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Zita Show full post »
Zita

Hello, I'd like to tell you how we got on and ask a few questions.

Our daughter, 14 years old, has also been in the hospital for 9 months and will be fed with a tube for just as long. She currently weighs 48.5 kg with a size of 1.64 m. We will soon take her home from the hospital for a hometreatment.

Because our daughter doens’t want to get out of the hospital, it's a real fight with the hospital to get her out. Now the leader of the clinic has agreed with us to take her out. But also the medical team for home had to be convinced.

So it looks like this now:

The doctor near the place we live now organizes a hometreatment. Our daughter still has the tube. She hardly gets any support from the hospital to start eating. After a few months in the hospital, our daughter started massively injure her lip and her urge to hurt herself hasn’t stopped to this day.

My questions:

  1. Has anyone of you had a similar experience that the child did not want to leave the hospital?
  2. If your child had a tube, which food did you start eating? Do you have any tips for us to get our child off the tube?
  3. Our daughter has been in the hospital for 9 months and hasn’t been home. Has anyone of you set up a specific daily schedule?
  4. If your child wanted to hurt herself, what was helpful to stop it?
  5. Thank you for your concrete and really helpful tips so far !!!
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Foodsupport_AUS
My daughter did not stay in hospital for such a long time,  because here there is no facility for prolonged hospitalisations. She did however spend 11 out of 15 months in hospital because of repeated admissions and an inability to eat at home. For her she has said that she found it so hard to eat at home because she knew that there was no NG tube consequence available. She also found it easier to hate the staff at the hospital rather than me. 

If you are going to bring her home then ideally you should keep up the hospital schedule initially. It would also make sense to me that you work on trying to increase her weight further - it is common for our kids not to be fully weight restored and this could be part of the reason why things have stalled. 
You may like to look at Bottle's threads - her D had an NG tube at home for  a prolonged period of time and she was weaned back on to food - very slowly over time. 

As for the self injury it is very common. Trying to limit access to what can be used and trying to keep her thoughts on other things can be helpful. Ultimately for my D her self injury stopped when she realised the number of scars that she was living with, weirdly after that she was able to stop immediately despite feeling strong urges. She had been given other strategies before then but nothing worked. Again there are quite a few threads on this. 
D diagnosed restrictive AN June 2010 age 13. Mostly recovered 10 years later.  Treatment: multiple hospitalisations and individual and family therapy.
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Mamaroo
Here is an excellent threat on super resistors:  https://www.aroundthedinnertable.org/post/the-super-resistors-when-lsuye-and-magic-plate-cause-total-shut-down-8122350?&trail=25#gsc.tab=0

My d was only in hospital for 2 weeks with an NG tube and the hopital staff also didn't really try to get her to eat real food. So when she got home, she ate so little that I needed to supplement with Ensures, with the result that in reality we replaced the NG tube with Ensures. Only when she had gained enough weight to start growing again, were we able to slowly replace the Ensures with food. 
They don't come home cured, unfortunately. The rehabilitation process continues at home and it takes many months of continued supervision to get them over the line.
D became obsessed with exercise at age 9 and started eating 'healthy' at age 9.5. Restricting couple of months later. IP for 2 weeks at age 10. Slowly refed for months on Ensures alone, followed by swap over with food at a snails pace. WR after a year at age 11 in March 2017. View my recipes on my YouTube channel: https://www.youtube.com/channel/UCKLW6A6sDO3ZDq8npNm8_ww
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ValentinaGermania
Zita wrote:
  1. Has anyone of you had a similar experience that the child did not want to leave the hospital?
  2. If your child had a tube, which food did you start eating? Do you have any tips for us to get our child off the tube?
  3. Our daughter has been in the hospital for 9 months and hasn’t been home. Has anyone of you set up a specific daily schedule?
  4. If your child wanted to hurt herself, what was helpful to stop it?
  5. Thank you for your concrete and really helpful tips so far !!!


1. Most of the kids are afraid to go home because this is a change in setting and that is fearful for them.
2. I would start with applesauce (with rapeseed oil in it) and yoghurt (same). Something that goes down easily and is not needed to chew. Then change to some baby glasses with small bits to chew in it. Like feeding a baby and start to eat again. Imagine she is 6 months old.
3. When our d came home we took the schedule from hospital home. Meals and snacks at same times, in between distraction. Does your d have a schedule in hospital? What can you take home from that? It is important to keep them busy (like a toddler) so they have no time to think too much about their situation. Can you have a family member around to help you (grandma?)?
4. My d hurt herself and we stopped it with a punching bag. We told her to hit the punching bag when she had the desire to hurt herself. It took about a week for her to get use to that but then she did it (and I used it a lot, too). They do not know where to take all the anger and agression and I think it is important to show then that they can take it somewhere and not hurt themselves. Not possible with an exercise compulsion for sure...
5. You are very welcome and we are all here to help you for D-Day!
Keep feeding. There is light at the end of the tunnel.
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