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DCF - Don't I have enough to deal withOpen in a New Window

This forum has been a life saver for my AN D, my wife and especially me, thank you everyone who responds with such great advice, and support.

So we pull my daughter from Residential Treatment after 7 weeks of no weight gain, and now the Connecticut Department of Children and Family Services is involved AGAIN because we made this decision against their clinical advice.  They have already forced their residential agenda on us in 2015 and would not let us take our daughter out of the last residential treatment center where she was trapped for FOUR MONTHS.

We want to try this at home, my wife is amazing, we have our tough days, but she was doing good in our home from Aug 2016-Dec 2017.  She relapsed in December.

We were hoping to get her back into a PHP program, and she was there one hour, when they called me and claimed all her labs were way off and she has to be admitted immediately to THEIR inpatient unit.  We decided to go to a different hospital, where she was this past December, because we were suspicious of their agenda and wanted to verify her labs.  Sure enough, everything was fine, she was released Friday night.  When we said we were going to a different hospital they demanded that if we were released we were to bring her to their hospital anyway because they were worried about her this weekend at home and said labs could change and she could die.  She's 100 lbs and 5' 6".  We told the hospital staff and they said she does not meet their criteria for their in-patient eating disorder unit.  (She was in that unit in December, we were able to be with her around the clock for 6 days right through Christmas.)

I am positive DCF will be breathing down our back on Monday, if not Sunday, and like last time they will probably file an immediate court order to have her removed from our care.

I am so scared, and it is so hard to hide all this trauma from my daughter, last time they traumatized the whole family, my son was devastated.  I had to hire a lawyer and we were cleared of medical neglect.

We have another PHP program to look at on Monday, and we have contacted an at home program which I learned about from this forum, how do I get them to leave us alone?

Fortunately I have a legal plan so I think that will help, and I know I have complained about finances, but we have already met our insurance max out of pocket, so more residential treatment will not be cost issue.  I just want to be able to choose and change providers as we see fit.

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Atypical Anorexia - is this a thing?Open in a New Window

My 17yo daughter is a talented performer, driven and motivated to succeed but has always been thin and has no appetite.   We are not sure if she has anorexia and she denies that she has a problem. 

The whole family is in denial,  including daughter (there's nothing wrong with me) and Dad (she's just lazy and doesn't have a big appetite) and 21yo brother (she's just a brat), and my friends (she's fine, you were skinny as a kid and grew out of it).   My excuse was (She can't be anorexic because she 'says' she likes food, is confident and happy most of the time, doesn't diet, doesn't think she's fat and doesn't overexercise).

When she hadn't got her period by 16 and weighed 39kg (86 pounds), I persuaded myself she had to get to the magic 40kg .  I started feeding her up (no ED Assesment) and managed to get her to 49kg, with regular periods.   Thought my job was done.

She plans to go to university overseas next year (we live in NZ) so when I noticed she was losing weight again (44kg) I really got concerned.   Now we are seeing an ED therapist but D is angry, doesn't want the stigma, thinks she is fine, hostile to the therapist.    Every meal time is a battle and she eats so slowly and drags every meal out that I am taking breakfast away (3/4 eaten) and putting morning tea in front of her.  She has supervision at school for lunch but not morning tea.

Not having a conclusive assessment is making life very difficult.   At the moment it is Atypical Anorexia, because she doesn't display all the conditions.  I think maybe she has ARFID (thanks DR Google) because she is extremely picky and since we started FBT stage 1 the fussiness is increasing.  But no food fears or anxiety.

So D spends her whole therapy time in a hostile debate using these ED checklists to prove she does not have an ED.  Since I am now realising that she does have an ED (non specific) my D tells me the therapist is brainwashing me.   With no progress (except weight gain through supervision) I wonder if I would be better just keeping on with the FBT1 on my own?    She doesn't like the therapist but I read in other posts that this is not necessarily a bad thing as the therapist is tough on her.

Any advice as to whether FBT works without outside counsel?

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Week long Family Intensive program at UCSDOpen in a New Window

I am starting a new thread in the hopes of finding everyone who has done this program.  We just bit the bullet and signed our family up for the week of March 6-10th (after finding out about it days ago).  That is only 10 days away!!!  It will be tough (my husband is missing his huge global meeting) but we both believe it is the right thing to do to reset our family and get back on track. I am having panic attacks though about telling our d.  She actually made weight yesterday at her appointment (thanks to 4 days of her packing in the food out of fear of not making weight) so this will come as a HUGE surprise.  She will feel completely blindsided and betrayed. Not to mention my husband has to fly soon after we tell her so I want to be as prepared as possible.  My questions to those of you who have done it are:
1. How/when did you tell your child you were going?
2. What was their reaction?
3. were there any severe behavioral ramifications once they found out? (I am fearful of my d's reaction) and if so what did you do?
4. How did your other children react when you told them?
5. Did you tell the school about the program (our school does not know about our ED yet)
6. Was there anything you wish the program had/had not done better?

any information you can share would be so helpful. thank you! 


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Cause for celebrationOpen in a New Window

I know there are lots of people struggling hugely at the moment and I don't want to minimise any of those difficulties, but I do want to share with you a little glimmer of happiness here - you guys have supported me along the way so much,



Yesterday my daughter ASKED for honey soy noodles (never had this before....thank you Shopkins for giving her the idea). I made it tonight and she ate the lot!!! Chicken, pepper, mushroom, ginger and noodles! She said, "that was yummy, can we have it again soon"!!



Two months ago the only foods she ate were Scotch pancake, chocolate and ham sandwich. Today is the first time in around 6 months that she had eaten what I would consider to be a normal meal.



We are so delighted we've stuck some prosecco in the fridge!



Still a way to go, but thank you once again for the support, encouragement and good vibes

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Interesting Ted Talk about AnorexiaOpen in a New Window

Hi,

I wanted to share this video which I think is a very articulate and meaningful description of the descent into anorexia and recovery. 



Kali

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MealsOpen in a New Window

Hi everyone. I've been absent for a long while. Sorry.

Our story is ...my D is 30 and has been diagnosed with An ED for about 4 years now. She lives with us and she is weight restored beyond bmi and may have more to go. However, she still restricts etc .She is the strongest person I know and keeps fighting after many meltdowns. She wants to recover as she is sick of the fights in her head and all that goes with it. We had an arrangement that we would plan a week's menu together for dinner each contributing ideas. It gave her some input and choice and relieved me of the stress each night of what to cook and I thought it would give D a chance to talk about variety of food etc and give her some power in decision making. However recently she said she was sick of this as then it locks her in to certain foods and wanted to go with her intuition and what she feels like. This is fine as she is mature about her preferences. BUT there is always some to and froing and I guess what I'm trying to say is that I feel some of my power is lost in this and the daily stress (alongside all the other stresses that go with living with an ED) of this is back. I felt with the dinner organized I could deals with anything else that arises. As I'm writing this I can see answers coming but I just don't know what to do. Before, with the planned meals I didn't have the stress of a daily decision. Am I giving D too much power? We don't eat a lot of the foods my husband I prefer as she "doesn't like that". She has cooked her own meals but many times it has involved a meltdown. I think she has to do more and more of her own cooking though. I believe my daughter's decisions are mature ones and I can see glimpses of the daughter we once had. I hope this makes sense. I know recovery is a minefield and would love some input as to what to do. I'd better stop now as I will probably ramble.

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Gastro doctor?Open in a New Window

As I mentioned in the other thread, we had some weigh loss with my daughter.  Her pediatrician is NOT an AN expert and honestly seems to learn quite a bit from me. 

That said, she wanted to refer my daughter to a gastro specialist to prescribe her 'appetite stimulants'.  Has anyone done this and did you see any benefit?  I know people with AN learn to get past the hunger pains especially when fully restricting so I'm not sure if it will make a difference either way.  Just wanted to get some feedback/input.  Others have recommended medical marijuana.

Thanks

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Any YAs out there ever feed themselves to recovery from low bmi?Open in a New Window

 D, who has been AN for about four years now, started relapsing 14 months ago and has lost every scrap of weight she put on, is stuck. She has been adamant about feeding herself, and patently it isn't working, now at BMI of 14 or 15. I've told her she is on her last chance, then I take over. I am dreading it, I don't have the same resilience I once had.
I was thinking of hiring a home help- has anyone tried this and found it worked? 
Our insurance doesnt cover hospital, but if she loses more weight, she will have to go and we'll deal with that. That is the plan so far. Is it any good?
I am very burned out now. 

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Self-discharge from IP - what to do?Open in a New Window

My D has been in IP on a general psych ward since October, having previously been admitted from May until August. Her weight has never been dangerously low (her BMI is considered within the 'normal 'range), so her admission was more about trying to challenge the very entrenched ED behaviours and self-harm/severe depression. She's been very much up and down since admission, and we've felt pretty stuck. At least though she was attending the school there, and socialising with people on the ward. 
However, since having a week at home over half term she's now refusing to go back. To her credit, she's been following her meal plan without too much argument, and if she has been self-harming she's hidden it extremely well. She's been getting up, getting dressed, and generally trying to prove that she is 'normal'. This is, however, the girl who was hypoglycaemic and screaming at having to eat even a bit of fruit a couple of weeks ago. As far as she's concerned she can self-discharge and just walk back into her old school (which until now she's refused to attend, even for half a day a week, claiming she didn't care about it), and everything will be fine. 
She's so bloody-minded that if she's suddenly decided that she's going to try to get better, it could just work. I'm keeping an open mind. My concern though is that the effort is going to be too much for her, and that she'll crash, badly. She refuses to see anyone from CAMHS (apparently they're all 'stupid'), although thankfully we've got the Supported Discharge Service on board who can provide more intensive treatment than CAMHS can. Even they say though that my D has to want to engage with them to a certain extent, and I'm not sure she does. 
Do ED sufferers (and remember, my D is EDNOS with AN cognitions, rather than strictly speaking AN) ever manage to turn thinks round, just like that? Or is this going to be horribly painful?

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desperate for adviceOpen in a New Window

Its been a looooong time since I posted anything on these forums, but the past few years have been absolute hell with my D so Im back and in desperate need of some advice-



As Im sure all the UK members know, the NHS is in crisis and my D is just at the age where CAMHS are reluctant to help as shes phasing out of their service in a year but she is still too young for Adult MHS. She currently has a BMI of 15.8 and has recently adopted the argument of 'well 15.8 isnt that low and CAMHS dont think I need treatment so clearly Im fine and dont need to eat'.



What do I do with that?! Logically I know that 15.8 IS low but theres a big part of me that just wants to agree and say that it is fine and that it isnt *that* low because Im tired of fighting. So please fellow parents, any advice at all is welcome. Talk some sense into me or give me a boost, it is desperately needed right now.

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sadOpen in a New Window

So today somebody told me that D's ED needs to be treated by a psychologist and that it's better not to make a fuss about her eating or comment on it, since that might cause her to stop eating instead.  Hearing that makes me really sad because I know that without our unwanted help D will definitely choose to starve.  I told that person that the brain cannot heal without food, but I don't think he understood what I meant.

Seeing GP tomorrow and really hoping the GP will not insist on weighing D, not even blind weighing. I don't want to deal with a meltdown in the GP's office!

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Hostility toward therapistOpen in a New Window

My 18yo D is openly hostile toward our FBT therapist. We have been seeing her for about 5 or 6 weeks now. Prior to that she was in individual therapy with a different person. We are still in FBT phase 1, but D is generally cooperating with eating, has gained about 13 pounds and gotten her period back, normalized labs. Question is: can I expect her hostility to abate as we get more into phase 2? Or should I cut our losses and look for another provider?

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Advice for highschoolerOpen in a New Window

Hi! I have been reading posts on/off for a year now and am so thankful for all the amazing advice.  I am having trouble finding parents with a similar situation though so I thought I would post.  My d is 16 almost 17 and we have been dealing with AN for a year and a 1/2.  Last fall when we reached the bottom of the rabbit hole (i hope) we were facing a short hospitalization due to low heart rate/bp but I was determined to try re-feeding at home so that my daughter could stay at school.  She is a classic overachiever hell bent on getting straight "A's" and we thought that all long as we could get the weight on we should try not to add to her anxiety (she has a strong anxiety disorder) by yanking her out of school. We met her for lunch everyday and monitored all but one snack per day.  We managed to get 2500 kcal/day, working up to 3000. Our journey was rocky with all of the behavioral tornadoes that many of you have faced as well.  We learned to slowly shed our learned ED parent enabling and become stronger in the face of pure destruction. Unlike many AN patients our daughter has remained fiercely social and school focused..threatening to run away if we prevent her from seeing her friends or missing school.  She initially ate just enough to keep us off her back and then eventually with the threat of inpatient treatment over xmas she finally got more on board with the re-feeding.  We are up 12lbs but have 12 more to go just to get her to her pre-AN weight.  Unlike many AN patients she does not seem to fear food or fat. she will eat no problem as long as it is her choice of how and what (she too has given up dairy/red meat). Her original restricting was to calm her anxiety and she has some but not severe body dysmorphia.  Now we seem to be stagnating.  She had been preparing all her own food and/or eating out as she was steadily gaining a pound per week so we felt it best not to rock the boat.  Now however i can tell she is not eating as much and we have not gained anything in 3 weeks.  I am at a loss of how to proceed.  We never got to the "pull her out of school with 100% parental control" because she was good at feeding herself (with us watching)(she makes herself toast with avocado and 2 fried eggs for breakfast for eg.) So she is in school, her behavior is better and she is doing well in her classes but we have reached an impasse..her doctor says we should just do our best to get as much weight on until june then admit her to a day treatment program all summer (which she has stated she will never talk to us again if we do that to her).  That seems so passive to me. I have worked so hard to get her through her junior year it seems weird to pull her out now but i cannot see how we will get those remaining pounds on.  I am panicking as I know she wants to go to college in a year and a half but i cannot see how she will be able to do it.  I feel in a grey zone..her ED is not severe enough (right now) to hospitalize her but I can see all the manipulating the ED is doing to convince us she is ok when i know she is not.  We have told her (via a family contract session with her therapist) that if on her appointment this thursday she hasn't gained the 2 lbs we agreed on (over 2 weeks) then we will increase monitoring. She has been eating like crazy in an attempt to get those 2 lbs before thursday....good she is eating, bad because it is not indicative of a healthy mind.  She just wants us off her back.  I am so tired of catering to her myriad of medical woes (hair falling out, acne, insomnia) when she refuses to take any anxiety meds and isnt eating as much as she needs to get a steady weight gain.  I feel like as soon as i reach my limit and want to pull her out of school to focus on this 100% she ponies up, eats like a champ, gains some weight, we back off, then she coasts for awhile. I am at a loss of what to do right now. any input is greatly appreciated. 

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RefusalOpen in a New Window

Hi all,

First post on here!

Any suggestions of dealing with refusal to eat/drink.

Just realised how much d has been hiding and now more vigilant and so she is refusing.

Also behaviour deteriorated to hysterical outbursts, head banging on walls.

Feeling desperate, trying to avoid in patient admission but not sure we can avoid it, if refusal increases/continues

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Long time no visit so here's an updateOpen in a New Window

I have not posted here in a very long time.  For those who do not recognize my "name", I'm the parent of a woman in her 40's who has been battling with AN/BN for a very, very long time and who has multiple diagnoses that make her life very difficult.  And for her family, so very sad, as well.  I cannot figure out why the bold came on ..... sorry.  not intentional.

There's really no change to report because this year has been all up and down as usual except for the fact that her only substance of choice now  is water.  To some of you who know her background, this may seem like a good thing.  But, in fact, it isn't because now the drill is a weekly stay first in the ER and then in the hospital for a few days so the docs can get her electrolytes back in order so she won't die either of a seizure or heart attack or both.
And, she won't stop.  And, she wants to die but then calls for help when she realizes she might.  Lately, however, when taken to the ER, she becomes furious.  So......

I came home today after driving in to pick her up again to take her where she lives only to be greeted by her nephrologist (who has been working with her) who told me they are keeping her for at least another day because her sodium is already on the downswing.  In a nutshell, she is refusing to follow their recommendations of low(er) fluid intake.

So, after bringing her in a change of clothes and toiletries for her hair (conditioner), etc. and saying hi, I left.  Her language and demeanor towards me has become increasingly rude - abusive is a better word and many of you know what I mean - as her weight also is dropping and I have been advised (rightly so) to visit briefly, reduce the amount of time I spend with her because I've  run out of abuse tolerance, and go home.  

I'm also in "give-up-ville" right now because I know at this point I have done everything, everything possible in all directions with all methods of approach - legal, medical and otherwise - and just need to detach, love her and hope for the best but prepare for the worst.

So, there you have it.  I absolutely detest this disease.  The only bright spot, if one can call it that, happened this week when I received a document about the latest research re Borderline Personality Disorder and it looks like - finally - that researchers are discovering, as they did re schizophrenia and autism and then ED, that this is primarily a genetic disease.  Yet here where I live, even one part of her team still lives in the past with all the myths and misinformation about not only BPD but also ED.

So, even though I am where I am and she is where she is, I am rooting for those of you who are just starting out, want to encourage you to seek all the help you can NOW to get your son or daughter into recovery, and am offering what little help I can by participating in Laura's Starfish package gifting - such a wonderful idea.

Love to you all,





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