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mjkz

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Reply with quote  #51 
How are you doing?  Sending lots of good thoughts and prayers your way.
HateEDwithApassion

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Reply with quote  #52 
Mjkz and all of you - thank you for checking in. Stopped here yesterday, but couldn't find the energy to post. 

Update: The good...

-D is still in PHP - rescinded her AMA on Monday after a full-out rage, cops called after she got angry at attending psych doctor who put her back on restrictive level after she came back from hospital. Told him to F - off. Told the staff to F- off. I couldn't believe it. The next day, same doctor met with her, she apologized, said she would rescind the 72, start meds again and stay. She called me and was herself. Quiet, sweet. Reasonable. Said she loved me. It was nice to hear my real D again for a few minutes. 

The bad... (and good I guess)...

Team met with her yesterday - laid down the law. That happens again, instant discharge. They want to transfer her to a residential/PHP dual diagnosis/DBT program to address BPD traits that are worsening as she can't use her regular negative coping - eating behaviors, self-harm, pot etc. used in the past to numb emotions. Black or white thinking is severe - not better. Splitting is worse - not better. Hopelessness is worse - not better. Mood swings - worse.

The belief is the BPD traits preceded the eating disorder, and the eating disorder thinking, while kicked off genetically due to negative energy balance, is useful to her in muting the BPD, making it even harder to fight. I agree with that assessment. We learned this weekend at a family gathering that my h's grandma, great aunt, and great grandma were all institutionalized for weeks and even months for mental health issues back in the day, so the genetics is hard to deny. 

So, she didn't fly home - praise God. And we'll know more later this week on timetables, next steps, etc. I am meeting with our DBT parent coach today to discuss help in setting boundaries, guidance in using validation when we get stuck in circular conversations, and setting consequences for noncompliance in case she comes home and does IOP DBT instead. I'm torn on what is best - residential or home - because our in-town DBT program is actually excellent- fully adherent and I believe they can help her if she commits to really working at it, which she hasn't in the past. 

How are you all doing? [smile]


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17 yo D. Diagnosed in July 2013. W/R in Sept. 2013 and has remained so. Roller coaster on and off since, mainly with ED under control but co-morbid depression and other negative coping mechanisms making our life hell. Trusting in God for daily strength and wisdom.
Francie

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Reply with quote  #53 
Hi HateED, I just read through this post. What a harrowing experience. Just wishing you good thoughts. XO




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Francie

deenl

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Reply with quote  #54 
Wow, that is as good a result as you can expect. I wonder how much you guys holding strong impacted the descision she ultimately made.

Warm wishes,

D

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2015 12yo son restricting but no body image issues, no fat phobia; lost weight IP! Oct 2015 home, stable but no progress. Medical hosp to kick start recovery Feb 2016. Slowly and cautiously gaining weight at home and seeing signs of our real kid.

May 2017 Hovering around WR. Mood great, mostly. Building up hour by hour at school after 18 months at home. Summer 2017 Happy, first trip away in years, tons of variety in food, stepping back into social life. Sept 2017, back to school full time for the first time in 2 years. Happy and relaxed, just usual non ED hassles. 

  • Swedish proverb: Love me when I least deserve it because that's when I need it most.
  • We are what we repeatedly do. Excellence Recovery, then, is not an act but a habit. Aristotle.
  • If the plan doesn't work, change the plan but never the goal. (but don't give up on the plan too soon, maybe it just needs a tweak or a bit more time and determination [wink] )
  • We cannot control the wind but we can direct the sail.
eternalhope

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Reply with quote  #55 
I was relieved to read your post. These are steps in the right direction. I know our situations are different, but I can totally empahize. It’s so tough when it’s hard to separate when it’s ED from BPD. My d has ODD, which I am staring to believe is another word for BPD, and it makes dealing with the AN worse.
Torie

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Reply with quote  #56 
HEwaP: 1
ED: 0

Great work!!!  

You said, "I'm torn on what is best - residential or home - because our in-town DBT program is actually excellent- fully adherent and I believe they can help her if she commits to really working at it, which she hasn't in the past."

From my vantage point, it doesn't seem likely that DBT would be very effective at this low weight.  Your real d would probably benefit from DBT skills, but it sounds like she is mostly not the one calling the shots, and the ED-side of her brain would be unlikely to cooperate.  My guess is that residential would be a true blessing in the effort to get her ready for DBT.

"She called me and was herself. Quiet, sweet. Reasonable. Said she loved me."

Keep that thought close to your heart.  That's your real d talking.  She's in there.  xx

-Torie



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

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Reply with quote  #57 
Wow.  That's really awesome!!!  I'm glad they are laying down the law and guiding her decisions as much as they can.

Residential VS home-she doesn't sound any more stable BPD wise than she was when she went.  She couldn't do it at home due to her BPD and she will have plenty of time to do the outpatient program after residential.  I know I've said in the past that bringing my daughter home was what did it for her but she was way more stable and willing to work on all things with me when I did it.  If my daughter had been where your daughter is now, I'd have opted for residential to keep her safe while she learns to deal with the BPD traits as well as the ED urges.  I think if you were dealing with just ED, then it would be different but speaking frankly here I don't see that anything else will be different if she comes home.  I think she needs more than you (her family) can provide and if ERC is looking into a dual diagnosis residential program, they think she needs more than can be provided on an outpatient basis too.  Just my opinion and remember it is worth exactly what you paid for it [wink]
eternalhope

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Reply with quote  #58 
With a dual diagnosis, would she remain at ERC, or be referred to another residential program?
HateEDwithApassion

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Reply with quote  #59 
Hi all,

Insurance today announced that my D's last day there is probably Thursday. Getting a transfer to the other program - which is at a higher level of care - is probably not going to happen. We don't have the money to pay $1500/day out of pocket, so plan B is she is likely coming home. At a better weight, but highly unstable.

Yes mjkz - she probably won't be any different when she comes home. However, I wonder if I'm different. Before I was terrified to get her upset, worried about her living elsewhere or spiraling down. I was a rescuer in the dysfunctional triangle. I don't feel like rescuing her now. I like the peacefulness of my home with her not living here. I like that we aren't stressed leaving her alone or saying the wrong thing or telling her she can't use the car or the absense of being cussed at. I needed this respite. I needed this contrast to really see the insanity of how we were living with her. I don't want to go back to that. 

Anyway, we'll see what the next day brings. The highs and lows are crazy.



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17 yo D. Diagnosed in July 2013. W/R in Sept. 2013 and has remained so. Roller coaster on and off since, mainly with ED under control but co-morbid depression and other negative coping mechanisms making our life hell. Trusting in God for daily strength and wisdom.
eternalhope

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Reply with quote  #60 
I’m guessing they’ve already done a peer to peer review? We had insurance deny and then approve upon a peer to pee review. I’m so sorry it’s so difficult, but I’m glad you’re in a good place. God bless you all.
I’ll continue to pray. You’re loving parents and are giving it your all.
hopefulmama

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Reply with quote  #61 
I’m so glad she stayed. We were lucky enough to work with one of the leading DBT experts in the country, Kay Watt. She has trained directly with Marsha Linehan for years. I had a contact whose daughter had ED and BPD and was looking at options for her daughter. I emailed Kay to ask her opinion. I have copied below her comments as they might be helpful to you. It sounds like it is actually what you are putting together for your d.

The issue of ED and DBT is a complicated one. At Edcasa we were committed to doing adherent DBT. This was also true of the Cleveland ED Center. In 2013/14 several large treatment centers purchased the more boutique centers throughout the country. When this happened there was a lot of standardization of treatment throughout these individual centers.
This is all to say that I don't know of an ED center currently that does adherent DBT which is what a person with borderline needs. The centers now may have DBT groups but they are not "doing" DBT if that makes sense.


The research for effectiveness in DBT for borderline shows highest recovery in persons who do standard once a week, 2 hour DBT group plus individual therapy with an adhe. Linehan 3 rounds of the 24 week group.

So one idea is to get her in a place with a good ED IOP or PHP that also has great D BT therapists nearby and add that to the ED treatment.

Hot spots for the best are Seattle, Portland, Raleigh Durham, Atlanta.

Another thought is assessing to see if she is truly borderline or if she is over controlled. There is a new kind of DBT called Radically Open DBT that is specifically for folks in that category.

You can read some about it on our website sanantoniodbtcbt.com.

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Enjoying my 21 year-old daughter's achievement of active recovery that was made possible by the resources and education I found on this forum.

Don't give up hope!
mjkz

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Reply with quote  #62 
I hate it when insurance makes up your mind for you.  Is ERC willing to fight to get her to the dual-diagnosis program?

I think our kids go through recovery as well as we do during this process.  Getting to the point where you are not afraid of upsetting your kid is a good thing especially when it hampers your life so much so while she might be the same, you aren't and that's good.  Both sides have to shift and if one side shifts, the other one either shifts or loses step in the dance.  I hope things go well for you all.
Francie

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Reply with quote  #63 
Hi HateED, I am sorry your d will be removed from care prematurely due to the insurance company. And I am glad you have a newfound strength. It shows in your postings of late. I will hope that insurance doesn't do the dumb thing they are threatening. And I will pray for you, your d, and your family. Best wishes XO
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Torie

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Reply with quote  #64 
Quote:
Originally Posted by HateEDwithApassion
Insurance today announced that my D's last day there is probably Thursday. Getting a transfer to the other program - which is at a higher level of care - is probably not going to happen. 


Ugh.  Would you like some help brainstorming ways to help the insurance company understand what they should be doing?  Sometimes it's hard to tell what kind of reply would be appropriate, and when it would be beating a dead horse.  Since I'm prone to beating dead horses, that's a particular danger when corresponding with me.

Anyway, it's good that you have had this break and the chance to reconsider your response to ED.  I bet it was sobering for your d to realize that you and your h really meant it when you said ED wasn't welcome in your home.  Please keep us posted.  xx

-Torie

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HateEDwithApassion

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Reply with quote  #65 
You guys are the best! I hope you never need my support in this way because your kids are doing great forever, but I will be very honored to be there for you whenever you need it. So thank you, first of all, for continuing to walk with me in this.

Insurance review is tomorrow. D's psychiatrist is fighting to get her time extended because she thinks she needs it - uh, yea -  and she's apparently known for being skilled at securing extra days. In any case, if discharge is authorized, they think insurance will give a few days to set up transition. We have a family session tomorrow. Still all up in the air - I'm trying to enjoy the peace in our family and home for a little while longer.

My D is mentally checked out of treatment anyway. After admitting to using behaviors and going back to the restrictive wing for what she thought was a few days which became a week, she's been angry and defiant. I think she decided to fight against her team instead of her disease, and in typical borderline fashion, sees them as the enemy. I don't think it's going to change at this point, so staying won't have a significant effect other than giving us a peaceful home.

For that reason, I doubt another treatment center will effective. So I'm resigned to her coming home and hopefully doing the fully adherent adult DBT program, which is Linehan-certified, with her current counselor.

I'm going to be buying a case or two of wine - for me - because I'll probably need it. [smile]

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17 yo D. Diagnosed in July 2013. W/R in Sept. 2013 and has remained so. Roller coaster on and off since, mainly with ED under control but co-morbid depression and other negative coping mechanisms making our life hell. Trusting in God for daily strength and wisdom.
mjkz

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Reply with quote  #66 
Quote:
For that reason, I doubt another treatment center will effective. So I'm resigned to her coming home and hopefully doing the fully adherent adult DBT program, which is Linehan-certified, with her current counselor.


Yes but the big question is can you keep her safe at home.  When my daughter was like that, I watched her 24/7 and had a nurse that came in at night to watch her to keep her safe.  She was angry, impulsive, and wanted to get back at everyone by hurting herself.  Even with that level of observation, she still was admitted two or three times for very short stays on a general psych unit to keep her safe when she would bolt or try to give us the slip.  I didn't really have any other options other than to keep her safe at home as much as I could.  She had pretty much burned bridges all over the place so residential was not an option and the general psych unit stays while keeping her safe often meant tube feeding while inpatient because she would quit eating as a way to hurt herself.  If you don't think you can keep her safe at home, now is the time to let ERC know that so that they can fight to get her to the dual-diagnosis program.  Once she comes home, you are on your own fighting insurance if she needs to go inpatient again.  Let ERC do that fight for you.

Also given that when you really put your foot down and told her she couldn't come home until finishing treatment, she actually did stay.  She might be mentally checked out of there now but don't let that color your view of any future program.  Any program that works with BPD is well aware of what patients do and are prepared to deal with that.
Francie

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Reply with quote  #67 
Thinking of you, HateED. I hope all goes your way today.


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HateEDwithApassion

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Reply with quote  #68 
Hi all,

D will be discharged on Tuesday.  She's not fully participating with the program, insurance has been pushing back hard, and the team has tried and tried to extend her time, make headway with her, and nothing is getting through. 

After having a candid call with her team, we have learned her behaviors are more erratic than we thought. She tells the doctors they don't know anything. She wrote in one of their birthday cards - Sorry for being such a shit. She isn't going to group therapy consistently - they find her in the community room instead. She's lying about taking her meds because they test, and there's none in her system. They did another sweep of the apartments to see if she was hoarding them for an OD. Psych doctor said she sees bipolar and BPD traits, but wouldn't want to label her as such right now without a full evaluation. She also shows a concerning lack of remorse for chaos she causes. I believe, after hearing her on the phone yesterday, that she is significantly mentally ill along with the AN. 

We have a family session on Monday, so we'll see what she's agreed to for her after-care plan. She's a moving target and says one thing, then another. She's told us she's not doing full DBT, and we've said that's a condition for living back at home.  We are working on the full list of boundaries this weekend. It just sucks with her coming back the day before Thanksgiving. How would you handle that?

That's all for now. I'm pissed at her for wasting this opportunity to get really strong help. I can't fault the program at all - there's not much you can do with someone who refuses to trust or to find a little sliver of willingness to work on recovery.  I won't be the rescuer anymore. It hasn't worked and I'm tired of doing it.  [smile]



__________________
17 yo D. Diagnosed in July 2013. W/R in Sept. 2013 and has remained so. Roller coaster on and off since, mainly with ED under control but co-morbid depression and other negative coping mechanisms making our life hell. Trusting in God for daily strength and wisdom.
deenl

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Reply with quote  #69 
Hi HateED (man, I totally hate it) I

I have no wise insight but just wanted to send you some virtual support as you work your way through this difficult period.

Hugs and warm wishes,

D

__________________
2015 12yo son restricting but no body image issues, no fat phobia; lost weight IP! Oct 2015 home, stable but no progress. Medical hosp to kick start recovery Feb 2016. Slowly and cautiously gaining weight at home and seeing signs of our real kid.

May 2017 Hovering around WR. Mood great, mostly. Building up hour by hour at school after 18 months at home. Summer 2017 Happy, first trip away in years, tons of variety in food, stepping back into social life. Sept 2017, back to school full time for the first time in 2 years. Happy and relaxed, just usual non ED hassles. 

  • Swedish proverb: Love me when I least deserve it because that's when I need it most.
  • We are what we repeatedly do. Excellence Recovery, then, is not an act but a habit. Aristotle.
  • If the plan doesn't work, change the plan but never the goal. (but don't give up on the plan too soon, maybe it just needs a tweak or a bit more time and determination [wink] )
  • We cannot control the wind but we can direct the sail.
Francie

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Reply with quote  #70 
Hi HateED, Oh, this all really stinks, it really does. You have a few days to work out a plan and get yourself ready for her discharge. I wish for you all the strength, compassion and wisdom you can manage. Thanksgiving? It's just another day during which I hope you will experience grace and gratitude. Thinking of you. Praying for you, your d and family. XO
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mjkz

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Reply with quote  #71 
Wow.  At least with my daughter they actually knew she was not doing anything.  They were extremely upfront with me about her all erratic behavior.  It is really kind of scary that they didn't know she wasn't taking her meds.

I know taking her meds has a condition of living at home so if they can't even get her meds into her, what chance do you have?  My daughter did the same and I told her she couldn't come home until she was on them.  She spent a couple of extra days at ERC getting back on her meds because I wouldn't accept her home if she wasn't on them. 

I honestly don't know what to say.  If it was my daughter, there is no way I'd be taking her home given her erratic behavior, inability to comply with treatment while in an inpatient hospital setting, her inability to see or care about the chaos she is causing, and the fact that she is telling you upfront she is not going to cooperate.  I know my daughter was at least willing to go back on meds and work with her outpatient team so I did take her home but I let ERC know that they would need to find placement for her if she wouldn't go back on her meds and agree to fully comply with the contract I presented as conditions of returning home.  If you are not willing to take her home, now is the time to say it because ERC has places they can access that you can't and once she comes home, you are on your own.

I'm so sorry HateED.  I remember well feeling so defeated and discouraged with my own daughter when she was in a similar place.  Nothing I said or did really seem to make a difference.  She only complied when it was made clear that she was not coming home unless she did.  Maybe if you make the meds a condition of coming home and she acts like she is willing, you could get a few more days at ERC for her to get back on them (and enjoy Thanksgiving).  It tears your heart out to watch your own kid self destructing but I knew I couldn't live like we had prior to her going to treatment.  It doesn't sound like having her at ERC was really any different than having her at home in so many ways.

What is ERC recommending?  Are they willing to fight to get her to a dual diagnosis program?
eternalhope

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Reply with quote  #72 
HateED, I’m so sorry. You and your family have been through so much. I really hope she will consider getting back on her meds. Such a terrible disease. Take care, and I’ll keep praying for you.
HateEDwithApassion

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Reply with quote  #73 
We have a family session on Monday. I've written up our contract for what we need for her to live at home. She is now saying she is not ready to come home - well, too late. Insurance has had it with the erratic behaviors and non-participation. ERC is pushing hard for dual diagnosis - it's my D who is refusing to go. She says she's coming home, going back to her outpatient team, and moving out.

mjkz - and everyone -  your responses are really what I need to hear. I am not good with enforcing boundaries. I worry she'll be homeless, on the streets with some awful person taking her in. I parent out of that fear vs. laying down the boundaries with my H and then letting her decide her own road, knowing it may be bad, but it's definitely going to be bad here. 

Thanks for your candor and sharing your D's journey. It sounds similar. I guess the good news is that my H is fed up with how she's treating us, and is more likely to stand tough and hold the line on our requirements. I need some therapy for myself!


__________________
17 yo D. Diagnosed in July 2013. W/R in Sept. 2013 and has remained so. Roller coaster on and off since, mainly with ED under control but co-morbid depression and other negative coping mechanisms making our life hell. Trusting in God for daily strength and wisdom.
mjkz

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Reply with quote  #74 
HateED, I think you are doing the best thing you can.  Give her the contract and let her choose her own way.  You parent from a different perspective than your husband and it sounds like you soften his approach and he gives you resolve when you need it most.  Hopefully you've seen from this hospital stay that when you do stand your ground, the outcome is better.

As hard as it is to let her make a bad choice, she doesn't realize it's a bad choice unless she is allowed to make it and see the consequences.  Everyone is like that to some degree.  It is real only when it happens to you.  You can tell her how bad the decision is she is making but if you continue to shield her, you are not letting her learn how bad and struggle to make better ones.  I had a very good therapist when I was going through all of this who pointed this stuff out to me.  My daughter never got how bad her decisions were until she was allowed to fall flat on her face, then pick herself up and try to learn from it.

With the contract, you have it all spelled out so you don't have to think about it.  It takes the emotional part down several notches on your side anyway.  If she doesn't comply, you have to be willing to enforce the contract or she will never trust anything that you say.  If you don't follow through, you've lost any kind of leverage you had which is a sure way to a bad ending.

Perhaps if she is really not ready to come home, you can encourage her to let ERC know that and they can get into the dual diagnosis program with a direct admit from one place to another.  Quite honestly I'm really angry on your behalf at ERC.  They have had her for how long yet aren't willing to diagnose her with anything?  If she truly has bipolar traits and is off meds, nothing will get any better.  She will bounce from one bad reaction to another.  I think by holding off and letting her stop taking her meds, they have really set this up in a bad way.

Good luck tomorrow.
HateEDwithApassion

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Reply with quote  #75 
Final question before tomorrow - and I swear I'm done beating this dead horse. [smile]

I'm preparing, like DBT, for the conversation and worst case scenario. I believe we'll set our our rules. She will say what she's willing to do recovery-wise, which will not be the rules. She will demand her money and will come pick up her stuff and stay elsewhere. We will hold our boundaries to living here, but do we give her any of her money to stay in a hotel or sublet an apartment? Or do we hold her money from her and she literally comes home with suitcases and nowhere to go? Since she's not mentally well, I think she'll dig in and chose that latter option, which is scary for us. I'm not sure my H is even willing to let that happen.

Yes, I am going to leave a message for her family therapist today about pushing for dual diagnosis or having some other options ready for her on where to go since I anticipate she will not follow our rules.

__________________
17 yo D. Diagnosed in July 2013. W/R in Sept. 2013 and has remained so. Roller coaster on and off since, mainly with ED under control but co-morbid depression and other negative coping mechanisms making our life hell. Trusting in God for daily strength and wisdom.
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