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catbells

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Reply with quote  #1 
My d remains stuck in a cycle of NG and oral feeding. She needs to be completing 5 of her Fortisip feeds orally. She may manage 2 and some days does not manage any. She has been at the Unit since Sept last year and is now 98% WFH.
Most of her feeds are done via NG as a result and she has been on the tube since her admission into a paed ward hospital last August.
She continues to self harm by clawing & scratching at her arms but at the least the headbanging is now minimal.
She says she cannot cope with the guilt she feels afterwards and the oral feeds make it worse.
We have been trying to support with extra visits and lots of supportive phone calls. Not working.

We had her CPA yesterday and the NHS commissioner is seeing us tomorrow to discuss her lack of progress and the very likely possibility of a move to another unit.
Her team are suggesting another ED Unit rather than a general adolescent unit as they would be concerned that her SH would escalate in that type of environment.
When asked what a move would achieve, i.e would the treatment be different/more intense, they said no. It may be the case that she has gotten too comfortable on this unit and a change may motivate her.
They asked us do we have any preferences or have heard about any other units that we would like them to consider.
I genuinely don't know. So my questions to my fellow warriors are:
- anyone else been in this situation before and what should I expect tomorrow
- what questions should we ask
- we are based in the North West ( as is my d's current unit) so a move would mean fewer visits. We do have friends in the South East so that would be an option. Any recommendations?
- has a move farther away from home and therefore fewer visits plus the option to be with her at an hour's notice been a motivator to change?

Anything else?




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Mum to 17y/o D living in England. RAN since Sept 2015. Refed at home but after getting within 3kg of WR D relapsed July 2016. hospital twice for 2 and then 5 weeks. Now IP since Sept 2016. Please God we're getting there.
Optimistic

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Reply with quote  #2 
Hi, I do not have direct experience with this, but I do recall reading on the forum that a unit used "visits with mom" as a motivator to change. Sounds harsh but from what I can see, there does not seem like there is any easy way out of this illness.

Good Luck. One of my dear friends, a mental health professional & a someone who went through AN when she was young, advised me early in this journey: you are going to have to trust someone. Choose someone & trust them. It's helped me through some of this long hard journey.  Wishing you all the best.
mjkz

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Reply with quote  #3 
Catbells, what do you have to lose at this point by taking the same approach with eating as the headbanging?  I know you feel it is punishment but taking the same approach you have been all along with eating has not worked.  The new approach you took to head banging did.  What about something like I suggested on your other thread with making your visits and calls dependent on her eating or drinking her supplements?  It has to be better than having her moved to a place where it will happen automatically since the distance will prohibit you visiting more often.

Basing my visits on my daughter's behavior is what actually got her unstuck when she was in a very similar situation.  Obviously the call is yours to make but I don't see a down side at this point.  My daughter hated the idea but when it came down to seeing her mom VS not seeing her mom, she drank the supplements and ate.  She thanked me later saying she was so stuck that she couldn't see a way out.  It gave her the motivation she needed to start moving forward again.

It felt like a betrayal and it was one of the hardest things to do but I don't regret doing it now.
melstevUK

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Reply with quote  #4 
If she is going to be moved again I would give serious consideration to getting her into one of the Huntercombe Hospitals.  I think the nearest one to you would be in Stafford.  I would not worry about the distance - it's how effective the care is which counts.

The fact that the managers of where your d is now are actually - you might not realise it - blaming your d and her unwillingness to recover suggests to me they are not up to the job of getting her well.  Otherwise they would be seeking ways to move things forward and making it happen.

However, I think you need to pull back with the visits because in effect her behaviours which are hindering her recovery are actually working - she is seeing more of you and you can do nothing for her.  She has this journey to make herself.   

It is incredibly hard and quite harrowing to see our children suffer - but suffer they must.  

'she says she cannot cope with the guilt she feels afterwards and the oral feeds make it worse.'

This is pure ed speak and you have to tell her - 'Well other patients manage it and so can you.  Next time we visit we want to hear that you are now managing to do what is expected of you'
and leave it at that.  The illness can see that it has you in its thrall at the moment - and you have to stand outside it.

I know it sounds harsh but this is what we all have to do ultimately.  I remember one weekend my d was desperate to come home and pleading with me, full on tears.  Her psychiatrist and psychotherapist asked me not to take her because she wasn't well enough.  The therapist explained the concept of 'putting a ring round the illness' - so that it cannot 'break out'.  She needed to stay in the unit and be made to eat because she would not be able to do it at home - in which case I was going to be the weak link in the circle and let the illness have the upper hand.

We have all seen our share of clinicians who are the 'weak links' when others are doing well - who do not push as hard as is needed, who try and be 'nice' to the patient.  It doesn't work.  All the adults involved in their care have to stand firm and on the same page:  'You will recover however hard it is and you will eat and you will stop these behaviours'.  

So you could leave her where she is and take a tougher approach - or move her if you don't feel she is making the progress you expect.  

I don't mean to sound harsh - but in eating disorder treatment only the approaches and behaviours and interventions which work lead to success.







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Believe you can and you're halfway there.
Theodore Roosevelt.
Torie

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Reply with quote  #5 
Quote:
Originally Posted by catbells
We had her CPA yesterday and the NHS commissioner is seeing us tomorrow to discuss her lack of progress and the very likely possibility of a move to another unit a motivator to change?


Huh.  I would think they would want to discuss her progress, because it does seem that there is a good bit of that to talk about.

Progress minimizing the headbanging.
Weight is up a bit?
Taking some of her feeds orally
My impression (maybe wrong) is that she is just generally less out of control than previously.

Of course, from my distance it's hard for me to understand the situation too well,  (From your vantage point, it might be hard to see the bigger picture, though.)  

Maybe it would be worthwhile for you to re-read some of your posts to see if you agree that a lack of progress is what you should be talking about.

Personally, i think you guys might be on the right track.

Thinking of you. xx

-Torie

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

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Reply with quote  #6 
Rogers Memorial Hospital.  800-767-4411 Dr. Ted Weltzin....will help!  He is by far the most compassionate, experienced leader in treating this.  Please give them a try.  

catbells

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Reply with quote  #7 
Thanks folks.
TF - it was the threat to leave the unit and terminate our visits with d that has stopped the headbanging. So melstev, Mjkz and Optmistic are onto something when they say to use this as way to get her to take her feeds orally. H did suggest it but her team felt she would see it as punishing her rather than the ED. Guess I need to toughen up and try this approach. I will explain what we are going to do and why tomorrow to her.
Torie - I agree with you on the progress. She has made progress but they are saying it's too inconsistent. I have heard though that the NHS Commissioners are coming down hard because of funding issues so they see 5 months and still NG as not acceptable.

Regarding Huntercombe Stafford, that would be the nearest but it was deemed as inadequate by the CQC last year so I would fight against that if it gets that far. However given she is on a Section and we don't pay for her treatment I'm not sure what the options would be. Distance is not an issue. I just want her well. Sigh.
Miracle believer I'm assuming you're in the States?

Xx

__________________
Mum to 17y/o D living in England. RAN since Sept 2015. Refed at home but after getting within 3kg of WR D relapsed July 2016. hospital twice for 2 and then 5 weeks. Now IP since Sept 2016. Please God we're getting there.
mjkz

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Reply with quote  #8 
Quote:
H did suggest it but her team felt she would see it as punishing her rather than the ED. Guess I need to toughen up and try this approach. I will explain what we are going to do and why tomorrow to her.


The team's logic makes no sense.  What do they think they are doing by sending her farther away from you?  If they don't want that approach, then they need to find another way to make this work, not send her farther away.  What would another unit offer that the unit she is on cannot?  I would certainly encourage you to try since the only other option is uprooting her and sending some place that you may not be able to visit very often and my guess would be she would go backward with behaviors based on being in a new unit with all new staff, etc.
Morgana

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Reply with quote  #9 
If she feels so guilty after oral feeds can't they increase ng feeds? My d was ng fed for 8 months, and for the first 6 weeks or so the unit was okay about the feeds, then tried to motivate her to come off them. I felt it was too soon, and for a few months I was constantly battling with them to drop the idea of her coming off the tube until she was a a higher weight and ready. Eventually they realised my d would progress better without being pushed all the time, so the last few months they all just accepted the tube and she came off it in her own time.
What the tube did for her was allow her to gain weight without feeling responsible or guilty for it. There were times when she would refuse feeds but eventually she would start allowing them again and slowly she started gaining weight and healing her brain.
The unit is in north wales if that helps.

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15yr old d. June 2014 stomach pain. Medical investigations until Feb 2015, referred to CAMHs dx food anxiety. Kept restricting and losing weight until July 2015, medically unstable. Began intensive re-feeding at home. Re-evaluated by psychiatrist, dx Autism Spectrum Disorder and Atypical AN.
Found out it's actually Typical AN.
IP from Oct 15, ng tube Nov. Re-started eating food July 2016. Discharged from IP August 2016 97% weight for height.
mjkz

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Reply with quote  #10 

Catbells, how did your daughter take the new way things are going to be?  Were you able to talk to her about how your visiting now will depend on her moving forward in taking the supplements?

Quote:
she says she cannot cope with the guilt she feels afterwards


Maybe they need to focus on teaching her that feeling guilt is fine but refusing to take the food or supplements is not.  Feelings are just feelings and you can get through them.  They will not kill you although it may feel like that in the short term.  Coping skills for feeling guilt seems like a good avenue to pursue.

Torie

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Reply with quote  #11 
Quote:
Originally Posted by catbells
She has made progress but they are saying it's too inconsistent.  


Well, duh.  Do they expect progress to be linear???

Glad to read your comment about toughening up and using all the leverage you have. 

Sending hugs and a brand new set of big girl pants. xx

-Torie

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

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Reply with quote  #12 
The illness can see that it has you in its thrall at the moment - and you have to stand outside it.

Thank you Melstev for this line. I think I'll have it tattooed on my hand.
Izzo

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Reply with quote  #13 
Catbells I haven't been allowed to visit my D this weekend in an attempt to stop her destructive behaviours and get her on a more even keel with her eating. After reading your post Catbells and the advice from MJKZ I think this might be the best option to get some behavioral improvements because visits have been awful for the past week. In fact I suggested it to the team and they wholeheartedly agreed with it (unlike the last unit) - so I think you have made great progress so far. 

Nevertheless it feels bad because I miss my D and hate the suffering that she is enduring but I have to be cruel to be kind. 
catbells

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Reply with quote  #14 
Sorry for the delay in posting but the update is that we met with the NHS England commissioner for the area a few days ago.
She was very no nonsense (with a few unnecessary comments thrown in in my opinion) and has outlined that she wants d completely off NG feeding in 4 weeks. The funding team are coming down really heavily now on the unit and if the funding team deem progress is not quick enough then a transfer to another unit will happen. She referred to my d's unit (while my d was there) as being excellent, top class etc etc but "fluffy". She used this expression a few times and I asked her what she meant by this. "Well...the team here offer sympathetic, arm round the shoulder and really care about their patients!" Well actually they do care and are tough too! that is the environment I want for my d. Her progress has not been linear but she is making progress.
The headbanging has now stopped.
The threat of transfer has motivated her sufficiently to take 4 of her Fortisip orally and she had 4 hours out yesterday. The longest time of the ward since NEw Year. It was so lovely.
Praying that the progress continues

I did use the line from mjkz about feelings being just that and they will pass. It worked! So thanks Mjkz!

Xx

__________________
Mum to 17y/o D living in England. RAN since Sept 2015. Refed at home but after getting within 3kg of WR D relapsed July 2016. hospital twice for 2 and then 5 weeks. Now IP since Sept 2016. Please God we're getting there.
K63

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Reply with quote  #15 
Hi Catbells, it's great to hear that your d is doing a bit better even if it's the fear of being moved. If she can continue this and increase her nutrition it will help her state of mind. Also great that she was rewarded and had a few hours out . It's all baby steps but going in the right direction .
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Daughter started restricting in February 2014, tried re feeding at home hospital admission 4 1/2 months weight restored started restricting post discharge, back on meal plan full supervision weight restored april 2016. Starting to hand back responsibility for meals it's scary. 
mjkz

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Reply with quote  #16 
Wow Catbells!!!  That is so awesome.  I would want my daughter there too so glad she is using it as motivation to get off the Ng.

Quote:
I did use the line from mjkz about feelings being just that and they will pass. It worked! So thanks Mjkz!


So glad it helped. My daughter has PTSD and that has become our mantra during flashbacks and nightmares.
toothfairy

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Reply with quote  #17 
Catbells
How was today, did she cope with the fruit?

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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.
catbells

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Reply with quote  #18 
Hi TF - probably time for an update.
She has been off NG now for 4 weeks and has been rewarded with 2 overnights at home. She also now gets 10 hours out Sat and Sun if she complies. Fantastic. I found it a  struggle initially and was surprised by this. It's because  her SH urges are so strong. I had undestimated the strain this places on everyone. We cannot leave her alone at all - not even for a minute.
We have also told her that unlike the unit, we will not carry over any fortisips - any refusal and we take her straight back to the unit. We've only had to do this once. The same approach applies for SH. She really needs it to be black and white and enforced if necessary. My h and I are getting better at managing her off the unit and the escalation that we used to see is more contained. She still needs huge support at every feed.
We had her tribunal for her Section 3 a couple of weeks ago and they have continued with the section. Thank God. Her consultant has told us she will be in patient for a long time yet.

Today was a huge step for her. Instead of Fortisip for snack - it was a piece of fruit. She has not eaten since the beginning of last September. She did it. Phew.  She wants to get out as she finds the ward so triggering. My concern is that her motivation is driven by just getting out now rather than wanting true recovery. Her AN thoughts are still so strong and entrenched. She still talks about wanting to lose weight etc etc I'm hoping that as she maintains a healthy weight combined with therapy, the ED voice starts to recede.
TF - I'm going to attend the conference in London too - it will be good to meet up with other carers for face to face moral support!!
Have a good weekend everyone
xx

__________________
Mum to 17y/o D living in England. RAN since Sept 2015. Refed at home but after getting within 3kg of WR D relapsed July 2016. hospital twice for 2 and then 5 weeks. Now IP since Sept 2016. Please God we're getting there.
Torie

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Reply with quote  #19 
SHE ATE THE FRUIT!!!!  Hip hip hoorah!!!

Quote:
Originally Posted by catbells
 My concern is that her motivation is driven by just getting out now rather than wanting true recovery.


I really don't think it matters WHY she eats - it only matters that she DOES eat.

My d didn't want to get better.  Not at all.  So she was beyond being motivated by the right reasons - she wasn't motivated at all.  That didn't matter though, as long as she ate.  And she did eat.  And she is better now.

So glad to hear how much progress your d has made!  Thanks for the happy report!  xx

-Torie

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

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Reply with quote  #20 
Catbells, that is such good news, I agree with Torie, they are just not able to see beyond the illness so we just have to push recovery on to them.
Uuggh hideous illness.
I really admire that you & H can manage her at home, i really feel for you, its so tough, but you are making great prigress.
I often think of you.
Great that she seems to be in a place that can manage her & will keep her for a long time to help her into recovery...
Keep going,
We are with you
Xx

__________________
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.
iHateED

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Reply with quote  #21 
Good to hear from you catbells.  You have been at this for such a long time now.  I agree with the others that as long as she eats, it doesn't matter what she SAYS.  It is her ill brain that is talking right now and once she is weight restored, the thoughts will hopefully diminish.  My D would say every day that she couldn't wait to lose the weight again.  Just ignore as best you can.   Keep up the good work and your real D will be back to you again!
K63

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Reply with quote  #22 
Hi Catbells, great to hear from you. Such good news that your d is doing better, the reason why she is I don't think matters her body and brain are being nourished . Wishing you are family well. Take care of yourself.
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Daughter started restricting in February 2014, tried re feeding at home hospital admission 4 1/2 months weight restored started restricting post discharge, back on meal plan full supervision weight restored april 2016. Starting to hand back responsibility for meals it's scary. 
mjkz

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Reply with quote  #23 
I can only agree Catbells.  At this point who cares why she did it-she did it!!!  My daughter has always done things for reasons external to herself and certainly never for recovery.  She still got there =)
Izzo

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Reply with quote  #24 
That's great news catbells - my D has similar SH issues and is now weight restored. She is eating everything but so she is transferred to a non Ed unit focusing just on her mood dysregulation- I'm not keen on this motivation either but hopefully it's a motivation that will head off her ED which I think is still very strong - hang in there - it seems like things are on the up .... izzo x
catbells

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Reply with quote  #25 

Thanks everyone - good to know we're not alone.

[and once she is weight restored, the thoughts will hopefully diminish]

This is a problem in  my view. She is 3kg below her non ED weight and has grown a couple of cm since she's been in the unit.
Her current  BMI is 19.5.
I got it to 20.1 when refeeding last year at home before her massive relapse.
Before ED came to visit she ticked along at 21.5 and looked perfect.

The unit now have her on a maintenance plan and talked about her exercise i.e introducing some more. She didn't have an exercise compulsion previously but it feels like she's getting one now. When she comes home for a day she has a riding lesson and takes the dog for a supervised walk. She also wants to do WiiFit Zumba/dancing for an hour - I don't allow it if she's been riding.
I've spoken to the dietician who has set some groundrules for her and d has responded well and accepts it when we reinforce them. She likes things completely black and white.

I don't think her current weight is high enough. Since I found this forum I have espoused the wisdom and findings I found on here to her about needing to be at a higher weight. She agreed last year and in her more rational moments agrees. However... the experts have spoken and ED has heard. They are concerned that because she was finding the transition from NG so difficult a bigger gain would be scary.
Scary?? Everything to do with food and weight is scary so lets go for it in my opinion.

We had to take her back to the unit early yesterday as she refused her teatime feed and the ED monster reared it's objectionable, spouting nasty things, self. H took her and within 10 mins she called me to apologise.
She is definitely becoming more rational and is responding well but she posted yesterday how she is going to relapse when she gets out (her friend messaged me to tell me).
I keep telling H we are making progress - WE ARE!!!!

Izzo - good to hear from you - I see similarities and I often wonder how you are doing. Hope your d is making progress - so painful.

I've booked to attend the conference on the 3rd so may see some of you there?



__________________
Mum to 17y/o D living in England. RAN since Sept 2015. Refed at home but after getting within 3kg of WR D relapsed July 2016. hospital twice for 2 and then 5 weeks. Now IP since Sept 2016. Please God we're getting there.
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