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

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Hebrides
D has been in (general) hospital 2 weeks now following 24 hours no fluids and steady weight loss since last admission 6 weeks ago. Some of you will remember she spent pretty much all of last year in hospital and specialised unit.

She has gradually started eating - though not yet up to all meals/snacks - and what she refuses goes down the ng tube. She is struggling more with drinking - so bar a few mouthfuls all her fluids are also going down the tube.

She can't trust us when we/doctors tell her water has no calories; she can't trust bottled water because AN convinces her that manufacturers are lying on the label... I just wonder if others out there have had similar situations and how you got through it?

She has also been struggling with overwhelming feelings after eating and has been escaping off the ward much as happened this time last year. We have a horrible sense of deja vu - we are so worried if these behaviours continue then there will be no choice but to use MHA and possibly emergency transfer to a unit - she is also very scared too. The preferred option is to come home but still have backup from the ward (I would love that to include being able to go back there as soon as a meal is missed), and to continue working with CAMHS all of whom she knows. This seems especially important given the possibility of an autistic diagnosis which we are just beginning to explore.

She has been given home leave for snack this afternoon - in the hope this will relieve some of the bad feelings and help to motivate her. 

Would love to hear any advice on getting her drinking again - obviously a prerequisite for discharge.

xx
Mum to 17 year old daughter with AN,1 year IP from Feb 2015, discharged Feb 2016, WR but mentally nowhere near where she needs to be. Remained stable but rapid weight loss again leading to admission to specialist ED unit Sept 2016. Back round the circle...
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cnkinnh
My D also struggles a lot with drinking; more so than eating, but her situation is different from yours - it's not about the calories for her, and we haven't had any outright refusal. For the most part, she does what she's told, but any increase of fluid intake on a particular day beyond an ounce or two will be met with a lot of resistance.

So I'm not sure how much help I can be...I will tell you that my D has an easier time with fluids that are "disguised" as solid food. For example, she mixes her milk with oatmeal in the morning. A bowl of ice cream is preferable to a milkshake (even if the calories/fat are equivalent.) Ice pops might be another idea.

Other than that, I'd recommend starting small and increasing gradually.

That is great that she is doing better with eating on her own! I hope her home leave today yields some positive results.
15yo D, first diagnosed 2015 with RAN. Diagnosis changed several times along the way, they are currently saying lifelong mild ARFID, complicated by major depression and AN starting age 13. Everything is atypical with her. FBT less and less effective after 2+ years. 
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Psycho_Mom
Hi,
I also have nothing brilliant to suggest except that telling her water has no calories may be the truth, but it's not the way to go. First of all, it's appeasing ed (if it had calories she'd STILL need to drink water) and second of all logic doesn't work. Remember Eva Musby's bungee video, and getting a child to eat (or drink) with love and trust, not logic. It's not that she needs to trust you that it has no calories (again, that's just appeasing ed); she needs to trust you that it is OK for her to drink water. That it is safe for her, that she won't die if she drinks water.

Arguing logically with ed (even if it's something SO logical as the safety and necessity of water) is just a hopeless task. SAve everyone some energy and give up trying to convince her. She needs to drink water. Period.

 Maybe serve her a small quantity (an amount that, while it may be hard, you know is doable for her) and serve her that small quantity often, each time requiring it before anything else happens.

Maybe have a look at Tamar Chansky's Freeing Your Child from Anxiety; there are suggestions for stepwise exposure to anxiety-provoking things. 

I know your child is very ill and you've been through a lot for a long time, so you may know all this already.


How does she feel about ice?

best wishes,
D diagnosed with EDNOS May 2013 at age 15, refed at home Aug 2013, since then symptoms gradually lessened and we retaught her how to feed and care for herself, including individual therapy, family skills DBT class, SSRI medication and relapse-prevention strategies. Anxiety was pre-existing and I believe she was sporadically restricting since about age 9. She now eats and behaves like any normal older teen, and is enjoying school, friends, sports, music and thinking about the future.
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Morgana
Is she on medication? My d refused olanzapine which was disappointing as the psychiatrists and psychologists were all saying how much it would help her. The only way they could make her have it was if she was sectioned and they couldn't section her just for that, so every time she started refusing feeds we hoped she would be sectioned. Sounds awful but I just wanted her to have some relief.

Does she accept the water down the tube? My d struggled with drinking water until recently, but she accepts water in the ng tube, most of the time. Sometimes she says it makes her feel too full, which is her way of saying too fat [frown] 
When d was refusing to drink water I asked them to put it in the tube and try again in a few weeks. It took a few months until eventually she accepted 20mls to drink, then suddenly jumped to 200mls when she realised it was okay, nothing bad happened when she drank water.

Hope this helps
xx
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.
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iHateED
Thinking of you Hebrides.  Hang in there! 
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floating
Hebrides sorry you are going through difficult times
May the road be less bumpy soon
Just sending you a big hug from one mum to another xxx


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Hebrides
Finally got a few minutes to catch up on the forum...

Thanks so much cnkinnh, PsychoMom, Morgana, ihateED, and Floating for all your replies/support - PsychoMom, you helped me make an important shift, thank you, though with little effect yet. And I should really watch bungee jumping at the beginning of every day...! I will definitely get hold of Freeing your child from anxiety. 

Morgana - she's been on 20mg Olanzapine and 60mg Fluoxetine for some time. It's so hard to know how much these are helping as we can't compare with her meds-free state. It's great that your d has overcome her fear of fluids and is drinking now.

So - the last few days have been a roller coaster. At the end of last week the running-off-the-ward incidents were increasing, so CAMHS suggested a change in plan - be to be allowed time off the ward (in wheelchair) after each meal, to divert into quiet sensory room when flight urge kicks in (fine if I can catch her first...) and a couple of hours home leave in afternoons. This worked ok over the weekend, but things deteriorated again on Monday. D was still accepting food/fluids down the tube, eating some but not all meals, had several attempts to run but I did manage to hold on to her. Yesterday she escaped in the morning, then hung on to tube and refused to allow anything down it, despite knowing this would mean no home leave. By late pm consultant and CAMHS arrived and because d is now medically stable, consultant said she was unable to place d under section at that point - so plan was to come home, but return to ward for rehydration if little/no fluids over following 24 hours. If d refuses to comply that will lead to section. If d does manage to eat/drink at home but continues to restrict and lose weight over coming weeks, she will be admitted, ng tube in immediately, sectioned and transfer to a unit put in place.

So home we came and d refused her meal. After bringing her back to the table several times she lost it and started throwing things - the phone, pots of custard (messy!) etc and hitting self and h. We told her calmly we would phone police if she didn't calm down, so she screamed she would phone them herself and say h was abusing her... Not had this behaviour before, but I know from others' stories it's not unusual. She kept screaming that she has no control, no choice as to whether she eats or not - she simply cannot. We gave her 5 mins then went upstairs (she didn't phone) and found her sitting in a corner with a shoelace pulled tight around her neck... I know from the times when she did this in the unit last year that the worst she could do would be to pass out, but still scary to see and heartbreaking. Thankfully she let me remove the lace and then cried and let me hug her. Another hour and she was happy to play a game. Tried again with food/water, again refused but eventually agreed to a bowl of ice cream and about 20mls water. I know that's not much and not what she should be having and will not be enough in itself to prevent going back to hospital, but it felt like a tiny victory in this immense battle with her AN. 

So today is another day -I'm dreading it, of course. 

Sending hugs to all of you out there fighting for your loved ones' lives. 

xx
Mum to 17 year old daughter with AN,1 year IP from Feb 2015, discharged Feb 2016, WR but mentally nowhere near where she needs to be. Remained stable but rapid weight loss again leading to admission to specialist ED unit Sept 2016. Back round the circle...
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K63
Hi Hebrides, thinking of you hope today was better i. Your poor d is being so tortured and it's so difficult to watch. It's great that she ate even though it may be small. She showed emotion and she allowed you to hug her.continue to bring her to the table and that you expect her to eat like the rest of the family. Hope you are getting time to care for you
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. 
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floating
O Hebrides...........thats not good, grrr
Nasty ED very strongly at play and torturing your poor girl

Shoelace thing must be so blinkin scary for you all.......would scare me for sure

The restriction on water is pretty serious and I feel surely D should be at least drinking the required 2000ml fluids before being discharged

I hope tomorrow is much better..........why they restrict water is beyond me as zero calories, We have not had a fluid issue as of yet

You are in my thoughts xxxx


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ed_newbie
Sorry things are so tough right now. My d is also having issues with fluids at the moment. At her appointment last week the nurse took her blood pressure and it was so low she said had we been at a hospital they would have immediately started IV fluids. Interesting that her paternal grandfather who passed away last year always seemed to limit fluids. I'm convinced he suffered from ED as well.

"Lineage, personality and environment may shape you, but they do not define your full potential."    Mollie Marti  

ed_newbie

15 yr old d diagnosed with AN late December 2015 at the age of 12 after a 23 lb weight loss during prior 3 months. Started FBT/Maudsley at home on Christmas Eve with support from amazing local nutritionist specializing in ED and trained in FBT. WR Feb 2016 and pushing our way through puberty and rapid growth.
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catbells
Heartbreaking and scary. I have no advice but am thinking of you all as you battle through today. As K63 said your d allowed you to hug her. Your real d is in there fighting to get out. You are a hero.
Much love 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 and then IP  Sept 2016 - Jan 2018. Now continuing the battle at home...
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Hebrides
Thanks all. Yesterday was another tough day - we had to go back to the ward to collect meds and discharge letter as they weren't ready when we left. I asked to see consultant as d had had the tiniest amount of food fluids  in the 24 hours since we left. Having said the previous day she would readmit d for rehydration at this point, I was taken aback when she said we should go home and phone the ward midday today if the situation was no different. She would then mobilise CAMHS for psych assessment and begin bed search in a unit and d would have to go straight to adolescent "holding" bed in local adult psych ward (which CAMHS had told us last year they didn't want d to go to as staff not at all clued up about EDs, totally unsuitable place for young person etc.)

So we came home again - and d ate a little and drank a little. She is clearly terrified (as am I) by the scenario outlined to us, but feels she has no choice even though she desperately wants to be able to stay at home. I woke today with a horrible tension headache and that dread of what the day might hold, but somehow we have got through the day and d has eaten something at each meal + snack (way less than she needs, but I reckon I need to nudge her gently upwards over the next couple of days) and has drunk 35mls each time too. Sometimes there was a period of refusal/resistance and saying she couldn't do it; I spoon fed her weetabix this morning and miraculously she let me! Other times she just got on with it. So she has battled incredibly hard to earn tonight in her own bed and we are so proud of her. I know having to do this day in day out will be such a struggle - she said today that it was hard to choose to do it because she had no idea how long it would take before she felt any better whereas she knows that if she doesn't eat and drink at all she will die... ugh. If at any point she has 24 hours complete starvation again, then the above plan would be put into action.

We had a CAMHS family therapy session too - the outcome of which was a referral to the newly appointed psychologist at CAMHS, arrangements for community nurse team to visit regularly for physical checks, family therapist will visit us at home tomorrow evening, and we are on the list for weekend support (duty CAMHS nurse will phone each day). So it feels like the level of support might be stepping up a bit, which feels good. 

It's weird - apart from being utterly utterly exhausted from the events of the last few days, I feel curiously elated that today my beloved d actually did eat and drink what I asked her to. I know I will have to challenge her with more tomorrow, but for now, it's enough.

Goodnight everyone - wishing you all a good night's sleep.

xx

Mum to 17 year old daughter with AN,1 year IP from Feb 2015, discharged Feb 2016, WR but mentally nowhere near where she needs to be. Remained stable but rapid weight loss again leading to admission to specialist ED unit Sept 2016. Back round the circle...
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mnmomUSA
Oh, small steps forward!  Good for you.  So glad that she is eating and drinking, even if not enough.  I hate ED!  I just hate it.  So terribly unfair for it to torture our children.


D, age 18, first diagnosed March 20, 2013, RAN, at age 13 Hospitalized 3 weeks for medical stability. FBT at home since.  UCSD Multi-family Intensive June 2015. We've arrived on the other side.  :-)  D at college and doing great!
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deenl
Hi Hebrides,

Hebrides wrote:
I know having to do this day in day out will be such a struggle - she said today that it was hard to choose to do it because she had no idea how long it would take before she felt any better whereas she knows that if she doesn't eat and drink at all she will die... ugh. If at any point she has 24 hours complete starvation again, then the above plan would be put into action.


This is exactly how my son felt. I think it is a double whammy of anxiety, stuck between a rock and a hard place and totally petrified. I found that anything I said ramped up the ED feelings, but if I was silent he could find his own courage. Any hint of having to go back IP freaked him out and was totally unhelpful. I constantly promised that if he kept this up he would stay home and bit by bit the emotional horror of that time has passed. It did take months though (he didn't increase weight for 5 months and since then it has only been .5kg per week and he started 60% of target weight and has at least 10cm growth to catch up on. Sure hope we can go quicker later in the process)

It sounds like you did a wonderful job of providing a safe and loving environment. I read that people with active ED interpret neutral tone of voice and facial expressions in a negative way e.g. anger or disappointment etc so I am really careful to express understanding, warmth and affection. I think these have been our greatest tools in the fight. That and massive amounts of patience. Sigh.

Wishing you another reasonable day,
D
2015 12yo son restricting but no body image issues, no fat phobia; lost weight IP! Oct 2015 home, no progress. Medical hosp to kick start recovery Feb 2016. Slowly gaining at home, seeing signs of our real kid.

May 2017 Hovering around WR. Mood great, mostly. Summer 2017 Happy, first trip away in years, food variety, begin socialising. Sept 2017, back to school FT first time in 2 years. 2018 growing so fast hard to keep pace with weight. 2020 Off to university, healthy and happy.
  • 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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Hebrides
Hi all,

We somehow limped through the weekend - eating wasn't TOO bad, although still not enough, but drinking continued to be a major struggle. I started off with a tiny measuring glass of 35ml with each meal/snack, in the hope that would be manageable and we could then gradually increase, but even that took hours and hours of support. Even older d's arrival back from uni for a few days to be with her sister couldn't shift her. By yesterday afternoon, when she had had no more than a few sips of water, I was getting concerned, so contacted the ward and agreed a plan where we would give her 4 hours to drink 100ml water, and if she couldn't I would bring her in for bloods, obs and ng tube. Much to older d's frustration, d just couldn't do it, so off we went. I am finding it so hard to understand why fluids are so difficult. Passing the tube was interesting - when it was nearly down the end appeared out of her other nostril..... Anybody else had that happen?? Thankfully better on the 2nd go, though d was super stressed and anxious and legs shaking uncontrollably by that stage. Poor girl.

I spent this morning with her - still unable to drink but at least having it down the tube. CAMHS came and it was agreed with consultant that d will stay till tomorrow evening then come home, but be able to go straight back if can't manage drinking. Part of me doubts that anything will change, but also part of me wants to give the added support CAMHS are offering a chance (we meet with family therapist and new psychologist on Thursday), in preference to an emergency section/admission to a unit. H came to relieve me and within a few minutes d ran off the ward again. H found her but she was loudly complaining about him restraining her... We got her back to the ward although she was still v distressed and hyperventilating and I sat with her curled up in a ball in the sensory room for some quiet time. D said she wanted some time alone so h sat outside room. I then came home for a break - in theory.

Just had a text from h a few minutes ago to say they had found her trying to strangle herself with fibreoptic light cables - she is physically ok, but CAMHS are being summoned again... When, oh when will this all change? I feel at breaking point again and the last few days have depleted my energy levels completely. And I was so looking forward to a few hours at home........

Sorry to moan - I'd better get back to hopsital.

xx


Mum to 17 year old daughter with AN,1 year IP from Feb 2015, discharged Feb 2016, WR but mentally nowhere near where she needs to be. Remained stable but rapid weight loss again leading to admission to specialist ED unit Sept 2016. Back round the circle...
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deenl
Big hug and virtual support to you all.

Wishing you strength,
D
2015 12yo son restricting but no body image issues, no fat phobia; lost weight IP! Oct 2015 home, no progress. Medical hosp to kick start recovery Feb 2016. Slowly gaining at home, seeing signs of our real kid.

May 2017 Hovering around WR. Mood great, mostly. Summer 2017 Happy, first trip away in years, food variety, begin socialising. Sept 2017, back to school FT first time in 2 years. 2018 growing so fast hard to keep pace with weight. 2020 Off to university, healthy and happy.
  • 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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K63
Hi Hebrides, thinking of you it's so difficult . Is your d on any medication would the team suggest something to help her. she is being so tormented by her thoughts .
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. 
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Sotired
Our d had trouble drinking fluids for a long time.she would call me a ton of names while I tried to get her to drink half a cup of water.in the end they put water down the tube every hour and when they flushed it.i am so sorry that you and d are so tormented by this.you must just feel exhausted.remember to eat something when you get to the hospital and have something to drink.(I suppose it has to be non alcoholic...sigh..).take a magazine or a puzzle to do together if your d is up for it,silent support whilst reading a magazine otherwise.sometimes I just lay on her bed with her whilst I read so that she could feel safe for a little bit.these times are hard on us as caregivers as well as them as patients,so be kind to yourself.
Hugs,
Sotired42
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OneToughMomma
I just want you to know that I am holding you and your family close to my heart tonight.
xoOTM
D in and out of EDNOS since age 8. dx RAN 2013. WR Aug '14. Graduated FBT June 2015 at 18 yrs old. [thumb]
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hyacinth
I am really sorry your D is going through such a hard time. My personal view, based on what my own D has gone through (so it might not be right for your D), is that when anxiety sets in and takes over, the "reason" for the anxiety does not seem relevant any more. The 2 things that have helped us most through the hardest times are 1) very small gradual increases (and in the case of our D, certain consequences when she can't manage those increases); and 2) calm reassurance from an empathetic doctor that they understand she is trying very hard and that they are confident she will be able to manage these next steps (I also provide this reassurance, but it seems to have added weight when it comes from a professional she trusts).
Things will get better.
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Hebrides
Thank you all so much for your messages of support and practical suggestions - they have helped carry us through the last few days. I don't know where I would be without the forum...

The outcome of discussions with CAMHS psychiatrist (new chap as our regular was on leave) and nurse (whom we do know quite well) was that he felt d would benefit from treatment in a unit again and that being on the children's ward was not helping the anxiety levels. She was given 2 mealtimes to eat and drink fully which would mean discharge home while bed search progresses - and she did it, every last drop. Unbelievable. What's more, she has been fully compliant with the fluids at home over the past 3 days - she says it's because she doesn't want to go back to hospital before going to a unit. She has been mostly compliant with food, although refused part of breakfast today. Grrr.

We are still recovering from the shock that she suddenly started drinking again. I can't keep up with these rapid turnarounds - this week has felt as long as a month! In the meantime CAMHS have been working hard putting a community nurse in place who will come and do bloods, orthostatic BP etc twice a week and generally check d is physically stable. Our family therapist had a long conversation with her and gave her a heads up on what to say/not say with an ED patient; I think I might give her some written information too. CAMHS weekend service will also visit tomorrow - we've had the option to call them before, but having a check-in in person will be good. Family therapist is still hoping that with the extra support d might still be able to do this at home, but agrees that bed search should continue in parallel as things can change so rapidly with d's presentation. As far as d knows, she is going to a unit and that's that - which I think is why she restricted breakfast ("I can't go to a unit this big, I'll be bigger than everyone else there" - we know the rubbish ED says at this point).

So, onwards we go. There is a weird kind of calm now after the trauma of the past week - is it really only a few days since I sat with d for hours trying to get her to drink a few sips? Phew. 

xx


Mum to 17 year old daughter with AN,1 year IP from Feb 2015, discharged Feb 2016, WR but mentally nowhere near where she needs to be. Remained stable but rapid weight loss again leading to admission to specialist ED unit Sept 2016. Back round the circle...
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Francie
Thinking and praying for you and your family, Hebrides. Sounds like you are doing all of the right things. 

Francie

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