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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 16y/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
toothfairy

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Reply with quote  #2 
Hi catbells,
Oh man!!! So sorry, I would love to come over & meet you & give you a big hug & very large coffee, ( or adult beverage).
I cant help with advice for good treatment centres there, but I will say, take your time.
You are in a good position if you can pick.

Hopefully the UK people here can point you in the right direction.
Would it be possible to get a consult with Janet Treasure or Dasha Nichols?
And take it from there?

The only thing I will say is try not to let distance be a factor if at all possible.

I am glad the head banging is stopping.
How did you manage to stop that?
What motivated her to stop?
Thinking of you
Xx TF

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Son,DX with AN, (purging type) age 13 in October 2015 ,  (4 months immediate inpatient) ,  Now Phase  2 , making progress every day. Living life to the full like a normal teen. We are not out of the woods yet, but we can see the light at the end of the tunnel, thanks to ATDT.
Optimistic

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Reply with quote  #3 
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  #4 
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  #5 
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  #6 
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  #7 
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  #8 
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

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Mum to 16y/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
mjkz

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Reply with quote  #9 
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  #10 
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  #11 

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  #12 
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  #13 
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  #14 
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. 
toothfairy

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Reply with quote  #15 
Catbells,
How are things?

__________________
Son,DX with AN, (purging type) age 13 in October 2015 ,  (4 months immediate inpatient) ,  Now Phase  2 , making progress every day. Living life to the full like a normal teen. We are not out of the woods yet, but we can see the light at the end of the tunnel, thanks to ATDT.
catbells

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Reply with quote  #16 
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 16y/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
toothfairy

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Reply with quote  #17 
Wow! That's a new one!
That is a very odd way for the NHS to deal with the situation, in particular the use of the wording!!!!
But catbells, if this works, which it may well to get her off the tube, and making more progress, well who cares what they say - great!

Catbells thats fantastic that you were out for 4 hours yesterday, I so much hope for you that this is the corner turned into the start of recovery.
xxxxxx TFt


__________________
Son,DX with AN, (purging type) age 13 in October 2015 ,  (4 months immediate inpatient) ,  Now Phase  2 , making progress every day. Living life to the full like a normal teen. We are not out of the woods yet, but we can see the light at the end of the tunnel, thanks to ATDT.
K63

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Reply with quote  #18 
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  #19 
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.
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