F.E.A.S.T's Around The Dinner Table forum

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pjdj Show full post »
pjdj
Kali, Thanks so much! This is an excellent read for everyone here. 

Update: The hospital called us yesterday saying they will monitor my D on a day by day basis. They are keeping us on edge. Meanwhile, we are trying to find other facilities but would prefer this place. I just hope my D would not scratch herself again. 
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EASL

Pjdj

keep up the hard work. I’m sure you’ve done this - but remove everything from her room that could be used - even bic pen caps. The less she can find may just provide the few seconds she needs to breathe vs hurt herself. 

I’ve been thinking of you. Keep giving us updates!

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pjdj
EASL wrote:

Pjdj

keep up the hard work. I’m sure you’ve done this - but remove everything from her room that could be used - even bic pen caps. The less she can find may just provide the few seconds she needs to breathe vs hurt herself. 

I’ve been thinking of you. Keep giving us updates!

Thank you so much! Every second I am on edge left they throw her out because they are not capable of handling her or she signs out AMA when she is medically fit (she did that just a few days ago, home for a week, lost 5 pounds, and admitted again). She is too headstrong, doesn't listen or maybe not rational at all. I am not ready yet to bring her home. 
She was a little compliant last time but not this time. I am preparing every day to steel myself. It is going to be a long one for us. 
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pjdj
Update:

My D is now taking Zyprexa 5mg and Lexapro 10 mg. She is calmer now. BUT she now says, gaining weight in the hospital is not the way to do it, I will lose all the weight I gain in the hospital when I come back home and then start gaining again at home because doing it 'our way' is the right way.  
How do I respond to this? 
If we call her out she might throw a fit and they might again threaten to send her to a psych ward. If we don't, we are encouraging this kind of behavior. 

Has anyone had experience with Zyprexa? How long are the patients usually on it?
Have anyone had symptoms come back when they have stopped?
 
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Enn

They all do say this. It is a way to get
you on their side. Right now it is ED. She is still in the hospital correct? When she come home there will be a transition so get ready for that.
There is not much to say to her, nothing and I mean nothing will appease her. I hope the team has told her that she just has to eat and that is a doctor’s order.
many have used the meds that your d is
on. You can search and take a look,there are many threads. They can help the patient by decreasing the ruminating thoughts and calm them a bit and help them sleep. Some have had some weight gain as a side effect
of the meds some have not. It may help with the OCD
too. 


Sending my best.

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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Enn

There is something I wish to make clear here. It is all ED talk. It is not your real d, don’t buy into it.
Your job is to tune out the noise that keeps your from  getting ahold of ED and getting her
better.
Focus on the weight gain only and not what she says .
If it helps you to think it is just baby babble, then let it wash over you. I am sure the team knows that her saying she will lose weight when she gets home  is expected and normal. They know most kids say this. It is just to create a divide between you all and gives ED
more power. I would tell them and have them talk to her about it and  have them tell her what the consequences will be, that is a return to the hospital over and over again. Some kids need to hear exactly what will happen if they do X or don’t do Y. If she continues to not eat, then care will have to be escalated. Will she need to go away from home and be sectioned? Telling her in no uncertain terms everything that will happen I think is fair. I feel you believe all she says is the truth and I am telling you it is not real or true and yes she will fight you so get prepared. Think of all her tricks and figure out how you will deal with them when home.
or post some here and we can brain storm to see what you may wish to try. 

The power differential has to go from ED to you the parents. Hard stuff. I had to change how I parented. I had to stand firm that nutrition etc had to come first and I had to develop a thick skin to her distress. Not easy not at all. It take time to learn and get your fighting gear together, but it is essential. I know how upsetting this is and how worried you are. She is safe.
Ask all the questions you have. I want you to feel that you can do this. It is not without a lot of work on your part but I think you can do this. 
big hug 🤗 

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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Foodsupport_AUS
Quote:
How do I respond to this?


There is no one way or right way to respond to your D's ED thoughts. It makes zero sense, and arguing with her ED logic will get you nowhere. So options are offering a hmmm, or just say something along the lines I can hear that the weight gain is making you distressed, you can distract her after acknowledging she is finding things hard. She may get more distressed, or she may not. 

My D was on olanzapine for several years. It did help her night time ruminations in particular. I don't think in our case it helped her to eat. She stopped it and switched to another atypical antipsychotic because of daytime sleepiness which is a side effect. It didn't particularly help with weight gain. 
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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EASL

Pjdj

i have no experience with the medication you mentioned. I have lots of experience with ED crazy talk. When I finally believed and trusted in the following ‘mantras’ I had the superpowers I needed to keep my daughter on the path towards heath. These might apply to you - they are things I used to repeat in my head at those moments of crazy ED words/emotions/harm etc:

- hmmm, my response to any ED talk. I heard her but I have nothing to say to ED. 

- when ED is talking my poor D is frightened, she’s been pushed into a corner behind this monster I must show the monster I am not afraid. If my D sees me being strong she might be able to peak out from behind the monster. 

- every meal (snack) matters - but if ED wins we just start on the next one

- It’s a long game, I had to change my perspective, I might not see any improvement for weeks/months/year - but I’m still going. 

- ED has the intellect of a toddler - I never would have let my 2 yr old set her bedtime so why would I let ED tell me what is/isn’t going to happen when she leaves hospital. 

stick to acknowledging her comment but not agreeing, remaining calm and committed to weight gain, say very little, and stick to the plan. You can do this - she will try to change course, you say ‘hmmm, well it’s the planned snack so this is what we do now’ or she says she’ll never forgive you and you think, ahh yes the ED toddler is trying to frighten me the way it’s frightened her, nope, food is good and everyone deserves it. Etc etc. 

Keep fighting! I’m sending lots of hugs and mental armour your way. You’re a terrific mom!

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pjdj
You all are my saviors!  I will keep updating.
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Enn
I have been thinking about 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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pjdj
All,

It now seems more and more that our only option would be to keep our D at home as she has only gained 2 pounds in 3 weeks in the hospital and is reluctant to stay there. She may sign out AMA again. Please please suggest how to feed her at home and how to break her exercise routine. 
I refed her last time this happened (two years ago) very effectively but this time she is not at all compliant. Someone just told me that let her decide as she doesn't like to take orders. Is that the right approach? I am so utterly lost. 
Also, are there any angels out there like meal support person or meal coach? 
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Enn
I will reply in more detail a bit later. But i feel the doctors have to have a frank discussion with her with you present and they tell her that you her parents are in charge and that they give you permission to make her stop exercise anyway you can. They need to tell her she just has to eat whatever you give and that is it. They need to empower you in front of her to shift the balance of power a bit . It did help us here, it really did. I hope that they can do that for you and that it helps you. Tell the team what you need from them. Don’t go home without a very detailed plan. 
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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Foodsupport_AUS
I am sorry that things are not going so well. It is of great concern that she has only gained 2lbs in 3 weeks, though of course better than nothing. The real question is why is there so little weight gain? Is this because she is not compliant inpatient, when they have numerous people for meal support, supervision to prevent exercise? My concern would be that if this is the case, things will be even worse at home. 
Clearly it would be an issue if she is signing herself out, but of course the other option is for you to set some very clear criteria for her to come back home, or make other requirements for adhering to care. It is always tough setting boundaries to push our loved ones towards treatment (corralling them in so they have no choice) but at the same time it sounds very much like this is what she needs right now. 
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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Kali

pjdj,

Sorry this is still so very difficult. Please check your email, I'm going to email you the name of a fbt therapist in nj and some other options for treatment. 

It seem like you are going in circles a little here.
You have her at home and it doesn't go well, and then you bring her to the hospital and she wants to leave. She HAS gained 2lbs. How much did she gain at home the last month you had her there? She is clearly uncooperative at home. Are you able to handle that? It didn't go well the last time she did that.

Quote:
Someone just told me that let her decide as she doesn't like to take orders. Is that the right approach? I am so utterly lost. 


Do you think that she will most likely decide to overexercise and not eat if she is given the chance? 

I'm still perplexed as to how a minor in NJ can sign themselves out of a hospital AMA when you are her legal parent and guardian until she is 18. All I know is that my signatures and oversight with my daughter were necessary until my d. turned 18 in NJ. That is only 3 years ago and I haven't heard that the law has been changed. I think that it is important to know your rights as a parent in this situation in case you need to be in control of her treatment if she will not comply. Maybe you should speak with a lawyer about it.

https://njaap.org/wp-content/uploads/2019/07/New-Jersey-AYAH-Confidentiality-Guide_Final.pdf

Please see page 6 of this document.

NEW JERSEY HEALTH CARE CONSENT LAWS The age of majority in New Jersey is 18; anyone younger than age 18 is legally a minor. Young adults age 18 or older are allowed to consent for their own health care; their right to consent may be limited if they are cognitively impaired and unable to give informed consent. For adolescents who are minors, the consent of a parent or another authorized adult is generally required. 

N.J. Stat. Ann. §§ 9:17B-1 and 9:17B-3

is the law that states that the age of majority in NJ is 18.

anyway I'm going to email you back channel with some names.

warmly,

Kali

 

 

Food=Love
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Enn
Hi there, 
It sounds like things are very stressful at the moment. 
As for exercise: Here are a few threads
https://www.aroundthedinnertable.org/post/exercise-10573468?pid=1311838794&highlight=exercise
https://www.aroundthedinnertable.org/post/exercise-compulsion-10492022?pid=1311271686&highlight=exercise
https://www.aroundthedinnertable.org/post/exercise-compulsion-advice-10510166?pid=1311413684&highlight=exercise
https://www.aroundthedinnertable.org/post/stopping-compulsive-exercise-10372977?pid=1310226888&highlight=exercise

What exercise does she actually do? We can help with ideas if we knew what it was exactly. If she is exercising in the bathroom, take the doors off. If she is doing it at night, sleep with her. If she is running outside, she cannot go outside, if she is doing sit ups, sit with her and distract. 
What exactly does she do at meals? what is she eating? Do you add calories to the food?
Sorry so many questions, but I feel if we knew some of the smaller details we could come up with more specific advice, not general ideas. 


We had standing all the time and my d was "rewarded" with soccer practice twice per week one hour only if she was able to comply 100% with sitting for two hours everyday and eating a compensatory snack on the days of her soccer practice. We took our d for long car rides. That may be something to try for your d. It may be hard to get her in the car, but you can use a false pretence. Also ensure she is in the back seat and the child locks are on and that there is a physically strong person in the back with her. We also did a canoe ride that took three hours of sitting in the canoe. 
You may just need to be "louder" in her head than ED. I know getting back on track is going to be harder as this is not the first time this has happened. I hope some of these tricks can help
Some have  given an extra snack for any extra exercise over and over again. If you can be persistent in that it can be helpful. One thing I realized, was that if I could outlast her ED ie being more stubborn, then my d "gave up" and ate or sat. We found as well that d would eat better if she had an audience like a friend or family member over. Is that a possibility?My d always wanted to appear normal so if the other girl had cake, she would too. If her grandparents were here, she ate what they ate. 

You also need to pump up the calories in her food. Does she have any incentives, like her phone?  Some have used that as motivation. Or is there video game she wants? So that when she completes so many days of good nutrition and less exercise (that is what YOU decide not her) then you can buy her a game? My older loves that Animal Crossing game. It is very cute. 
Or does she want music, or crafts anything? 
Can you substitute a prescribed short walk with you once per day? I know it is challenging to get control of exercise. You may need to sleep with her. I am not sure  if you are working at the moment, some have had to take leave to ensure 24 hr supervision.
Yes she will be stubborn you will need to be more stubborn. Keep posting. There are so many wise minds who have many ideas that you may find useful

 
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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pjdj
Enn wrote:
Hi there, 
It sounds like things are very stressful at the moment. 
As for exercise: Here are a few threads
https://www.aroundthedinnertable.org/post/exercise-10573468?pid=1311838794&highlight=exercise
https://www.aroundthedinnertable.org/post/exercise-compulsion-10492022?pid=1311271686&highlight=exercise
https://www.aroundthedinnertable.org/post/exercise-compulsion-advice-10510166?pid=1311413684&highlight=exercise
https://www.aroundthedinnertable.org/post/stopping-compulsive-exercise-10372977?pid=1310226888&highlight=exercise

What exercise does she actually do? We can help with ideas if we knew what it was exactly. If she is exercising in the bathroom, take the doors off. If she is doing it at night, sleep with her. If she is running outside, she cannot go outside, if she is doing sit ups, sit with her and distract. 
What exactly does she do at meals? what is she eating? Do you add calories to the food?
Sorry so many questions, but I feel if we knew some of the smaller details we could come up with more specific advice, not general ideas. 


We had standing all the time and my d was "rewarded" with soccer practice twice per week one hour only if she was able to comply 100% with sitting for two hours everyday and eating a compensatory snack on the days of her soccer practice. We took our d for long car rides. That may be something to try for your d. It may be hard to get her in the car, but you can use a false pretence. Also ensure she is in the back seat and the child locks are on and that there is a physically strong person in the back with her. We also did a canoe ride that took three hours of sitting in the canoe. 
You may just need to be "louder" in her head than ED. I know getting back on track is going to be harder as this is not the first time this has happened. I hope some of these tricks can help
Some have  given an extra snack for any extra exercise over and over again. If you can be persistent in that it can be helpful. One thing I realized, was that if I could outlast her ED ie being more stubborn, then my d "gave up" and ate or sat. We found as well that d would eat better if she had an audience like a friend or family member over. Is that a possibility?My d always wanted to appear normal so if the other girl had cake, she would too. If her grandparents were here, she ate what they ate. 

You also need to pump up the calories in her food. Does she have any incentives, like her phone?  Some have used that as motivation. Or is there video game she wants? So that when she completes so many days of good nutrition and less exercise (that is what YOU decide not her) then you can buy her a game? My older loves that Animal Crossing game. It is very cute. 
Or does she want music, or crafts anything? 
Can you substitute a prescribed short walk with you once per day? I know it is challenging to get control of exercise. You may need to sleep with her. I am not sure  if you are working at the moment, some have had to take leave to ensure 24 hr supervision.
Yes she will be stubborn you will need to be more stubborn. Keep posting. There are so many wise minds who have many ideas that you may find useful

She is probably coming home today unless they recommend sending her elsewhere directly. 
She cartwheels, does jumping jacks, goes up and down the steps many times, squats, etc. She has routines like picking one thing from the kitchen, coming and kneeling in the family room to place it on the coffee table, then repeating it many times with other things that she doesn't even need. She then goes back and places them in the kitchen. 
Yes, but she insists on me cooking in front of her and plates her own food. 
I do add but she burns it up with her exercise and limited food quantities. 

I will try to be as stubborn as her. Thank you so much! 
 
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Enn
I would suggest you physically get in her way. Tell her she needs to sit still and sit with her for ten minutes at a time to help her tolerate the distress and decrease the urge. Also I wonder how you feel about a new rule. She does not watch you while you cook. And ensure someone can distract her while you are cooking. H would take d to the basement to play ping pong while I cooked. Some cooked in the night or made a lot of extras and froze them. That way you don’t have to cook as much so she can’t see anything. I will find another popular post here about how some people do the cooking and supervision etc...

I know others have great ideas to add and they will likely pop in soon
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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Enn
This is a bit older now but there may be some things that click for you.
WE are all different. I am not posting this to say this will work but there are some things that I found helpful Like #19 be consistent.

This came from another member who got it from another parent.

Helpful Re-Feeding Tips From fellow - shared with author’s permission.

Many of us (not all) here follow (or have followed, and been successful with) FBT -Family Based Therapy - Here are some useful tips.

1. You prepare meals

2. Do not allow your child in the kitchen during meal prep

3. Your child should not go grocery shopping.

4. Toilet before meal and no toilet for at least an hour afterwards.

5. If purging is suspected, use an open door policy in the bathroom, or have them count or sing whilst in there. And no flushing

6. Do not negotiate - whatever you serve has to be eaten

7. Use whatever leverage you have - phone, Internet, tv - whatever they hold dear is to be removed if they refuse to eat, until they have eaten. If they're older and are not financially independent, this is your leverage

8. Separate the two - Your child is not the ED

9. Detach yourself from the situation during meals. Do not get drawn into emotional discussions. THIS IS NOT UP FOR NEGOTIATION

10. Remember that your child wants to recover - the ED is stopping them 

11. Your child needs your permission to eat. They need you to stand up to ED as they do not have the strength to do so themselves

12. 3 meals and 3 snacks per day (supervised) - do not deviate from this. Add time limits to the meals (as a guide/goal!). Ours (and the hospitals) was 30 mins for meals and 15 mins for snacks. In the early days this could extend A LOT. I made my Ds meal times

the same as they'd be at school so that when she transitioned back to full time it would be easier and less anxiety provoking.

13. High calories are needed throughout re-feeding with lots of full fat dairy. Some need as much as 6,000 cals with hyper metabolism, but the norm would be minimum 3500-4000 cals (for you to track not your child)

14. When they know you will not negotiate, I promise you will see the weight lifted from their shoulders... If only for very short periods

15. BE THE CAGE that keeps ED away from your child

16. When food is eaten be mum / dad again and have cuddles if they'll let you 

17. 24/7 supervision - I slept with my D for 4 months - this will protect against them purging through vomiting or exercise. Many patients will exercise alone at night for hours on end when nobody else is awake.

18. All sport may need to stop in the early stages, and for those who compulsively exercised this could be long term.

19. Be consistent, consistent consistent! 

20. Don't congratulate them after a meal or say 'well done' - just cheer inwardly! Likewise when (for girls) their period returns!

21. Learn from others. I found stories of other parents journey through recovery to be extremely helpful.

22. Recommended reading: 'Brave Girl Eating' by Harriet Brown

23. Be prepared for resistance, and lots of it! You will find your own way to manage this, but NEVER back down. Any compromise is a win for ED. Remember, you have to see the beast to slay beast!

24. Making decisions / choices is extremely difficult for them (painful to watch). This is true in areas outside of food too. If you've tried to hand over some control of a meal or snack and notice that they are struggling, that is an indication that it is

too soon and that you need to be making those decisions for them. 

25. Sometimes distraction helps during meal times. That can come in the form of games,TV, music. Whatever it is you control it and it only continues with eating.

26. Make sure all weighing scales are removed from the house.

27. Lean on us - you have 24/7 support here as We are International .

28. In some cases FBT isn't an option, generally if there are co-morbid’s such as ASD and BPD (Borderline Personality Disorder) . It may just be that FBT needs to be tweaked, or that a different approach is needed. There are many here who have found ways to

work around those co-morbids.

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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pjdj
UPDATE!

Thank you, Enn for the pointers. I really appreciate them. I couldn't bring myself to respond as we had to call paramedics one night with a very low heart rate, around 32 or so. Then next day take her to ER because she was bumping her head when told not to exercise. 
Two nights later, on July 13th we brought her to CHOP where her heart rate was 29 the first night. 

We are super scared. We can't keep doing this. Now we are talking Denver, Colorado  ERC. Apparently they have an excellent reputation. Does anyone have any experience with them?

She still thinks all this is just her heart and then she can go home. The first challenge will be how to break this to her and then how to take her all the way from NJ. We are also talking to a company that sends a person with the patient and parents. This is truly a nightmare! 

A huge thanks to Kali for suggesting a great therapist who told D exactly what needs to be done, suggested CHOP to us, and kept motivating. 

A very frustrated mom!
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Enn

So sorry for all that is going on right now, and glad you have a plan moving forward.
No need to apologize for not replying we truly understand that the day to day ED issues need your full attention and we are here when you need or want.
🌺

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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Foodsupport_AUS
CHOP is an excellent place for your D to land, and I am sure they will keep her safe. ERC in Denver also has a good reputation ( I am in Australia) for ongoing care. I would hope that CHOP will work with you to let your D know where and what needs to happen. Thinking of you and take some time to care for yourself, I know how hard that is - have a look at the self care thread. 
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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DKtoUSA

Hello from PA. ERC Denver is probably the best RTC in the country. When AN took over my daughter, we were living in Denmark. The treatment there is punitive, barbaric, and outdated. Worse than that though, are the laws that allow a mentally ill 15 year old to make life-threatening decisions - like refusing all food and nourishment for six full days while in the hospital.

In Denmark, I immersed myself into every parent group for eating disorders on Facebook and did a lot of reading and asked many questions about where we could go to save our daughter. It quickly became apparent that we needed to get her to ERC Denver. We simply did not have time to waste at any place other than the best of the best. 

She spent 2 weeks at Children’s National in DC for stabilization prior to admission to ERC Denver. We were at ERC for 80 days as inpatient/residential and five weeks for PHP. She went from 85 lbs to 142 as of yesterday. She is doing remarkably well, and we have ERC to thank for that. I would recommend ERC Denver to anyone who can possibly get there -  we crossed the ocean and left our home and my husband’s family to do so, and I would do it again in a heartbeat.

 

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pjdj
DKtoUSA wrote:

Hello from PA. ERC Denver is probably the best RTC in the country. When AN took over my daughter, we were living in Denmark. The treatment there is punitive, barbaric, and outdated. Worse than that though, are the laws that allow a mentally ill 15 year old to make life-threatening decisions - like refusing all food and nourishment for six full days while in the hospital.

In Denmark, I immersed myself into every parent group for eating disorders on Facebook and did a lot of reading and asked many questions about where we could go to save our daughter. It quickly became apparent that we needed to get her to ERC Denver. We simply did not have time to waste at any place other than the best of the best. 

She spent 2 weeks at Children’s National in DC for stabilization prior to admission to ERC Denver. We were at ERC for 80 days as inpatient/residential and five weeks for PHP. She went from 85 lbs to 142 as of yesterday. She is doing remarkably well, and we have ERC to thank for that. I would recommend ERC Denver to anyone who can possibly get there -  we crossed the ocean and left our home and my husband’s family to do so, and I would do it again in a heartbeat.

 

Thanks so much for the positive feedback about ERC Denver. I am curious to know how did you work out the insurance? We are trying for a single case agreement with our insurance company. 
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