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hope4d

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Posts: 4
Reply with quote  #1 
Hello all. I would first like to thank everyone on this forum for sharing what I am sure are your most vulnerable experiences, emotions, and moments in your lives. I have been reading this forum for a long time, taking everyone's experiences and advice in and piecing it together with my own journey. Although I have never posted, I feel like you are all old friends. I admire the strength and resilience you pass on and I thank each and everyone of you for that because it is your strength that has helped me. We talk of our children being brave, but braveness doesn't mean we are really really scared. Which, I will admit, for some reason, I have been afraid to post. Maybe it's because part of me wants to remain in denial. I do not know.
But, the time has come that I can use some advice, support and direction for me.

Background: 23 yo daughter has been battling AN restricting since 17. In and out of treatment. We have been to renfrew (big mistake), monte nido, veritas and the one week at UCSD. I began family based treatment and support with her as a young adult and she has made great strides in letting me in and providing support. The week long program was pivotal in that regard. She had yet to ever be weight restored. She was close to it, but never made it over the finish line. Whenever she approached, restricting behaviors returned and her weight fell off quickly!
Fell down rabbit hole quickly this past summer and the beast took on a new persona-purging. She had purged in the past, but they were more isolated instances. She has became a full blown purger. Her "binges" are not binges. She would purge no matter what she ate or drank. Drinking fluids is actually more of a challenge than food.
Veritas- I had such great hopes that they would help break the purging cycle. Much to my dismay, after two weeks, they sent her out on passes by herself and the purging returned. I asked them not to allow her on passes alone, but because she was not reporting the purging to them, they did not heed my request. Meanwhile, she had an ng tube the first two weeks because she could not drink her fluids and was dehydrated.
however- the good news- veritas did get her weight restored! She has been weight restored for 3 months now, but I do not know what to do about the purging.

She is beginning to purge a lot again (several times a day). She was purging up to 14 times a day!
I am thinking she needs a higher level of care with strict guidance for purging. I have tried to do it at home, but the beast wiggles its way and creates cracks and like others have reported, purges when you blink.
I feel she is at the finish line, but can't cross and wil not cross until this behavior is eradicated. I have taken all of the suggestions about purging and have tried them all. But, she is 23. She goes to community college two nights a week and purges there. She holds small babysitting jobs and purges there. She goes to dunkin for coffee and purges there. She goes to get gas, pulls over and purges on the side of the road. I took a leave from work to stay with her all the time, but honestly, she still found ways and places to purge. I could do it again, but I'm not sure it will work.

So this is where I am at. Can anyone please help me navigate this?

I think I'd like to send her to a residential program to help break this cycle then take a leave after discharge to continue support. Problem is, I don't know which one would do that. My hopes were veritas, and yes, they served a pivotal role in her recovery with weight restoration, but they did not address the purging behavior. Or would it be best to try to tackle it at home??
Thank you for your help with this. I so appreciate everyone on this board.
tina72

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Reply with quote  #2 
Hi,
welcome here and good that you dared to post now! Purging is a common problem. Thank god we did not have it up to now but a lot of other parents will soon come around to give you some ideas. The big thing is to supervise them 24/7 to stop it. If she is doing that that perfect I think you cannot do that at home. I hope someone will give you ideas where to send her for IP.
Is she financially dependent and living at home? Do you think you have any leverages you can use?
Tina72
byebyeED

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Posts: 19
Reply with quote  #3 
My daughter was diagnosed with AN at age 14, and she is currently 18 1/2 and doing well.  We struggled with purging for a very long time.  It seemed to be the first symptom that would come back when things would head south again.  We finally figured out that what we thought was weight restored and what actually WAS weight restored were two totally different things. 

Since your daughter has been living with this for six years now, has her target weight been raised, or is it still the original target weight from when she was 17?  For my daughter, we learned that it was a moving target, and her actual weight restored weight ended up being about 40 lb higher than what was set during her first IP stay.  I remember when she was in her 3rd IP residential treatment center and they finally gave me what her number needed to be (and they were finally correct!).  It scared the blue blazes out of me.  I didn't think there was any way we would possibly be able to get her to that weight.  At the time, it was about 50 lb. higher than her current weight.  Well, not only did we do it, she actually went about 5 lb higher than that naturally, and as she did, her behaviors lessened and eventually stopped.

My daughter spent 2 1/2 months at McCallum Place in St Louis, MO in residential, and then she did IOP for five weeks there.  They have apartments available for the parents to stay in with their children while doing IOP.  They are HUGE proponents of FBT, and were able to hook us up with a therapist who guided us through transitioning home.  This made a world of difference for us.  We even did Skype sessions with her for about six months, since she is the closest FBT therapist to us (we live four hours away).  While she was at McCallum, they were awesome about stopping the purging.  She simply didn't have the opportunity to do so while there.  She was watched like a hawk, and spent the first few weeks "arm's reach" meaning that she didn't ever even go to the restroom alone.  With her, the longer she went between purging, the easier it got.  And like your daughter, mine would do it after everything she ate or drank before she went there.  After she came home, her ED thought it was going to start purging again, but we quickly plugged those holes in her safety net and stopped it right away.  By that time, I was more confident in my own abilities and able to help her better.

(((Hugs))) to you, Hope4d.  Purging is one of the hardest things to stop, but it can be done!
hope4d

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Posts: 4
Reply with quote  #4 
Thank you Tina
I do have financial leverage and after following advice found her, have used it. I am struggling helping her break the cycle. I'm just not sure if I should try the 24/7 again or jumpstart her in ip. She seemed to always find a way to purge even with me. She even told me she is trying to be a silent purger and not use her hand-which is always a giveaway. And, she tells me "it feels good!" That worries me so much. She has come so far and I'm so afraid she will spiral back out of control.
hope4d

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Posts: 4
Reply with quote  #5 
ByebyeED,
When she left Veritas, she was what they considered restored. When she got home, I stayed with her and watched her 24/7 and she actually gained about 8 more pounds. I cooked everything for her and added all of those hidden calories. I then noticed a change in her attitude and personality-another dead give away-and sure enough, she dropped a few pounds closer to her original target weight. It was amazing to see how those few less pounds allowed ED to creep back in. She did so much better at that overshoot weight.
Thank you for sharing about McCallum place. I'm going to look into it. I think part of it is I'm tired and burnt out and I need help. I'm afraid I'm going to fail her and I can't fail her. It is not an option.
Hugs to all of you!!!
Mamaroo

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Posts: 272
Reply with quote  #6 
Hi Hope4d, sorry to find your way here. It is terrible to see our child suffer so much. My d didn't purge, but I have read that medication, such as SSRI antidepressants (Fluoxetine) can be of great help. Is she taking any medication?

Sending you lots of best wishes!

__________________
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.
Torie

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Posts: 4,857
Reply with quote  #7 
Quote:
Originally Posted by hope4d
And, she tells me "it feels good!" 


Yes, well, apparently that is normal according to what I have read.  You know when you have a stomach bug and you feel bad and then worse and then worse still until you finally vomit and then feel so much better?  That's just how our brains and bodies work (whether we have a stomach bug or not) and part of the reason it is so so hard to stop.  

In your shoes, I would call McCallum place (and / or whatever other places people have recommended) and ask their opinion.  You sound exhausted, and understandably so.  

Your d is lucky to have you on her side.  Please feel free to ask all the questions you like.  xx

-Torie



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

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Posts: 62
Reply with quote  #8 
Hi hope4d

I just wanted to let you know that you are not alone and I am glad that you have decided to post. My D is 17 and her purging is out of control. She can now purge without holding her stomach (she used to have to push down on it) and she is silent whilst she is doing it. She can purge whilst sitting on the toilet and holding a conversation. We are waiting for an IP bed, which is a whole other story, and are pinning all our hopes on them being able to stop it. Her doctor has been working closely with her to try to reduce the number of times that it happens, and my daughter said that she can’t because it is the only thing that keeps her going. This actually broke my heart to hear how desperate her life has become.

I really do hope that your D gets the help she needs. Sending lots of love and support.
Yellowcaty
hope4d

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Posts: 4
Reply with quote  #9 
She is on meds-fluoxetine, zyprexa and Lamictal.  She is very impulsive, which I feel is why she is having so much trouble with this.  She cannot use any skills because it needs to be done instantaneously.  Right there-Right now behavior.  It seems like ADHD type behavior.  When she gets an idea in her head-ED or not, she needs to act on it immediately.  Problem is, meds for this seem to all cause weight loss/decreased appetite.

Our plan right now is to meet with therapist (who is amazing) and come up with a plan and contract.  If she cannot stop the behavior even with supports in place at home, then higher up she goes.  This will buy me some time to do some more homework and research the programs. I agree Yellowcaty-I would pinning all of my hopes on them being able to stop it as well. 
I put that hope on Veritas, but unfortunately they sent her on daily passes alone after only 2 weeks and being on an ng tube for fluid restriction and the purging started right up again.
However, I will say-each time we take a little from each experience and build from it working toward recovery.  I understand now why it is said that recovery is a marathon.

I have been going through the list here so we hit UCSD and Veritas.  Next on my list was going to be ERC, but I am going to call McCallum.  I definitely know she needs a place where they will not let her out of their site.   I also do like the concept of a PHP with supervised apartments.

If anyone else has any other programs that they think may help or I should call, please let me know.
Thank you ALL!  My anxiety is much lessened now that I have finally posted and reached out for help.  This forum is "The Wind Beneath My Wings"!

HUGS to ALL!

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