooperative with you.  She is no longer a young teenager starting out on with this illness.

I hope you can get a decent conversation with her at least.


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Torie

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Reply with quote  #37 
Nelly,

I just saw this now.

I'm so sorry.  I don't know what to say.

You are a good mum.  xx

-Torie

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mjkz

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Reply with quote  #38 
Quote:
I don`t want to be rude or offending, but binging on giant amount of food and purging for hours is the true face of bulimia.And lets face it: this was probably NOT the first time, Nelly d binged on that amount. This is bulimia.Thats all what i am saying.


This is exactly what I was saying. 

Quote:
I dont think that mjkz was blaming you, or saying that you were the blocker to her recovery.
From what we know above , there is no way you can get her help unless she agrees.

On that basis, you have tried everything with her living at home, and allowing her access to your house. She refuses to accept help.


Thanks TF.  Nelly, you can't get her help without her agreeing to it.  She is living with a friend most nights you said and reality is there is not much you can do.  You have tried just about everything to keep her from purging at home and it has not been successful.  As you have said, she purges out in the neighborhood if not at home.  What I am saying is all you can do at this point is protect yourself and the safety of your home.  If she is coming home to purge, then don't let her come home.  I think since she is living with a friend your comment on making her homeless is a bit over the top.  I'm saying don't let her stay at home to purge.  If she is there to sleep, etc. then fine but you are in control of who stays in your home and who does not.

You do have power in this situation.  You can either accept that the way things have been will be the way they stay or start protecting your home by not allowing this to happen.  You can't realistically stop the binges but you can say not here in my house.  She has other places to go so she would not be homeless.

As for why it is you, it sounds like your hubby made his mind a long time ago that she had to leave at age 18.  Somehow or another she is still there at age 19.  If he wants her gone, why is she still there?  I don't know if she is still there because you want her there or not but that may be why your family is leaving it to you.  They made up their mind a long time ago.
LauraCollins_US

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Reply with quote  #39 
Nelly,

It all sounds completely frightening and chaotic and exhausting. For all of you, including your dear daughter. You sound like a person under siege, and without allies. Those are terribly difficult times to make decisions, or even to see the options clearly.

Some moments in life, especially when dealing with a situation that descends like that and exploits and uses all your best efforts, are only to be endured. And then used to make a plan for the next time. And, as you and everyone above so well describes it, sometimes all we have is what WE INDIVIDUALLY can do and stop doing. We can't make our loved ones not feel or feel compelled to do as they do. We can't make the social services around us more or better than they are. We can't force the other people involved to see it as we do or put the same priorities or boundaries as we do.

All we have is the wisdom of observing, noting the patterns, and figuring out where we fit into those patterns. Then we make choices based on what we alone have control of. And, often, we don't have control of much!

But the saying "when in control, be in control" is important. And also the corollary: "when not in control, don't continue to treat it as if you are."

Anger at the system, at the symptoms, at the people around us, all that just wears you down further. Despair is tempting, but also drains you. But figuring out what pieces of the situation are under your control and making decisions around that and that alone is both courageous and loving.

Sending a hug, and sympathy, and Big Girl Pants, and believing that today will be better.

Laura

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NELLY_UK

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Reply with quote  #40 
Things are quiet as she is back at work on a training day. I did another module of my course, housework, reading. I rang the GP but of course they need d to go there and ask for help.
This is the second time it has happened like this. The firat time we were unaware until way afterwards. She used to come home eat and chill in her room. She didn't even purge every day. Since she spikt with bf she has definitely purged when we see her. Possibly in between as well.
The staying at her friends is a new thing as well, since the dumping of the bf.
I think she starves herelf when out as she cant purge in unfamiliar surroundings.
Trouble with this is that i dont always know when she is going to purge. Especially now things have changed a bit. We used to drive to avoid a binge or a purge, not sure whats happened to that.
If she comes home I will say, you are not coming home to act out the bulimia behaviours in full.
With regards to kicking her out, making her homeless, she earns a training wage and couldnt afford anywhere. There is no housing help available to her. She would be homeless unless she could sofa hop which is kind of what she is doing but not full time. We would have to pay for her to live away and we cant.

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NELLY D 18 bulimic since age 12, diagnosed in 2011. 20 months useless CAMHs,7 months great IP, home March 14..... more useless CAMHs.now an adult & no MH services are involved. I reached the end of my tether, tied a knot in it and am hanging on. Bulimia treatmentis in the dark ages in West Sussex.
NellyMac_UK

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Reply with quote  #41 
Nelly I have been where you are. We were also let down by the MH services in our area, our D was too ill to engage and we felt she was abandoned. The feeling of panic and despair can be overwhelming. Laura gives good advice.

I hope today is a little better.
I hope you have been able to get a break or some time out.

xxxxxx

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mjkz

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Reply with quote  #42 
Quote:
If she comes home I will say, you are not coming home to act out the bulimia behaviours in full.
With regards to kicking her out, making her homeless, she earns a training wage and couldnt afford anywhere. There is no housing help available to her. She would be homeless unless she could sofa hop which is kind of what she is doing but not full time. We would have to pay for her to live away and we cant.


Sounds good Nelly. Make sure you stick to that too.  It does no good to make a stand if you can't stick to it.  As for what happens to her if you don't let her stay at home to purge, that is totally on her, not you.  You are providing a safe place for her to live but she has to follow your rules.  If she has to sofa hop to get that through her head, then so be it.  Don't let that stop you from making your home safe for everyone.  Where to go to throw up is her problem and something she will have to face.
LauraCollins_US

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Reply with quote  #43 
We have promised our kids that our home is always theirs, but only if well or pursuing wellness. We won't be harbor to destructive behaviors to anyone, including themselves. That means our home is a safe place and that we'll be part of any healthful actions. We may not be able to control what goes on outside our home, but our home will be a welcoming and safe place for wellness. Our kids have a choice, but we do not have to agree to be an enemy to their best interests.
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AUSSIEedfamily

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Reply with quote  #44 
Dear Nelly,

I am so frustrated that I live half a world away from you and that is especially the case now I am in the last part of my Certificate IV in Mental Health. I would dearly wish to be able to drop by and support you & your family.

I really find it tough to comprehend that you live in the country which started the family based treatments and your local CAHMS team totally stuffed it all up at the beginning & have stuffed it up since your D came out of IP and just fiddle at the edges until she turned 18. I can hear Charlotte screaming from heaven at them and the others who have provided a very sub-standard level of care.

You joined this forum around the same time as me and I remember the official report you got afer you made the official complaint. It migt be benefcial for ATDT members to review your old posts they might then see a different perspective.

I am going to make a strong effort with the event we have in WA to try and get the key note speaker to try and get you some better help. I will back e-mail you.

Just thought of this and thought I would add it to this post. If our ed offspring were diagnosed with an aquired brain injury after an accident or illness that caused physical damage to the brain that caused brain impairment that impacted on their mental capacity then then would receive a heap of assistance and treatment and would be given it regardless of their capacity to engage with clinicians and with family and regardless of their behaviours because everyone would accept they needed help because of their brain injury and not be expecting them to live & behave to societies norms untill the brain healing had been acheived. My viewpoint is that your D has a type of aquired brain injury and needs to have a heap of assistance to get her brain to heal. I will try and advocate for you & your family in places where I can meet those from the UK

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AUSSIEedfamily

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Reply with quote  #45 
Dear Nelly,

I hear/feel and share your desperation. You have been on the receiving end of really bad treatment from your local clinicians & treatment providers despite all of your huge efforts to get help you have been ignored & let down by your providers even the official report acknowledges that although they then had a get out of goal free comment. You pleaded with your team to readmit your D when she started to slide after the inpatient and they refused to re-admitt her. In my viewpoint they failed their duty of care towards your D and your family by not readmitting your D and that makes me wild & mad beyond belief. If they had re-admitted her then I believe your D would be recovered now.

From my perspective & viewpoint since we first joined this forum you have tried every option available to you and more and your local teams have not provided the support, guidance and assitance you need. You have been on the receiving end of bad treatment which as we say on this forum is far worse than no treatment at all.

For anyone reading all of your posts from the very begining they would then very much understand your cries for help and offer you compasion, empathy, understanding & kindness. I just wish I was within a short distance from you!! Lots of virtual hugs, coffee & stronger stuff from me!!

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NELLY_UK

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Reply with quote  #46 
Thank you EDDad, yes the treatment teams have colluded with the illness and between the two my family and myself especially are truly deeply damaged and broken.
I dont know how to recover myself and as for our family really the best solution is to not be with each other.

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NELLY D 18 bulimic since age 12, diagnosed in 2011. 20 months useless CAMHs,7 months great IP, home March 14..... more useless CAMHs.now an adult & no MH services are involved. I reached the end of my tether, tied a knot in it and am hanging on. Bulimia treatmentis in the dark ages in West Sussex.
AUSSIEedfamily

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Reply with quote  #47 
Dear NELLY,

You are more than welcome. If you have time during June I can make time to meet with you on my way through London to Prague or on the way home. Can even get to your town may be!


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toothfairy

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Reply with quote  #48 
Hi Nelly,
I hope things are calm & you are feeling ok.
Nelly, I am unsure what part of the UK that you live in, but would it be worth looking into this (for your area) for your family,with the goal of getting her into treatment?
Or getting her to work with a contract.

http://www.dorsethealthcare.nhs.uk/WS-Dorset-HealthCare/Downloads/Managing%20Your%20Health/Therapy%20Information%20Leaflets/L130-09FamilyIntervention.pdf



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Son,DX with AN, (purging type) age 13 in October 2015 ,  (4 months immediate inpatient) , Then FBT at home since.and making progress every day. He is now in good recovery, and Living life to the full like a normal teen. We are not completely out of the woods yet, but we can see the light at the end of the tunnel, thanks to ATDT. Hoping to get him into full recovery and remission one day at a time.
NELLY_UK

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Reply with quote  #49 
That looks really good over in Dorset. I have looked but there is nothing remotely similar here. The post code lottery strikes again. I shall be voting for the party who have said they will renationalise the NHS, then the lottery will end.
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NELLY D 18 bulimic since age 12, diagnosed in 2011. 20 months useless CAMHs,7 months great IP, home March 14..... more useless CAMHs.now an adult & no MH services are involved. I reached the end of my tether, tied a knot in it and am hanging on. Bulimia treatmentis in the dark ages in West Sussex.
iHateED

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Reply with quote  #50 
Oh Nelly, I am so sorry for all that you have been through and all that you continue to go through because of lack of good medical help on your end.   Sending hugs your way [smile]
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