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momupnorth

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Reply with quote  #1 
Just wondering if there is anyone out there who is or has been in a similar situation?
first a bit of history...my d now 14, was diagnosed with anorexia last april (at age 12).  She was very low weight and her orthostatics were horrible...she was hospitalized for 2 1/2 months to medically stabilize and get the weight on her.  She continued to do well and gain when she went home and was improving in her behaviours, state of mind, etc until February this year.  This past February we discovered she had been cutting and it came out that she had been doing so for quite a while (pre-diagnosis).  She was hospitalized then, for 6 weeks to try to get her self-harm and suicidality under control.  She started to restrict again while in hosp but not too severely.  when she came home we had multiple suicide attempts and self-harm issues, leading up to another placement for treatment (not hospital-based this time).  This is where her eating started to go downhill and she was eventually sent to hospital as her orthostatics went way off again and she also developed purging behaviour.
She remained in hospital getting the ed under control for almost 6 weeks but they did very little to treat her other issues.
Forward to now...my d is in a secure treatment facility (placed there under court order due to being a threat to herself).  Her self harm and suicidal tendencies are extremely active and she now views starving herself/giving into the ed as a way to reach her suicide goals.  Though they are trying and assure me they are watching out for her, I have this horrible fear that she is going to go much further down the rabbit hole and that her ed is going to take over yet again.
Has anyone out there ever dealt with something like this where it seems the mental health issues are all blending together into one perfect storm from hell?!  I am feeling so very overwhelmed and lost right now and am in such fear for my d.  we just need to find a way to get her to step back from the abyss.....
would sure appreciate any thoughts, advise anyone may have....
thanks in advance.
mom up north

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martican

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Reply with quote  #2 
Hi momupnorth. My d has other issues besides AN, including self-harm and suicidal ideations and some emergency trips but not the extent of yours. Not that it's not crazy in our house, and we still don't have it under control.
  I wonder, in past post you said that the med she was on were working ... is she still taking them now? Was there any change with that? Can you see her records how is she doing weight wise? Have they treated someone who also had ED on top of other issues? What treatment/s are they doing with her? Do they see the parent as a part of it? What other specialists are involved? You have a right to ask what exactly they are doing when they say they are watching out for her. 
Sounds like a really tough situation. You must feel like in the middle of a tornado. Can you ask the team for more specifics and what is the plan so you can maybe have some hope and vision? Sending hugs x
Foodsupport_AUS

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Reply with quote  #3 
Sorry that your D is struggling so much at the moment. Your D sounds very similar to my D at the same point in her illness, with multiple issues- depression, anxiety, suicidality, self harm and very strong anorexia as well. Trying to treat it all at once was tough and my D spent many, many months in hospital in and out as a result. At the time my D desperately wanted to die and could see no future, so even when she wasn't planning her own death she was contemplating it and more to the point expecting it. 

We got out this place with a number of things, firstly feeding and insisting on feeding - mostly in hospital because she couldn't do it outside hospital. We also worked hard on the comorbids - lots of support at home. School didn't exist for 18 months and when she returned it was very limited. There was lots of small activities planned for her to give her small moments of joy. We also fiddled with her medication. She moved from fluoxetine to venlafaxine which made a huge difference to her once she got to the higher doses, and she also moved from olanzapine to seroquel. We ended up using these meds for a number of years. It took so long, but she is in a much better place now, though she unfortunately is still not recovered from her eating disorder. 

Wishing you all the best, this is so hard to deal with. Cyber hugs to you. 

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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.
momupnorth

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Reply with quote  #4 
hi martician, yes my d is still on meds and they did seem to be working though I plan to request a review and possible increase sooweight wise, she has lost in the past 2 weeks at this treatment centre but not very much (approx 1 lb). this treatment centre has dealt with ed in the past and assured us they could handle all her issues.  they even had in depth conversations with the hospital she was in prior to transfer.  she has a full team including nurses, nurse practioner, psychologist, psychiatrist, therapist, and unit staff. They are starting a version of dbt therapy with her but she is currently not engaging with any of her team.  She is very resistant to treatment of any kind.  she has been at this centre for 2 1/2 weeks now and we are having issues with who I talk to with such a large team and have finally gotten in touch with the point person and are trying to work through all the teething pains.a behavioural plan for self-harm. 
Hi Foodsupport, for us, the one thing we did fairly well initially at home was feeding.  once the self-harm and suicidality started, she became a true danger to herself and has not been able to be home for very long periods of time.  There is just too much temptation here even with tons of support and us watching her like a hawk.  
we are currently trying to work with her team to figure out incentives/consequences for eating and not eating as well as a behavioural plan for her self-harm.  I am trying to trust the staff and allow them to do their job but also want them to have all the information we can give them to ensure success for our d.  I am asking as many questions as I can and sharing as much as I can.  we have meetings set up and I call for updates every day.  my d also calls most days but I have to take most of what she tells me with a grain of salt as her main goal is to come home so she can harm herself.
I am just feeling rather lost right now.  thank you for all the advice and virtual support.
mom up north

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OneToughMomma

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Reply with quote  #5 
Dear momupnorth,

I have no advice for you, but it sounds to me like d has both an amazing team and an amazing mom. You are doing great, and we are all cheering for you. Sending you a big hug.

xoOTM

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D in and out of EDNOS since age 8. dx RAN 2013. WR Aug '14. Graduated FBT June 2015 at 18 yrs old. [thumb]
momupnorth

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Reply with quote  #6 
Thanks OTM, I think the team and I are on the same wave length now and we are getting her drinking her ensure.  we will get her through this long weekend (Thanksgiving in Canada) and then tackle food again. She had a tough time the end of the week and stopped eating/drinking and had a hospital visit which she did not like having to do.  She seems better today and is complying with the proscribed plan. 
Here's hoping this trend continues!!
Thank for all the support!
Mom Up North

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Torie

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Reply with quote  #7 
Quote:
Originally Posted by momupnorth
Has anyone out there ever dealt with something like this where it seems the mental health issues are all blending together into one perfect storm from hell?! 


Well, yeah.  Quite a few of us.  WHen my d was 14, I started getting phone calls from parents of concerned friends.  I had a lot of trouble making any sense of what I was hearing: That d hated herself and was not well.  Then a call from her sibs who had found something she had written about being suicidal and cutting.  Sort of as a side note, she was fasting and losing weight fast.

The oddest part of our story, I think, is that the cutting, self-loathing, suicidal ideation, and deep depression preceded the weight loss.  That made me skeptical that wr would bring D back, since she was so very unwell while still at her all-time high weight.

But I knew she couldn't get well without regaining the weight she had lost.  That's the one great thing about AN: It's very clear what medicine is indicated (food).  And so we locked up the sharps and the meds and found a therapist for D.  And started refeeding.

Our story has a happy ending: Four years later, D is off at university doing well.  She was diagnosed with an anxiety disorder over the summer so I found someone to work with her on that.  Otherwise, she is like any other college student.  I think.  But who the heck knows what is going on in their minds?  Like so many others here, I thought D was fine and was shocked to find out she was suicidally depressed those years ago so I will always wonder and worry.  And watch.

Refeeding was like a miracle for my d.  (Albeit an extraordinarily s-l-o-w miracle, three years in the making.)  I hope it will be a miracle for your d, too.

Keep swimming.  xx

-Torie  P.S. In case anyone is wondering, my d did NOT want to get well.  She wanted to die - didn't think she deserved anything else.  Just because they don't want to get well doesn't mean you can't drag them back.

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

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Reply with quote  #8 
I’m late to this thread but my D in the same position as your D and sounds v similar to Torie’s D. It’s a really tough one - I know my D has been in hospital for one year. I feel despair sometimes but then I have a view (suggested by my husband ) that this is investment time. My D will be 16 at Xmas and there is still time - like with your D to get through this and better these demons are treated now than when they are more independent.
momupnorth

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Reply with quote  #9 
I guess I am struggling with the fact that D continuously says there is nothing wrong with her behaviour...I know it is normal but it is disheartening.  She also has this sense of hopelessness that nobody can help her so why bother.  How did you manage to drag your d back, Torie?  was there a kind of light bulb moment for her? or was it more of a slow process?
Izzie, I do agree with your h that this is the time to deal with all this and I honestly do see a light at the end of the tunnel...the distance of it varies (sometimes by the hour) but it is there.  
Did your d's blame you for putting them in treatment, expressing a lot of anger for it?  my d will often argue when we say we want her to be able to come home, countering that no we wanted to get rid of her which is why she is there (this is sometimes a statement, other times very angry).
thanks for the support!
mom up north

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martican

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Reply with quote  #10 
Hi momupnorth. It is truly very tough to navigate through the automatic emotional responses we get from our child's mental illness, and statements they say. Easier said than done, to externalize any mental illness from our child. I struggle with it too many times. You seem to have a great medical team support in place. I hear you with the light at the end of the tunnel ... when all fails, I tell myself "everything is temporary - good or bad".  I don't think there is anything I can say to make things better, but I am here to listen. If you ever travel to Windsor, maybe a cup of coffee would make your day slightly better. x
momupnorth

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Reply with quote  #11 
I appreciate any listening ear, martican.  It's just good to know others are out there dealing with similar things, nice to know I'm not alone....
Don't make it down Windsor way often but if and when I do, you're on.  I usually only get as far south as Oakville.
Thanks for listening!

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Torie

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Reply with quote  #12 
Quote:
Originally Posted by momupnorth
How did you manage to drag your d back, Torie?  was there a kind of light bulb moment for her? or was it more of a slow process?


Slow.  So very s-l-o-w.

The first step is always weight restoration.  My d was quite a lot better once she was back to a healthy weight (for HER! - her weight was always in the so-called "normal" range).  But even when she was weight restored, she still wasn't back to being herself.  Most everyone else thought she was fine, but those who know her best could feel the difference.  THen one day I realized she was back to being herself again.  100% back.

It took years - about three years after wr.  I'm not claiming she never has a disordered thought about eating - I don'r really know what goes on in her mind.  But you know how it is when you look at them and think "Who are you and what have you done with my d?"  It isn't like that anymore.  As the saying goes, my kid is back.

Keep swimming.  xx

-Torie

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annabanana

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Reply with quote  #13 
My thoughts are with you, Momupnorth. I am glad to see that there was something available for your D! Both you and Martican are welcome to Newmarket, btw. I have coffee AND tea. [smile]
momupnorth

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Reply with quote  #14 
I may just take you up on that annabanana! 

Just found out that d has asked staff not to tell us about her eating anymore.  Since she has removed consent to discuss this, they no longer can.  Though, if it gets so severe that she needs to go to hospital again, they will have to inform us.  I get so frustrated that kids in Ontario have so much control over their care and that there is no true age of consent here.  I am constantly surprised how much control my mentally ill child has over her care and what can or can not be communicated to me!!  it is a ridiculus system!
I only hope she does not remove consent to discuss other things as well...we as her parents need to know what is going on so that we can help her when she comes home!
planning to discuss increasing her goal weight when we go for our next meet...I think she did better when she was at a higher weight.  She was more amenable and much more herself. 
Thank you everyone for all the words of support! 
mom up north

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mjkz

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Reply with quote  #15 
Quote:
Has anyone out there ever dealt with something like this where it seems the mental health issues are all blending together into one perfect storm from hell?!


Oh yeah.  My daughter struggles with self injury, suicide attempts, severe anorexia purging subtype and had been sick for more than half her life.  We tried everything.  Add up all her hospital stays and it would be around 3 years of her life.  What worked?  We got her to a good weight and kept her there no matter what.  She takes meds and has no choice in that.  When she got too comfortable in the hospital, we took her home and used only very short hospital stays.   She was watched 24/7 and had no life if she didn't eat and keep herself safe.  It was a rocky few years but she finally realized that suicide was not an option.  Like your daughter, mine felt nothing was wrong with her behavior.  I would tell her every time I saw her that suicide was not normal and I was not going to let her die no matter what.  I think it was a combination of getting sick of being sick, having no life, trying things and not succeeding, and also a good med combination that finally got her to the point where she is not suicidal and can keep herself safe as well as eat.  Part of wearing her down was me doing things and then sharing them with her, telling her how much I wished she could be there to do them with me, showing her pictures of what I did.  Basically I went out and lived life so I could show her there was a life out there to live.
Quote:

Just found out that d has asked staff not to tell us about her eating anymore.  Since she has removed consent to discuss this, they no longer can. 


I would double check on that if she is court ordered.  You can always go back to court and get that reinstated.
momupnorth

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Reply with quote  #16 
hi mjkz, I have checked on the no consent issue, and it is solid.  I will check again but the rules and ages regarding consent are messed up in Ontario. Thankfully, she is also on a miss one meal, go to hospital protocol right now and they have to inform us if she goes to the hospital, so we will know.  I also know that if she starts to get severely medically compromised, we will be told.  It is just the eating she has asked them not to discuss, not overall health.
I may take a page from your book and continue showing my d all the things we do and tell her how much we wish she were with us to do them.  It may be what kickstarts her healing.  I find it interesting that she has thoughts and plans and attempts at suicide but she also has plans for her future (wants to be a forensic scientist) and has scholastic goals to reach. 
mom up north

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