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flower_medicine

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Reply with quote  #1 
My 16 D with AN refuses solid food.We are waiting on a room at a treatment facility. In the mean time I dont know how best to get her to eat real food.She will take the ensure 3 times a day.Although this is new, I thought she was getting 3 a day and found she had gone into the fridge and replaced the majority of the bottles content with milk and water to fool us.She has not eaten solid food in over a month possibly 2. Please has anyone else gone through this? 
toothfairy

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Reply with quote  #2 
Hi, I would take her back to a different ER today. She could now be seriously medically unstable and also at risk of re-feeding syndrome.
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Son,DX with AN, (purging type) in 2015 ,had 4 months immediate inpatient,then FBT at home since. He is now in strong recovery,  and Living life to the full, like a "normal"[biggrin] teen. This is with thanks to ATDT. Hoping to get him into full recovery and remission one day at a time. Getting him to a much higher weight, and with a much higher calorie plan than his clinicians gave him as a target, was instrumental to getting him to the strong recovery that he is in now. Food is the medicine.
scaredmom

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Reply with quote  #3 
I agree with Toothfairy. Please get her to the hospital.
All the best.
Kali

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Reply with quote  #4 
Hi Flowermedicine,

There is a mom on the board, Mamaroo, whose daughter drank ensures for a long while and here is a post about her starting the switch back to food:

http://www.aroundthedinnertable.org/post/ensures-vs-food-8370786?pid=1294424519#gsc.tab=0

It seems as though moving forward, you will need to serve your daughter the ensure and make sure that you open each unopened bottle and hand them to her. You could try hiding them and keeping them out of the kitchen and bringing them to her when it is time for her to have them so she cannot tamper with them. 3 a day is too few, however. That is only 1050 calories a day. 

I hope the bed for your daughter will be ready very soon. Did they give you a time frame? The time before they go in is often when they are at their very sickest so just hang in there and make sure she is being monitored by an MD or the ER and try to get as much nourishment into her as you can until she goes in. 

Kali

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flower_medicine

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Reply with quote  #5 
Thank you for the advice... we are in the midst of an insurance gap . Two er visits later and we are back home.Durham has accepted her as a patient and said there should be a bed available by the weeks end. I’ll know more tomorrow. Unfortunately the last er visit was so counter productive she came out thinking and saying she is healthy. I honestly could have throat punched that darn Dr if jail was not a possibility. Sorry for the rant . I am having her monitored by the md every few days , although honestly they don’t seem very helpful at the moment either. I’m doing my best I feel but it’s not good enough. I am aware she is dying in front of me. This is hard and I know you all know as well. We are currently working on her second ensure for the day. A total of 6 hrs.
Kali

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Reply with quote  #6 
flower_medicine,

You are doing hero parenting in the face of an abysmal situation. Please don't feel you are not doing good enough. You have gotten arrangements in place for your daughter at the end of the week, so there is only a little more time until she is in a higher level of care. 

I also want to remind you that even though you are in the trenches right now, that things CAN get better. We have all been where you are and understand how it feels.

warmly,

Kali



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Mamaroo

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Reply with quote  #7 
Hi FlowerMedicine

Sorry to hear about your D, it sucks, I know [mad].
My d was in IP for 2 weeks to stabilise her heart and to gain some weight. Prior to IP she lived of 1 muffin 1 glass of water a day. When she got discharged we were given a meal plan and some ensures as backup. Although she tried to eat, she was never able to complete her meals and prefer to drink the ensures plus (300 kcal each). Gradually she would have more and more ensures until after 7 weeks at home she was having 6 a day (1800 kcal). My d was 10 at that stage, so your d might need more. I gave her the boxed ensures and also made up some with the powder ensures.

She gained on 1800 kcal, but when she started growing again she needed more. It was then decided to add food back. Initially a muesli bar. I took a couple to our appointments with our care coordinator and we all ate together, either in her office at the hospital or outside in the garden. She manage to finish the muesli bar in about a half an hours time. I noticed that the care coordinator paced herself so as not to finish before her (I off course finished within 5 minutes). My d could choose when she wanted the muesli bar (say breakfast or dinner and then we would stick to it). So everyday after that she ate one muesli bar a day in addition to her ensures. After a couple of weeks we added more snacks, some we ate with the care coordinator, others we included on our own. 

However, she was still required to taste her food. Everyday I would give her breakfast, lunch and dinner, the same the rest of the family would have. She would taste the food, by putting it in her mouth, chewing it and spitting it out. I didn't supervise that, since It didn't count anyway and was not pleasant to witness in any case. Although this step felt futile at the time, it was very important to maintain her connection with real food.

After a couple of months when we couldn't add any more snacks, it was clear that the ensures needed replacing. This was very hard. We started with lunch, it was decided that I would bring sandwiches for all to our weekly care coordinator meeting. She just stared at them, declaring she is vegan and would not eat the ham and cheese sandwich. I told my d that she is already eating cheese as part of her snacks, so my d then replied she would be vegetarian. It was decided for the sandwich to remove the ham. First step was for her to come out of hiding and just to take the sandwich out of the packet, then she was asked to take a bite. She took a minuscule bite, consisting of a couple of crumbs. We assured her that we were not adding at this stage, we were just replacing the ensure calories with sandwich calories.

We left it at that and decided to start again the following week. So then she was required to eat a quarter of a cheese (only) sandwich, while we ate our sandwiches. (This time we all ate slowly). The next day I required her to eat a quarter again and have the rest as an ensure. She protested, but I kept my ground, she needed to learn to eat outside of the hospital. I would take her lunch (sandwich & ensure) to school and she would sit in the car and have her lunch, while playing on my ipad. We did this for a week until the next appointment, when she ate half a sandwich. Then for the following week, she would have half a cheese sandwich every day at lunch (with the part ensure). This continued for a 3/4 sandwich and then a whole cheese sandwich. After that we didn't eat with our care coordinator anymore. Every week I would give her a different sandwich, ham & cheese, tuna etc. I would toast her sandwich, butter both slices of bread on both sides to get the maximum calories in. When she was comfortable with that we started replacing breakfast and then dinner. I had a boring and predictable menu every week so that she would know what to expect. This was placed on the fridge every week for her to see. This helped a lot in alleviating her anxiety.

I found that the food she tasted was much easier for her to eat again. I didn't give her fruit to taste, so it was much harder for me to get her to eat a banana, than meat. So even if your d is just living on ensures, keep on presenting a (small) plate of food for her to taste. 

Just a side note. While refeeding my d never wanted to eat with the rest of the family, she would get her meals either in her room or outside (depending on the weather) with me supervising.

Now my d would eat anything and can't believe she was just living of ensures.

There may be a long road ahead of you, but if you keep on presenting her meals calmly with the expectation she would eat them, she will eventually return to her normal eating habits. A stay IP can kick start this recovery.

Best of luck and sending you plenty of hugs!

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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 in March 2017. She is back to her old happy self and can eat anything put in front of her. Now working on intuitive eating.
flower_medicine

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Reply with quote  #8 
OK I see more and more what works for one doesn't work for another and so on.... I'm going to trust my gut more and start presenting her with more options.I like this approach.It's worth a shot!

tina72

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Reply with quote  #9 
In the IP they asked the kids who have a nasal tube or got ensure just to take one fork or spoon of the regular meal before they got the ensure.
Maybe that is worth a try? If you can avoid it, try not to make her spit it out again. The goal must be to swallow little bits again.
Tina72
Torie

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Reply with quote  #10 
Not sure if you already know this, but Ensure Plus has about 50% more calories than regular Ensure.  I think there's one with even more, but I can't remember what it is.

So sorry to hear about your encounter with the idiot doc.  OMG, SO FRUSTRATING and TERRIBLE that these menaces are still wreaking havoc like this.  Glad that higher level of care is on the horizon.

Hang in there.  It does get better. xx

-Torie

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