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Ranchell01 Show full post »
Ranchell01
Thank you everyone.
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ValentinaGermania
I think it is a strange idea to give tube feeding over night...normally the stomach and the intestine system sleeps at night and that has a reason...
Keep feeding. There is light at the end of the tunnel.
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Foodsupport_AUS
A number of eating disorder units give overnight feedings via NG tube with normal day time meals as well. It seems to be a relatively common protocol. This excerpt comes from the re-feeding protocol of Westmead Children's hospital which is a highly regarded hospital in Sydney 

Aim for a gradual return to a healthy eating pattern while gaining approximately 0.8–1.0 kg per week (with or without the assistance of nasogastric
feeding).
• If nasogastric feeding has been commenced it is weaned. Once the vital
signs are maintained without overhead heating, nasogastric feeds may be
continued only overnight. 1000 kcal are given of a 1 kcal/mL formula at
314 Appendix
100 mL/h, between 8 p.m. and 6 a.m., in conjunction with a 1500 kcal menu
plan. The overnight nasogastric feed is reduced by 300–500 kcal aliquots at
the biweekly meetings if eating and weight goals are achieved, with equivalent (or slightly greater) increases in the daily menu plan

It is found in this http://www.ipcommunications.com.au/pdfs/ibi-13-appendix.pdf
D diagnosed restrictive AN June 2010 age 13. Initially weight restored 2012. Relapse and continuously edging towards recovery. Treatment: multiple hospitalisations and individual and family therapy.
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Enn
Ranchell01,
Just wanted to reach out. 
I do hope things are improving on your end.
When within yourself you find the road, the right road will open.  (Dejan Stojanovic)

Food+more food+time+love+good professional help+ATDT+no exercise+ state not just weight+/- the "right" medicine= healing---> recovery(--->life without ED)
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Ranchell01
We are starting week 4 of overnight tube feeding. My d has been achieving a steady weight gain now of 0.5-1kg. The plan was to give a break to the anxiety, a symptom interruption, and to reintroduce food once weight restored in about 3-4 weeks.
she is very down at times bit then we get periods during the day of brightness and glimpses of her old self. She is still on Olanzapine at present and the consultant wants me to think about an antidepressant as Olanzapine isn’t great for longer periods. 
It will take a few months to start having effect. I am not sure how I feel about this at present. Any thoughts ? He is talking about an SSRI. 
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Enn
I am glad the weight is going up. 
My d is on sertraline and she has found it helpful and so far, at two years in she is still
on it for anxiety. Some have found that with the weight and time they did not have much anxiety and did not require meds. I am a proponent of trying and seeing how it goes as long as under proper medical supervision. 
If it helps even a little,  it may make  it easier for her and you.
When within yourself you find the road, the right road will open.  (Dejan Stojanovic)

Food+more food+time+love+good professional help+ATDT+no exercise+ state not just weight+/- the "right" medicine= healing---> recovery(--->life without ED)
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sandie
My D started sertraline recently for low mood and anxiety and it is helping. I started it also for stress/anxiety and it has really helped me (stopped chest-pain, tearfulness and has made me much more able to cope). I never expected to need for myself or my child.
Courage is not the absence of despair; it is rather the capacity to move ahead in spite of despair
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sk8r31
We are another family who benefited from meds to reduce anxiety, both for d during refeeding & beyond (she had anxiety pre-ED), & for myself for about a year when life was just overwhelming and hard.  As scaredmom says, under medical supervision, it can be worth a shot to see if it helps.
It is good to not only hope to be successful, but to expect it and accept it--Maya Angelou
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mamabear
I just read this entire thread. And it pains me to hear of the old school negligent treatment of your child. 

I want to really impress upon you the importance of understanding there is no such thing as “ weight restored”. Weight is a moving target. She is 12. She is going to need to gain a lot and grow and go through puberty etc. She needs to morph into a woman. So right now- there is no magic number. Most of us with kids in recovery didn’t see full recovery until our kids got to a minimum BMI of 22-26. Unfortunately 99/100 times the “ team” sets weight too low. 

The anxiety you describe is completely NORMAL. The brain in a starved state doesn’t work correctly. For your daughter instead of feeling pleasure with eating she experiences extreme fear. That is how the brain short circuits in EDs. And the ONLY way to get out to the other side is to face the fear head on. It is exposure therapy 6 times a day every day. It’s hell at first. But it gets better in time.  

My daughter was 10.5 when diagnosed. She threw things, spit in my face, screamed, begged, cried, talked about her death and funeral, showed me what dress to bury her in, punched her dad in the face etc etc etc. Her anxiety with refeeding was sky high. And we got through it by turning our house into an inpt unit ( she was in a hospital for 27 days and it was a disaster). Locks off doors, slept with her for a year, sat outside shower and toilet. Never left her alone. Stopped all exercise. All sports. All activities Ate with her at school every day for 2.5 school years. 

My d had severe panic attacks, auditory and visual hallucinations, an extreme exercise compulsion, severe deoression and anxiety and OCD rituals surrounding movement. ALL WENT AWAY WITH FAT, FOOD, WEIGHT GAIN AND TIME. 

3 meals and 3 snacks EVERY day. 
High fats and high calories. 
And her needs will likely rise . 

My daughter grew 9 inches, went through full puberty, Doubled plus body weight. She needed 6000 cals ( very high fats) for years. 

She is now 19 and has been in recovery for years. She is thriving. 

Sooner or later your D is going to come home. 
You need to know how to do this. They do not come home all better. 

Please get these books ! They are the best. 
1) Lauren Mulheim “ When your teen has an eating disorder” 

2) Eva Musby “ Anorexia and other eating disorders”





Persistent, consistent vigilance!
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Foodsupport_AUS
We used both Olanzapine and SSRI for my daughter. I think there is no right answer to this, I am sure some can manage without it. My D was so suicidal for so that it didn't really feel as though there was a choice to try something. We used Fluoxetine which didn't help, Sertraline which produced side effects and then moved on to Venlafaxine which helped a lot. We are a long way down the track and she has now moved to Duloxetine, which she is also helping. I think the most important part is that you have clear ideas of what you are trying to achieve, and someone experienced is prescribing it.

I also agree with Mamabear - "weight restored" is a very relative term at this age. They need to continue to gain weight for years afterwards. There needs to be normal periods and an improvement in state before you can say she is at a place she needs to be. 
D diagnosed restrictive AN June 2010 age 13. Initially weight restored 2012. Relapse and continuously edging towards recovery. Treatment: multiple hospitalisations and individual and family therapy.
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ValentinaGermania
Ranchell01 wrote:
We are starting week 4 of overnight tube feeding. My d has been achieving a steady weight gain now of 0.5-1kg. The plan was to give a break to the anxiety, a symptom interruption, and to reintroduce food once weight restored in about 3-4 weeks.


It is really great that she gains constantly now but again, as the others said, there is no WR in 3-4 weeks and she will need to gain more after that. State, not weight. I really hope the team did not tell her she will be weight restorated in 3-4 weeks or even told her a number when she is.
Keep feeding. There is light at the end of the tunnel.
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Ranchell01
Thanks guys for sharing your experiences.
I have read Eva Musby, and her book and numerous links to different resources/ articles/ this forum, has been something that has helped me keep things together. 
This is not an easy journey and I’m under no illusions that she will come home better. It is very difficult to navigate as the path forward is not clear cut. There are a team of professionals managing her care on the one hand while I’m trying to inform myself as best I can to ensure that what is happening is best practice. 
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Mamaroo
Transitioning to food will be easier if she has to taste food while having the NG tube. At every meal give your d a 'tasting' plate with different food, so that she stays used to food. My d just had ensures, but had to taste whatever I gave the rest of the family to eat. She would put the food in her mouth, chew it and spit it out again. I did not supervise this, but just took the food away afterwards and gave her the ensure. It was much easier to reintroduce the food she had tasted, than the food she didn't. 

Her anxiety will go away when she no longer has fear around food, this means constant expose to food over a long period of time. In general it takes between 3 weeks and 8 months to form new habits and my d took 8 months of eating before being able to eat without incentives. We slowly introduced new foods, first as snacks and then one meal at a time. It takes a lot of time, but now all fear food is gone. You'll get there as well. Sending you lots of hugs 🤗🤗🤗🤗
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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mjkz
In some ways I think they are setting her up for a fall when she starts eating again.  She will need to face that anxiety at some point and start eating food.  Maybe you can talk to the team and ask that she be exposed to food again and that she starts eating at least one mouthful each meal and snack, more if she can.  Going entirely foodless and just tube feeding is what my daughter came home on and it was a nightmare.
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Ranchell01
I think you are right. She is now getting the same anxiety at being tube fed overnight. I have just taken her back to the ip unit as she is only out on day leave and it has taken them 2 hours to get her back on the ward from the reception. I have to ring the consultant in the morning to see if I can bring her back home tomorrow day. Everything seems to be moving her further away from home and from us. 
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ValentinaGermania
This was a big problem in IP here too. That is a kind of a life besides real life. And that feeds AN to be honest.
Best step to start recovery here was to get her slowly back into life. Normal life. With normal food.
Keep feeding. There is light at the end of the tunnel.
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