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awnie1301

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Reply with quote  #1 

This has been one crazy ride so far.  Just some quick background.  We brought our D home from university in early Nov.  She was "officially" diagnosed with AN and exercise addiction.  At the time she was running/exercising for 8-9 hours per day.  Thankfully we got her home before her weight became too low. By New Years she had gained 10 lbs (BMI 19) and was seemed to be doing well.  We had a FBT psychologist that we all loved and D was seeing a new psychiatrist who is amazing.

I think the ED suddenly panicked in Jan and the weight started to drop and the secretive exercise was out of control.  She would wake in the middle of the night and do HIT workouts (despite sleeping with me).  Any time we took our attention away...even for a second...she would do some form of exercise.  She became angry and would debate everything.  I suspect she had some way of hiding food but I could never find it.  She lost all the weight she had gained and her heart rate became dangerously low.

She was sent to the ER when her resting rate was 29.  Even the defibrillator pads on her chest and the "crash cart" by her bed didn't scare her.  Three weeks in the hospital for refeeding and cardiac stabilization and she is home again.  

She has been referred to our local hospital inpatient program.  They have 2 programs.  One is a hospital ward with only 7 beds for really sick patients and the other is a home with a 3 month inpatient program.  Currently our D only qualifies for the hospital ward as she continues to compulsively exercise (BMI is 19 again).

She really wants this.  She wants to get better.  She is on the waitlist (about 2 months).  I am feeling guilty.  I really wish we could do this without the inpatient program.  I am working hard to see if we can make progress before the 2 months is up.  My D thinks that somehow the IP means that she is really sick...something she feels she has to be?!

Any thoughts or advice would be appreciated.  This is taking an incredible toll on our family.  It is especially hard on my other D.  She is very close to her sister (they are almost like twins...very close in age too).  She is missing her best friend and all the things they used to do together.

Thank you

AUSSIEedfamily

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Reply with quote  #2 
Dear awnie1301,

Feel no guilt at all parents dont cause eating disorders and that dont cause any of the other stuff that goes with them.

My D did five lots of IP although the IP was not a very good IP it is now a very different IP.

At times there are IP is needed to deliver a higher level of care and intensive care

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Foodsupport_AUS

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Reply with quote  #3 
Sorry that things seem to be going up and down. I understand the desire to avoid inpatient and admission, but like ED dad sometimes that is the way things need to go. 

When working on things in the interim I assume the plan is to increase weight and to stop all exercise? With compulsive exercise at a very high level it is likely that her weight is significantly lower than it needs to be. Given her exercise compulsion it is likely that any exercise at present is feeding into her illness so it needs to stop too.

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D diagnosed restrictive AN June 2010 age 13.5. Weight restored July 2012. Relapse and now clawing our way back. Treatment: multiple hospitalisations and individual and family therapy.
mjkz

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Reply with quote  #4 
Quote:
She really wants this.  She wants to get better.  She is on the waitlist (about 2 months).  I am feeling guilty.  I really wish we could do this without the inpatient program.  I am working hard to see if we can make progress before the 2 months is up.  My D thinks that somehow the IP means that she is really sick...something she feels she has to be?!


If IP is what she needs to get better than let her go.  You have been struggling for awhile trying to close the loop holes and she keeps finding more.  Sometimes keeping your kid home is not the best idea, the safest idea and can actually hold them back.  If they are offering her a spot, take it and focus on how to keep her still moving forward when she gets out.
Sotired

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Reply with quote  #5 
Go inpatient.take all ego out of this -hers and yours -and ask yourself if you would do this if she had a different illness.the answer is probably yes.lots and lots of people have to use hospital and residential-and sure,I felt like a failure the first time,but I had to get real-we were making no progress at home and we needed the help.
We are a multiple admission family so I can tell you that hospital can save your child's life-and your sanity.im not even joking there-you can feel crazed doing everything alone at home with someone who fights you actively and passively every hour they are awake.if your d wants the help and you have a hospital bed available,take it.she won't be there forever-it might be quite a short admission,but even if it's for several months,it might flick the switch towards good health,and that's totally worth it.
Good luck

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Torie

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Reply with quote  #6 
Hi awnie - 

Exercise compulsion is hard to extinguish.  (Obviously.)  I would want my d to have the best possible care if we had to tackle that, and unfortunately, there aren't too many places that are really good at this challenge.  So I would be looking to figure out which facility would be the best, instead of limiting my options to what is local.

Would you like help brainstorming treatment options?

Best of luck and please keep us posted.  xx

-Torie

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LauraCollins_US

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Reply with quote  #7 
Safety first is a really, really important rule! WHERE is never going to be more important than finding a safe environment where symptoms are interrupted long enough to move forward in recovery. CONGRATULATIONS on getting access to a safe place for that next stage!

It is natural, and even parental, to have moments of feeling guilty and regret. It's the parental curse. But it's also draining and a distraction. You didn't do anything wrong and the "right" thing to do is to identify and follow through on whatever "level" of care fits the situation as it stands and to have a plan for the next stage in place.

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awnie1301

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Reply with quote  #8 
Thank you all for your thoughts, advice and support.  It really is the exercise addiction that is the real "sticking" factor.  Overall she eats well as long as we keep the food coming in predictable and regular intervals.  She couldn't feed herself yet but seems overall ok with what we give her (there is always some debate and fight).  

There is so much else she wants to do.  She regularly asks if she can be part of some activity or event but this illness is really limiting that.  I sense that this is motivation for her to get better.

We would love to be able to send her to some of the great programs that I have found in the US and around the world but money is a huge factor.  We are in Canada so waiting for a program that will be covered by our Health Care is what we have to do.  

Thank you Sotired.  I am feeling a bit "crazy" with all of this and the entire family is showing the effects.  My H is very sad and depressed, my other D is having terrible anxiety, and my S is having angry outbursts at school.  I really hope this will give us all some time to heal. 





MarcellaUK

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Reply with quote  #9 
We were initially only offered family based treatment (I'm not giving the words capital letters as it wasn't formal manualised FBT but it was based on the earlier versions of the treatment). It was made clear that our treatment providers disapproved of inpatient care for our d (and had little access to inpatient beds anyway) and would consider it only "if you fail as parents". This stuck with me for sooo long and made me feel a good deal of shame and failure when our d needed an emergency admission and a long stay in IP.

I still regret many things about our treatment journey. The IP stay is NOT one of them.

It was a difficult time for d, and for the IP staff! It wasn't a magic bullet and there were aspects of the programme that could have been better, but, firstly and most importantly, it saved d's life, and secondly, it allowed the rest of the family the respite that we so needed. My husband too became very depressed, and with his depression and frustration and fear came aggression. He didn't shout and occasionally hit out because he disliked d, he did it because he loves her intensely and was so frightened by her illness and so frustrated by what he saw as a lack of treatment. Our other daughter was pushed out by the illness and was spending less and less time at home. The IP admission allowed h to visit d in a genuinely safe place and take his part in her treatment. He was no longer expected to be nurse and policeman, but just her dad. Instead of being asked to remain calm when she was suicidal and firm when she was in melt-down, he was now asked to stay away if she was really struggling and visit when she was calmer. He was SPLENDID at the visits and she really enjoyed her time with him. He was much better than I was at taking her out for meals, visiting the hospital and just being her parent which was what the hospital wanted us to be - I was still too busy flailing about trying to be the one woman treatment team that I'd failed to be when we first started family based treatment. D's sister also flourished. She came home and invited her friends round. She had a genuinely good time at school and made new lifelong friends as well as kept up with her older ones.

If your daughter needs and is accepted for IP treatment then I would say go for it and don't get too worried about your lack of choice and fancy programmes. The unit our d was in was a specialist adult ED one based within a psychiatric hospital. The hospital itself was Victorian and forbidding although the ed ward was set apart a bit. Ranch style US residential it certainly was not. But the proximity of other wards, including the general adolescent psychiatric ward, made it possible for the staff in the ED unit to run ideas past fellow professionals, to get a truly multi-disciplinary view on where to go next, to liaise and communicate. The small Outpatient local team just didn't (and 10 years on still don't) have those kinds of resources. It helped us as parents feel that our d's illness was being treated seriously. The only regrets I have about our IP experience is that d had to get so unwell to get a place and that transition back home wasn't well managed (it didn't help that the local services were going through a time of transition at the same time d was!). Oh, and yes, my only other regret about d's time in IP - that I didn't spend more of it asleep. It will be an opportunity for you to get the respite you need too.


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Kali

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Reply with quote  #10 
Hi Awnie,

Quote:
She really wants this.  She wants to get better.  She is on the waitlist (about 2 months).  I am feeling guilty.  I really wish we could do this without the inpatient program.  I am working hard to see if we can make progress before the 2 months is up.  My D thinks that somehow the IP means that she is really sick...something she feels she has to be?!


Please don't feel guilty....as you say you are working hard to help her make progress and there are treatment options for her so you are doing everything you can to help. A good inpatient or residential program can be really helpful. 

Kali





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dauntless

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Reply with quote  #11 
These kinds of decisions have felt, to us, like falling off the edge of the world. If it helps at all, know that I think we let the dread and the sense of darkness affect our decision process more than we should have. In the end, we were losing ground at home. More than that, we were living on the edge of not keeping our daughter safe. I'll add in passing that our d would _never_, I don't think, have gotten any grip at all on exercise compulsion at home. It is an unbelievably insidious part of EDs for those it affects.  Our daughter still has a lot of recovery ahead of her and I think  exercise is going to be thing that troubles her the most and the longest. 





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