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Foodsupport_AUS

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Reply with quote  #26 
My D had a feeding tube inserted on a number of occasions. She found it quite painful and uncomfortable, but not everyone does. At times she would choose the tube over eating as she just sometimes found it too hard despite the discomfort. 

If your D is not drinking I would be insisting on taking her to somewhere that will be able to get fluid in. No fluids can lead to collapse very quickly. 

Hospitals and units have their own policies about how long they keep patients in the acute care situation. Here in Australia admissions of this type are generally two weeks, sometimes a bit longer. 

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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.
OneToughMomma

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Reply with quote  #27 
Dear flower medicine,

My d never had a tube, but being admitted was a very good thing.

I think having a bag packed is an excellent idea, and I think you should take d into the ER today. We are not doctors but she sounds really ill. The fact that she is not drinking is very concerning.

I remember how hard this stage is. Once my d's treatment was underway I felt so much more empowered and hopeful.

Keep us posted, we are all thinking of you and d.

Sending you a big cyber 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]
persist

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Reply with quote  #28 

Dear Flower Medicine:

I haven't posted on your thread, yet but wanted you to know my thoughts are with you. My DD was 12 when she was diagnosed with AN and admitted to the hospital within just a few weeks of diagnosis, but in retrospect, that was the BEST possible thing that could have happened. (She was admitted due to a low heart rate, about 46 when she went in.) She spent six days in the hospital with an NG tube (which was really uncomfortable and bizarre to have inserted, but not miserable the rest of the week) and also had to start complying with the hospital's eating protocol, which started very slow and ramped up over the course of the days she was there. At the end of her six-day hospitalization she was released to our care and was able to stay home permanently after that. I know our story is unusual and most kids spend more time in either the hospital or an IOP or residential setting, but it's not impossible that your D will spend less time in a facility than you are imagining. Whatever her ED team decides, the time she spends in their care will be time for you to rejuvenate and prepare for the hard and heavy work of refeeding at home, which is no small feat. I agree completely with OneToughMomma, once my girl's treatment had gotten started I felt much better about knowing our plan and having some control over how to help her heal.

Thinking of you and your daughter, and wishing you strength and comfort.


deenl

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Reply with quote  #29 
Hi flower_medicine,

My son found getting the tube inserted very uncomfortable. However, I do believe that there were times he ate in order to avoid the tube. So all in all I think it was a necessary evil.

My son refused to eat and drink for one morning when he was inpatient (mental health clinic) and his vital signs deteriorated so quickly that he had to be taken by ambulance to the hospital. Please bring your d to the ER if she is refusing to drink or eat.

Please remember that many medical interventions for many illnesses are very uncomfortable/unpleasant but they are necessary. I used to imagine that parents with kids needing chemotherapy dealt with the same feelings. We all have to force our kids into medical treatment, even against their wishes, because they suffer from very serious, sometimes life threatening illness. We need to be the adults with the long term view.

My mantras of the time were 'Gotta be cruel to be kind' and 'Short term pain for long term gain' and one from an old member here 'Parenting is not for cowards' These helped me to be brave and do what was best for my child.

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  #30 
Flower Medine, as mentioned earlier, it all depends on the hospital's policy. When we took my D to the ER, they would not tube her. However, they may if they admit her. Most important thing is to keep her hydrated. Having the tube inserted is uncomfortable, but not terrible. They may give her anti anxiety medication depending upon their policy prior to inserting it. My D refused medication and said it was uncomfortable and her throat was slightly sore for a couple of days. Looking back the tube was more stressful for us. We had been using it as a threat, thinking it would get her to eat. When we admitted her to inpatient, and the threat was more real, we were hopeful she'd start eating. She didn't: She told the Nurse's, "you'll have to tube me." We were devasted that she preferred to be tubed than eat. She was on the tube for 5 weeks. But little by little, the amount of tube//food ratio changed. The tube is a great tool until they start eating 100% on their own again. It takes awhile, as they may have to go slowly to avoid refeeding syndrome. They started my d on 1500 calories a day to see how she did and then gradually bumped it up, so she didn't have any gains until after about a week. Remember, it's a marathon not a sprint.
Kali

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Reply with quote  #31 

Hi flower_medicine,

It sounds like you are getting organized to help your daughter. The rule in the Kali household was: no eating and drinking for 24 hours=an emergency room visit. I remember it being the absolute scariest time for me, right before she went in since that is when behaviors and food refusal are at their worst. Then when she was in care I was so relieved that she was safe for the first time since it had become apparent 9 months before that there was a problem with her eating. 

I'm hoping that bed at UNC will be available for your daughter tomorrow and she will be able to go. Let us know how it goes! It is great that there is a Ronald House there that you can stay in. 

My daughter needed to gain 20lbs and was away for 3 months. Although she was weight restored fairly quickly (8 weeks or so) the program she was in kept her for another 6 weeks on what they called a "maintenance" stage, where she had to continue to maintain her weight while being given more freedom little by little, to leave the unit, come for a home visit, go out to restaurants, do some museum and park visits. Which they had found gave a higher likelihood of recovery, as opposed to discharging people as soon as they had gained enough weight. After that, she did a PHP for a month, and an IOP for 6 weeks, before transitioning to a therapist, nutritionist, and psychiatrist on an outpatient basis. When she got home I was very careful at home to make sure that she ate all meals and there was nearly always someone there to eat with her. (I say nearly because I was juggling a job also) Despite all that, she did lose weight when she transitioned to a lower level of care, although not as much as before she went into the hospital, and I had to do some refeeding at home. I became an expert in preparing high-calorie foods for her. The program she was in did not cure her but it did get her started eating again which I will be forever thankful for. We are at the 2.5 year mark for treatment (although during the first 9 months of treatment she made no progress) and she is doing well now and engaging in normal activities for her age. 

This is a biological brain based illness with genetic components which can cause metabolic issues, and it is possible to make progress against the illness with time and care and good treatment. 

Let us know how it goes! 

Warmly,
Kali


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melstevUK

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Reply with quote  #32 
Hi flower-medicine,

A huge welcome and big hugs.

I live in the UK and am only half-familiar with the US system.

However, my advice would be to do what it takes to get your d hospitalised and re-fed, with or without an ng tube, and for her to stay IP for as long as is reasonably possible for your circumstances.

We haven't had a lot of discussions here on the forum about using other family members - but in your situation I would get all your other children on board in understanding that your d is very sick, that food is her medicine, and I would ask all of them to be supportive at meal times in getting their sister to eat.  

I was a mother with one daughter - but if I had had a big family - I know that I would have educated every single one of them about their sibling's illness, and asked for their cooperation in encouragaing her to eat, in making meal times fun, and just being there for him/her.  

Everyt family has to do what it takes to get help - but I personally believe that the family need to unite against the illness , and that educating the family about the illness and most of all that their sister/brother is not choosing to be ill, but needs their love and support around eating, will bring the family together and help the sufferer to fight the illness.

I have no personal experience of this - but this is the stance I would take in your own situation.
Hugs - such a scary time for you.  Just do what you can to get food and calories in, with an ng tube if necessary.  


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iHateED

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Reply with quote  #33 
How are you doing today?  Were you able to take your D to the er?   When I took my D to the er, I thought they would check her out and maybe keep her overnight.  She stayed there almost 2 weeks just to get medically stable  (and this was after a doctor said she was fine the day before).   She needed and IV drip the entire time just to get rehydrated properly and get her heart beat back up.  

Let us know how it's going if you get a chance.

flower_medicine

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Reply with quote  #34 
We are on our way to UNC first thing in the am, she has managed to keep sipping .She will be going in as an acute medical stability patient. Thank you all so very much , she had 2 entire muscle milks today with half an ensure! Small steps. My God I love that girl. Blessings I'll keep updates.
Kali

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Reply with quote  #35 
flower_medicine

I hope all will go well tomorrow and that your d. will get the help she so needs.

Praying for you, your d, and your family,

Kali

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flower_medicine

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Reply with quote  #36 
She is in treatment and starting on the rd to recovery..i know we have much ahead of us but I feel more hopeful
Kali

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Reply with quote  #37 
flower_medicine you are doing hero parenting. All best wishes for your d.

[smile]

Kali

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persist

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Reply with quote  #38 
I'm so glad to hear she is under medical care and that you are feeling more hopeful. My thoughts are with you. 
flower_medicine

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Reply with quote  #39 
Thank you my heart is breaking being away from her 5 hrs of travel time... Who if any of you have dealt with Unc ceed program...i am so scared they are not taking her celiac serious


deenl

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Reply with quote  #40 
Hi Flower_medicine,

That's wonderful news. I know it is hard being far away but she is safe and taking a big step on the path to recovery.

I would suggest being patient with them over the coeliac question. It is more common than not for ED kids to cut out swathes of food by claiming to be vegetarian, lactose intolerant, coeliac or something similar. If that is the case then you do need to let them deal with it. Otherwise you are leaving an ED restriction in your kid's life, ready to flair up again and cause a relapse.

Remember too that refeeding causes a lot of digestive discomfort that can mimic something like a food intolerance or something stronger. It will take time to tease out whether it is actual problem or a side effect of ED. Give CEED the time to sort it out.

On the other hand, true coeliac disease is a serious medical condition. Has your d suffered from it since childhood, been tested and received a diagnosis. If so, I would suggest you give CEED all the relevant documentation and press to ensure it is very clearly highlighted in her file.

Use the opportunity now to recharge, get lots of meals into the freezer, learn as much as you can about ED and FBT cause you will still have to do most of the support for months to come. And, of course, spend lovely time with your nearest and dearest for the pure pleasure and also to strengthen the bonds for the challenges to come.

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.
toothfairy

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Reply with quote  #41 
Dear flower medicine,
Kudos to you for taking the first huge step into helping your daughter recover.

This is the start of a long journey that takes at best a couple of years for full recovery.
This is a marathon & not a sprint. When your daughter is discharged from hospital, you will need to start learning now how to deal with this illness at home and keep pushing her towards recovery. This takes many months often years of family based therapy FBT at home. Even when your daughter is stable & weight is up, she will need supervision & to be gaining for many years to come.
I am so sorry to tell you this now, but you need to start to prepare for this by learning as much about this horrible horrible illness as you can.
Many of us here have had to run our homes as an extention of an ED unit for a very long time to help our kids to recovery. It is a slow process & requires the parent to completely take over.
I advise you to start reading some books straight away for example -
A must buy is Eva Musby's book " how to help your child eat well & be well".

Help your teenager beat an eating disorder by locke & Le Grange.
Skills based learning for caring for a loved one with an eating disorder by Janet Treasure.
Eating with your anorexic by Laura Collins.
Thats to start..

This is a steep learning curve, keep asking questions,
Best wishes

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Son,DX with AN, (purging type) in 2015 ,had 4 months immediate inpatient,then FBT at home since. He is now in strong recovery, (Phase 3 ) and Living life to the full, like a "normal"[biggrin] teen. This is with thanks to ATDT. Hoping to get him into full recovery and remission one day at a time. Getting him to a much higher weight, and with a much higher calorie plan than his clinicians gave him as a target, was instrumental to getting him to the strong recovery that he is in now. Food is the medicine.
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Reply with quote  #42 
She may or may not need a tube-our d and the other kids we know who have NG tubes usually are asked to have little sips of water while the tube is being put in.once it has been put in the nurse checks that it's in the stomach by using a syringe to bring back some stomach contents (fluid) .then there is an X-ray done.
If the child pulls the tube out it is re inserted doing all the same stuff again,so usually they don't pull it out more than once or twice.
I hope that you are in process of travelling and settling your d into her programme you were looking at.
I do know that the feed in the tube can cater for different needs,but I have the same question as dee like-is this diagnosis one made by a doctor?because self diagnosis during the course of anorexia illness ...welllll... it's unreliable.
I have to be honest-my daughter lied like a rug during her anorexia.i used to say to the staff at the hospital "if she tells you the sky is blue,you best double check for yourself ".she couldn't help it,but it didn't change the fact that lying was part of the deal.often they don't see it as lying either.thry might genuinely believe they have eaten a lot,even if they haven't.but my d would palm her meds too which also made her hard to treat.
As toothfairy said,it's a marathon,not a sprint.i don't know anyone whose child came out of treatment cured-but many have really great plans that they learn to implement at home once they have had some inpatient treatment done.
Good luck

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eternalhope

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Reply with quote  #43 
Dear Flower Medicine,

The first week is really difficult, but you are doing the right thing. She is in a safe place that will work toward restoring her health. So much great advice above. Learn all you can while she is there and know that they will sort through the celiac disease issue. Start planning your visitation and how that will work with your other kids. I only have one child, but we met another family who had 13, and they would rotate who would come. Bring board games and a deck of cards as you won't be talking about food or treatment. When she calls, listen, be sympathetic ans stay strong (sorry if I'm stating the obvious), as she may complain or be upset over the phone. My d constantly argued with the nursing staff about how much to eat and thought they were unfair to her. She was non-compliant many times, but as the weight went on, those ED behaviors got better. She has been away over 8 weeks now, and it's the best thing we ever did. She calls us every day, and we visit ever other weekend. We stay at the Ronald McDonald House and take the cheapest flights we can find.
flower_medicine

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Reply with quote  #44 
Thank you , just to know others are doing it gives me strength, prayers and love for everyone who has written above... We all need it
flower_medicine

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Reply with quote  #45 
Hi there folks ,I have been in the back watching and ,reading and hopefully learning.D has been in treatment now for almost a month and is going on 85 % weight restored .We have been given the discharge day for this coming Monday. I am glad she is getting out but terrified at the same time.She has had no improvement with her mind it seems. She is actually more depressed and seems more anxious than ever.She wont go on meds until she is home with us. That's the agreement anyways. She has been diagnosed with OCD as well as having some pretty strong sensory issues.To get to my point ,we have been looking for a residential program for her to step down into.Sadly none are around us or available until OCT 1. I was talking with a lady from the facility yesterday about my D ,and she out right said to me...well good luck with keeping her weight restored and her eating.It is nearly impossible for you to help your daughter straight out of inpatient.You should leave her there until you can work out rides to our partial hospitalization or wait until our residential has opened. This as you can imagine was very very discouraging. I mean honestly I don't see where I have a choice here. I can't drive 4 plus hrs daily to have her in the day program, I wish it was an option but it's just not. I need some advice and I need to draw on experience. My D is still really struggling and claims she has receive no help while inpatient other than they have been feeding her. She seems more down and more agitated. I don't see how this facility will help her with these issues, but honestly I am not to confident in our abilities here either.
Torie

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Reply with quote  #46 
Hi flowermedicine - Thanks for the update.  Sorry, I don't understand your geography - I wonder if she could go to Veritas after she is released on Monday.  It is generally a very challenging time right after IP / residential so it is worthwhile to explore all your options.  I also wonder if her current facility might be willing to keep her longer in the full-time program  - do you think that might be an option?  Some here have found that if they fight hard enough, they can convince the treatment providers to extend / modify their protocol.

Best of luck and please continue to keep us posted. xx

-Torie

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deenl

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Reply with quote  #47 
Hi flowermedicine,

There is a very strong chance that the OCD and sensory issues are SYMPTOMS of the ED and not separate problems. Did she have them before she had the ED?

Our son developed unbelievable problems when in the thick of ED; he would only whisper and any noise especially breathing, coughing, eating triggered a meltdown; he wouldn't shower as his skin was too sensitive (he has always been sensitive to clothing labels and seams on socks); his day was dominated with OCD and repetitive movement.

And they have ALL melted away without any treatment what so ever apart from nutritional rehabilitation. This is quite typical and is why many facilities will not make additional diagnoses until a patient has been WR for 6 months.

As for eating at home, well, we all get it. I was in the exact same situation. Our son lost weight during the first IP and his second IP was in the children's hospital with no ED knowledge at all. So it really fell to us to figure out a way to support him eating. All I can suggest is that you read around the forum and pick up ideas. The Hall of Fame may be a good place to start. I used to think of it as a smorgasbord of ideas and I'd pick the ones that suited us best. If a member's story resonates with you you can click on their name and on the bottom right is "Find all posts by ..." or "Find all topics started by ..." Then you can follow their story and pick up tips.

At the end of the day it will always come down to you. No ED patient leaves IP fixed. I personally believe the very best treatment is 3 meals 2/3 snacks day in day out. Focus on that with all your energy.

I do understand where you are because I remember it well. Wanting to shake professionals I came into contact with and scream 'But HOW? How do I get him to eat?'At the end of the day it was up to us to find the answers ourselves by using this forum and reading (I found Eva Musby's book so choc-a-block with info and answers. If you can I recommend you download it asap)

'But what about treatment? Surely he needs something?' Well at this point he still refuses to go near any therapist (he has always been intensely private) and he is doing fine. I will see how things go and find suitable therapy if/when needed but for the most part food has been his medicine. Although I do believe there are many patients with trauma and/or co-morbid and/or pre-existing mental health issues who need additional support and treatment, our son is not one of them. And maybe your daughter too.

Stay calm & keep reading. You'll find the answers.

Warm wishes,
D


BTW, I think the lady in the facility was a disgrace. Very many of us on the forum have never had IOP, PHP or any other options and we have done it. We had a very difficult time in the beginning but managed it.

__________________
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.
flower_medicine

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Reply with quote  #48 
WOW thank you so much for your encouraging words and for taking the time to share some experience with me. My d seems like she is in the depths of despair at the time being. It breaks my heart for her.I know she feels like she is crazy. No one has explained to her that she is not going to have a quick fix.She really thought she would be leaving IP better than before.It seems though she has emotionally deteriorated since being there. She talks back to me and gets really angry fast.This is not her.She has never said a cross word to me in her entire life,she is strong willed yes but always respectful.I am finding it harder and harder to have phone conversations because they seem to just go in circles and she gets more and more upset. Its like someone has replaced her with someone or something else. I am scared for her.But reading and drawing off some positive words gives me hope.The goal coming home is to continue re feeding. She says she wont go back to the therapist we has for her,she says she is weird and she doesn't like her. Im  frustrated with this, especially since she is literally the only therapist in our region who specializes in ED's. So what I am reading over and over is that re feeding her is the best medicine and that with time her mental condition should improve as she become more and more nourished.. Please if anyone can tell me more on this process I am all ears. Also did you find that you felt you were losing your son/daughter. I am literally grieving and crying a lot.I know I have to get it together and be strong for her recovery.What tips might you guys have on being firm?
annabanana

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Reply with quote  #49 
Hi there,

my case is a little different because I have 17 yr. twins with ED.  I could tell you things so you feel a little better about your situation [smile] but instead I just want to encourage you at this time because this is a very long journey. 

My girls were also 'perfect' in so many ways, so the illness has traumatized all of us, especially my husband, who I think will need therapy himself.   I think there was some element of human pride as well, and a huge dose of humble pie was in order for us, and in so many ways, it's a blessing because I would NEVER have been aware of mental illness otherwise, and so many suffer silently.

For us, I involved my younger daughter (2 yr younger) in the recovery process and I do think that has buffered some of the trauma to her, because she was also a part of the healing (solution.)  Educate your family, age appropriately.  Have talks together.  We were a talking family so we talked and grieved through the tears many many times. 

Take one day at a time.  And don't be afraid to try things to help your daughter.  We've had to do many u-turns because we had no professional guidance.  After almost a year, we are still waiting to be seen at a local hospital.  One has pre-existing OCD/BDD, so for her, weight restoration did not end many of the mental health issues and the other has BDD, so we expect long term therapies for them at this time.  

You are your daughter's champion, even with some stumbling along the way.  Yes, it is downright scary to see the changes in your child, but you will see glimpses of her real self little by little.  And the support from this forum will carry you during the toughest times.  [smile]  God bless you.









Kali

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Reply with quote  #50 

Hi Flowermedicine,

This is all uncharted territory for you and your daughter and I'm sorry that the geography and availability of beds seem to be difficult to navigate right now.  

Quote:
You should leave her there until you can work out rides to our partial hospitalization or wait until our residential has opened.


The hospital seems to be saying that they could have her there until their residential has opened if I'm understanding this right? If the partial is not an option right now because of the transportation issues, could she stay in the hospital until a bed in residential opens up? At 85% she has a ways to go yet with weight restoration. And from what you are saying it sounds as though she is very much in the eating disorder right now and suffering, and you have other children and you also work. Your daughter's anger, the rudeness, her unhappiness, these are all brought about because she is suffering in the disorder. 

I think it is all about trying to understand what will work best for your daughter and your family situation as a whole. Do you qualify for family leave in order to help your daughter at home? 

It takes a long time, unfortunately. There is no easy fix. There is waking up every day and trying to make the best decisions and do the best that you can to help your daughter, and if some things don't work, trying again the next day. Some parents here have had the experience that weight restoration and meal support at home for a very long time have helped their child become well again. Some parents have had the experience that weight restoration along with therapy, continued full nutrition and meal supervision and excellent professional support were all helpful for their child to make progress against the illness. And some parents have had the experience that residential treatment and hospitalization and then strong support afterward helped their child turn the corner towards remission. 

Let us know how things go, we are here to support you as you try to make these difficult decisions.

warmly,

Kali


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