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rolphdog

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Reply with quote  #26 
At the end of the day today, D achieved the target 1600 calories (up from 1400 yesterday), (a bit sadly to my mind) all with fortisip, having not touched any food (though she did spend time looking at afternoon snack and dinner), and drank enough water (a challenge for some reason).

Combined, this was a major step forward and probably the first time since we started tracking meals at the start of Feb that she's had that many calories.

I think there was an obvious lift in her mood as a result; she smiled, started conversations, asked questions about others and in general was a delight to be with.  We saw no melt-downs, yelling or persistent sobbing.  She was also able to attend the school and play areas within the ward.

So today was a good day, and tomorrow we do it all again and, as always, maintain our sense of hope.

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)

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

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Reply with quote  #27 
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  #28 
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  #29 
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  #30 

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  #31 
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  #32 

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
toothfairy

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Reply with quote  #33 
Hi Rolphdog,

You are making progress, it is generally very , very slow.
But you are moving in the right direction. Gosh I am delighted you have a team coming to your home!

So from my experience, at your stage, I would not care how the cals go in, once they are in.
The rest of the behaviours can be worked on when she is more rational.

In my experience, although I see your point about negative consequences, I know that my S would still be ill unless he had negative consequences.
This horrible illness is so strong, that it takes a lot of leverage to move the kid out of the illness into recovery.
That's my personal experience.
For example, sitting at the table for 1 full hour for a meal until its eaten, then an hour supervision afterwards with no bathroom,Life stops until you eat. Basically, my advice to you, is never back down to anorexia.

This is not like normal parenting, this is all counter intuitive. This illness is vile, and any time you let things go ANOREXIA  will win and your D looses.
So, the stage that you are at now, is a time that is really very messy, chances are your D will not even remember this in a few months.

Nutrition no matter how is the name of the game.

For us, after S came out of hospital, I just copied exactly what the hospital did, I sat for as long as they did, and continued the whole IP programme at home.
Now 1 year on, we are doing great, its tough but so worth it, we still supervise etc, but at a distance , and the distance is getting longer.
You are doing great, Recovery is possible, but it takes a long time.
Best wishes 
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.
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