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momon

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Reply with quote  #26 
Hi Rolphdog

Just want to send out some support for your family, and praise you all for getting the intensive help she needs to be safe. Your d is now on the road to recovery and that is a huge victory right there! My d fell ill at 10 also , diagnosed in March 2013. I remember well how terrifying it is to have such a small child be so ill.  You are all doing great to figure things out and learning to support her back to health.  My d is doing well now. She never gave up solid foods so I don't have advice on that, but I want to give you a little reassurance: the folks taking care of her have surely dealt with this one before and will advise you, and it sounds like you are in a skilled hospital which is excellent!  

One bit of advice is to start now about thinking of how you will recharge and keep yourselves sane as you get her back to health. You see that calmness is so helpful, for parents sometimes that means walking away and coming back to work on getting the food in when you can get back to calmness. Eva Musby has some mindfulness recordings especially for us caregivers you can download, search on here for the link. I never had a moment's interest in that kind of "mumbo jumbo" before my daughter's illness and now I have found it to be powerful and helpful in keeping sanity and balance together in tough times.

As others have said, there is no reasoning with a child with a starved brain, frankly we still can't reason much with ours (!)  but she knows she has to eat and keep weight up to do the things she wants to do. You will get there too and it will happen much more easily as the weight goes back on and as time passes to allow the brain healing to happen.
Torie

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Reply with quote  #27 
Quote:
Originally Posted by rolphdog
If anyone reading this knowns of posts covering encouraging EDi's to move from fortisip/supplements back to solid foods, I'd love it if they could point me at them (I spent 30 minutes searching the archives but didn't see anything) so I can build my knowledge (given our main goal at present is stabilising eating and getting the calories / nutrients, I'll be OK with fortisip if that's what it takes for now)


Sorry I can't remember who it was, but someone recently commented that they always served their d solid foods at every meal/snack even though she didn't eat them.  Maybe she would take a bite?  The foods she was offered during that phase were later easier for her to accept than the foods they hadn't put in front of her during that time period, even though these preferences were atypical for AN (e.g., she would eat meat but not fruit, if memory serves, as she had consistently been served meat but not fruit).
 
Someone - Boots, maybe? - had a fantastically hard time getting her d to eat solids again.  I think she did things like have her d dip the spoon into the food as a first step.  It was a while ago - sorry I can't remember too well.  I think her d might have had ASD issues so a really tough case.

In general, what matters is getting their weight up where it needs to be.  Once they are weight restored, things usually get much easier. (Although maddeningly slowly.)

Keep up the good work!

-Torie

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

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Reply with quote  #28 
We had lots of meal supplements with Fortisip for my D when hospitalised. The hospital had the rule either the whole meal goes in, if not Fortisip goes in orally, if not it goes in via NG tube. Every time. No allowances. D in her ED addled state would always calculate what she thought the caloric content of the meal was and only eat it if she thought it was lower calorie than the known quantity of Fortisip, and choosing the NG tube when things were really tough. 
After a while the hospital became concerned about this as for a while most meals were Fortisip. They simply increased the size of the "meal replacement" so that calorically it was bigger than the meal it was meant to replace. D switched back to food straight away. 

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D diagnosed restrictive AN June 2010 age 13.5. Weight restored July 2012. Relapse and now clawing our way back. Treatment: multiple hospitalisations and individual and family therapy.
rolphdog

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Reply with quote  #29 

Day 3 in hospital was another calorie success, with D taking a stepped-up-by-200 1800 calories, all through fortisip (drunk in under 60 secnds each time. D didn't pick up a spoon or fork to touch the food, which is always presented, using the same protocol that @foodsupport_aus mentions). We haven't had any extreme outbursts of anger or sadness, which seems good (taken together with the increased calories), and her mood, overnight minimum heart rate, and sitting/standing blood pressure change are all better.

The nurse yesterday was unclear how much water D had drunk and wasn't clear on whether she had to drink it or not, and by when, which let the AN thinking run free (though a sip or water was taken). I've asked if we can be clearer on the expectations and timings so that it's easier for all of us.

MrsRD and I also got to meet up in person with @blommie yesterday which was brilliant. It's amazing how much comfort I can get from being face to face with other's in the same situation (or further on in the illness treatment).

D coming home for a main meal and a snack today, and three 'sessions' tomorrow.

@momon - thanks for sharing your experiences. Each time I hear that others have had a child recover from a similar situation it's reassuring. The extreme fears "she's going to starve to death!" are reducing in intensity day by day, replaced with an optimism that we're on the path to recovery and 'just' need to keep doing what we're doing for the time it will take.

@torie - thanks for your comments on the calmness. I agree and have been using the Headspace meditation app each day - which has been very helpful.

@foodsupport_aus - that's a great point about the AN thinking weighing up the difference between the meal and the fortisip. D has been reviewing the daily meal plan sheet like a hawk and double checking the ml's of foritisip with the nurse so it's clear she's extremely focussed on that. I like the idea of ramping up the fortisip higher than the meal as an encourager. I'll discuss that and the timings with the treatment team.


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10yo D diagnosed Mon 27 Feb 2017, now refeeding
iHateED

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Reply with quote  #30 
Thinking about you Rolphdog and Mrs Rolphdog too.  How are you doing?  And how did you do over the weekend with your D spending time at home with you? 

Sending positive thoughts your way [smile]
rolphdog

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Reply with quote  #31 

I thought I'd post a quick update.

The short story is that she's not eaten any solids since the second day in the hospital, but is drinking all of the fortisip (now on a 2000 calorie a day 3 meals / 3 snacks roster) with water as well (this was a real struggle for some reason). The weight is coming back on (1.1kg for the 8 days in the hospital, waiting to see this week) and we're seeing improved mood (less shouting / crying / yelling / hitting / refusal). I've read that in Stage 1 the key thing is weight gain, so we're pleased with that aspect. The plan is that once she's increased her weight some more it will be possible to focus on reducing the 'dependency' on fortisip.

D spent 8 days in the paediatric ward at St George's and came out last Wednesday. Aside from the first dinner, she didn't eat any solid food, but after the first day (where she was very angry and shouting with the staff who had to take her to a side room to calm her down) she drank fortisip at all meals. My hunch is that the threat of having a tube fitted was key.

The weekend visit home was a challenge in terms of angry behaviour, but she still managed the fortisip (though it came down to the last minute of a timer and she shouted in my ear at very close range when I tried to take her drink away at the end of 30 mins + 10 mins). She was similarly angry and difficult when she first came home after the discharge, with a 2 hour 30-minute supper session before she drank the fortisip and water (I wore earplugs this time, to avoid damage to my hearing from her shouting). She had a similar shouty stand-off with MrsRD the next day, but as MrsRD stood her ground, D drank the water and hasn't threatened to not drink water or fortisip since.

Although I'm not a fan of negative consequences, I watched the nurses at St George calmly and firmly indicate that a tube would be fitted if D didn't eat. They allowed a bigger impression of it about to happen imminently ("get the tray!" said one, ominously, to another) even though they need to wait for some time and go through many steps before it would be possible. I modelled this when D came home, by saying if she didn't eat then I'd "have to put her in the car" (and deliberately didn't say what would happen) which resulted in her eventually drinking water. It was as if we had to "lay down the law" so she could tell her eating disorder that she had no choice, but that's just my speculation.

The Springfield CAMHS team have been visiting for a meal session at our home each day, who are interesting to watch (they are very calm, going for small steps such as 'looking at the food') and haven't yet got her to do more than touch a spoon. D is off for a day at Springfield tomorrow. I'm predicting that now that we have the fortisip established, I may need to switch my approach to being more supportive and facilitating rather than challenging or 'threatening' negative consequences (not my preferred strategy, but at the end of a long session of refusal, it did prove useful).

This site has been a great source of help, and @blommie has been a great support via whatsapp messages during some of the peak moments.


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10yo D diagnosed Mon 27 Feb 2017, now refeeding
rolphdog

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Reply with quote  #32 
Just providing an update in case other's are reading this in future and wondered what happened.

D is still 100% dependent on Fortisip (we got a prescription for what I suspect should have been 4.2 litres, but ended up being 42 litres, filling our car's boot at the chemist) and hasn't touched any solid food (even with her fingers / fork) or drink other than water for the last two weeks.

She had a weigh in on Monday and her weight was identical to the previous week (81% W4H), which was disappointing (though at least not a reduction in weight), so now we're more vigilant about making her sit rather than stand, and to spend more time outside of her room in case she's doing something that's burning calories.  We've also added a lot more fortisip each day.

She went back to school for a single lesson today, the first time she's been back since she was diagnosed at the end of Feb.

Her mood is improving and she's slowly able to talk and listen more about the illness, though she still doesn't think she has any illness (she's now able to say she knows other people think she has an illness, and that they might think she's silly to not agree) 



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10yo D diagnosed Mon 27 Feb 2017, now refeeding
rolphdog

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Reply with quote  #33 
Hi @toothfairy,

Yes, we're not too focussed on talking to her to explain the illness (though curiously, the CAMHS psychiatrist who started out with the goal of Family Based Treatment told D in a private conversation that D "had to tell" the psychiatrist her reasoning for the ED, which the psychiatrist then said she couldn't share with my wife and I because she'd told D she wouldn't. Not a big issue but just a curious moment in treatment that doesn't seem consistent with a "we should be an aligned team and avoid the ED person splitting the team / family / parents" idea), we are just noting (even small changes) in how she talks about it, as I think that when the weight's back on in future we'd use this as one marker of improving health. Is that not a relevant marker of improvement?

We - and the CAMHS team - don't want our 10yo in an specialised ED inpatient unit - where she's likely to be around older ED patients and may pick up unproductive behaviours - unless it's necessary. Whilst we're seeing good conformance to the fortisip (or ideally solid food/drink at some point in future) and we can ensure she's not exercising (which we feel confident about) and the weight keeps going up then we don't think it will be necessary

We've had the CAMHS nurses visit our house for the first week out of hospital so have had their coaching on how to talk at meal times (we're still running the 3 meals, 3 snacks, with 30/20 minutes to eat the food we plate - aka magic plate - and then presenting the fortisip) and have read / watched the Eva Musby material. We're now week 6 of the meal plan and will continue.

In terms of the fortisip dependence, we're still waiting for further weight gain, but once that's achieved the plan is to work with a psychologist on the CAMHS team to design a behavioural approach that might (further) encourage her to take steps back towards real food and drink. We've already worked with the nurses to come up with a list of small steps D could take back towards this goal (e.g. "look at the food on the plate", "describe a food on the plate", "put a piece of food on a fork", "talk about what it's like to eat at school lunch", "cut / stir or mash a piece of food on the plate"). She's refused to do any of these, though when asked she can recall them all (which was a micro-step - "see if you can reflect or think about the small steps you could take").


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10yo D diagnosed Mon 27 Feb 2017, now refeeding
Mamaroo

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Reply with quote  #34 
Wow, you are doing a great job. Initially my D didn't gain weight, but slowly the weight came back. I think the organs first need to heal and then the weight will come later. We used exposure therapy to get her back onto foods. First just look at the sandwich, then next session, take one bite, next session eat a quarter, and so on. It took about 6 weeks before the whole sandwich was finished, but after that the rest of the food was easier.
Good luck and please keep us posted!

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D became obsessed with exercise at age 9. Started eating 'healthy' at age 9.5. Restricting couple of months later. IP for 2 weeks at age 10. Slowly refed for a year and WR at age 11. Challenging fear foods now.
Torie

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Reply with quote  #35 
Hi Rolphdog - Thanks so much for the update - I was wondering how you and your d were getting on.  It sounds like you're doing a great job - just keep going. 

-Torie

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

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Reply with quote  #36 
It seems like you have a good support system in place for all of you.  I would stay away from any talk about her illness or engaging with ED thoughts as much as possible.  She is so young at only 10 years old and probably has no clue why this is happening to her.  It's such a hard illness for adults and even the professionals to understand.  You don't need to see insight at this stage.  When she is improving, you will know it by all the other signs of her being a normal kid again!   All you need to do right now is get her to gain weight and eat.  If I were in your situation, and my D was just drinking the Fortisip, I would figure out how to up those calories.  Can you add any oil to the drink without your D knowing.  In the US, we use canola oil, you may call it rapeseed oil. If she has no problem drinking her meals, I would make a smoothie in the blender next.  Maybe make one with the Fortisip and add some caloric ingredients such as high fat yogurt, heavy whipping cream, oil, and blend it with some frozen fruit.    Hang in there! 
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