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flower_medicine

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Reply with quote  #1 
We are here in NC as,well we have six kids one,with anorexia. She is 15 . I am seeing her melt away before my eyes.. We have a therapist and have set up for a nutritionalits. And her reg Dr. I am not sure I can do what I need to for her.She is only on ensures and that's a horrible fight.Shes down to 88 pounds. At 5 ft 4 inches. We are getting an EKG done this week.Im just thinking she might really need that hospital stay but we are all terrified. She doesn't want to be separated as I feel the same! What to do???
Foodsupport_AUS

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Reply with quote  #2 
Hi flower_medicine welcome to the forum and sorry that you have had to find your way here. 

With six children and one seriously ill with anorexia you have a lot of work on your hands. I would be looking at getting that full medical assessment as soon as possible. If she is losing weight still then things need to change and quickly. Please read widely around the site and in particular read the FEAST booklets here  if you have not done so already. 

No one wants to send their child to hospital, but when it comes to a life threatening illness, that is exactly what may be needed. Your D is almost certainly frightened however her illness makes it very difficult to see how ill she truly is. Is her regular doctor familiar with eating disorders? It is not uncommon for regular doctors to be fooled by how severely unwell our children are when they first present with an eating disorder. Making sure that things are fully assessed is essential for safety. 

If she is only taking ensures things can still be done at home but those need to be increasing in number so that she starts to gain weight and then continues. Please feel free to ask lots of questions. 

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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.
Sotired

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Reply with quote  #3 
Hi flower medicine ,
Welcome.its really important that you don't show the same fear of hospital that your d does.there are several truths that have to be understood in your situation.with six children it's going to be next to impossible at this stage for you to be able to supervise 24/7 or as close to at the moment.your daughter has already lost a significant amount of weight and continues to do so which means there are holes that need plugging in her treatment plan.
Food restrictions,purging,self harm,exercise compulsion,hiding food...how much has your team talked about this with you?then there's waterloading to trick the scales.
I learned to look at hospital as another tool in the toolbox.its is scary when you put them in the first time-but it can be,and often is,a life saver.anorexia fears the hospital because the hospital staff know all the tricks anorexia does.your daughter is not in control of her brain right now-anorexia is firmly in the drivers seat.its your job to stop the hijacker(anorexia) from crashing the car.(your daughters life).
Your daughter may require tube feeding to get her weight back up initially and then go back to fbt which is the model mostly used with her age group.if this is started in hospital then it means that when your girl gets home you should hopefully have learned the skills helping feed her in hospital and then can take them home and use them there.
They don't come back 'fixed',they comeback weight restored and then the work continues at home.fbt is family based therapy in case this hasn't been talked about with you yet.
We made the mistake of going to a private therapist first and listening to our family gp,neither of whom gave us good advice.for us hospital had to be part of our plan.
My advice is don't take any option off the table because it scares your daughter.she is already scared and will continue to be until anorexia is gone.your job is to find what's effective treatment for your situation and then move heaven and earth to make that happen.our window of time to help them in the child system can be smaller than you think,so use what you need to while it's available .
Keep coming back,ask loads of questions and only take on board what you need to with anyone's advice here and in real life.for example I only know about extremes,my d was severe and got that way quickly.thats not the case for everyone here.
Good luck,


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toothfairy

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Reply with quote  #4 
Hi there & welcome from Dublin,
Your daughter is very seriously ill, & has a dangerously low bmi of 15.1.
There are lots of medical complications that start kicking in at this low weight if they havent already.
She needs a full mefical work up & if you cannot te-feed her at home now, she needs to go to a higher level of care.
For example Veritas. ( others here will know more facilities in NC).
I would start the ball rolling for a referrral to an evidence based inpatient facility today, if she is only on ensure & thats a fight.

Please note things can go downhill very fast from here,if you do not take immediate action..
I would also consider taking her to ER today to have her medically evaluated & even tube fed.
One way or another I strongly advise you to line up your options immediately.
If your daughter had any other illness & was going downhill you would not hesitate to take her to a treatment centre. This is the same regardless of the resistance we face as part of this horrible illness.
Here are The AED guidelines to print & bring with you if you go to ER.
Best wishes

__________________
Son,DX with AN, (purging type) age 13 in October 2015 ,  (4 months immediate inpatient) , Then FBT at home since.and making progress every day. He is now in good recovery, and Living life to the full like a normal teen. We are not completely out of the woods yet, but we can see the light at the end of the tunnel, thanks to ATDT. Hoping to get him into full recovery and remission one day at a time.
toothfairy

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Reply with quote  #5 

http://www.aedweb.org/images/updatedmedicalcareguidelines/AED-Medical-Care-Guidelines_English_02.28.17_NEW.pdf

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Son,DX with AN, (purging type) age 13 in October 2015 ,  (4 months immediate inpatient) , Then FBT at home since.and making progress every day. He is now in good recovery, and Living life to the full like a normal teen. We are not completely out of the woods yet, but we can see the light at the end of the tunnel, thanks to ATDT. Hoping to get him into full recovery and remission one day at a time.
flower_medicine

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Reply with quote  #6 
Thank you all, seriously I have not had a soul who is in the know to talk too.My husband is a loving support but we know nothing other than what we are in the process of learning. My D is going into her dr today at 9. We need to check her heart, she has been having palpitations and low BP.I am looking into Veritas in Durham as an option there is also a place called Tapestry in Fletcher nc. My guess is though it will be out of pocket, which I have no clue how to do.Please let me know any and all info you guys may have on Veritas and the treatments. Seriously thank you all!
toothfairy

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Reply with quote  #7 
You are very wise to look into this treatment now.
Low BP and palpitations are a big warning sign.
Is your GP familiar with eating disorders, lots are not.
Please print the guidelines I posted above to ensure the proper tests are cartied out.
Here is a link on how the heart can be compromised.

https://www.edcatalogue.com/cardiovascular-complications-eating-disorders/

__________________
Son,DX with AN, (purging type) age 13 in October 2015 ,  (4 months immediate inpatient) , Then FBT at home since.and making progress every day. He is now in good recovery, and Living life to the full like a normal teen. We are not completely out of the woods yet, but we can see the light at the end of the tunnel, thanks to ATDT. Hoping to get him into full recovery and remission one day at a time.
Kali

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Reply with quote  #8 
Dear flower_medicine,

Welcome to ATDT. While I am sorry that your daughter is ill and you need to join us here, this is a great place to get support and to learn more about how to help your daughter. 

All of us who have responded to your introduction have had our children in either the hospital or a residential treatment center. We know that it is a difficult and scary situation but I don't think any of us have regretted making the decision. In our case, residential treatment was the beginning of my d. working towards remission.  

Please let us know how the doctor's visit goes today.

There is a parent on the board, Hopefulmama, whose daughter was at Veritas and if you search her posts, you can get some feedback about what she thought about the program. Her daughter is recovered and she highly recommends them.

In the US we have a number of different options for levels of care depending on the medical and psychological condition of the sufferer:

Inpatient Hospitalization: When the patient needs medical stabilization in the hospital.

Residential Treatment: The patient lives at a specialized ED facility and there is focus on weight restoration and cessation of behaviors. They meet with therapists, psychiatrists, and nutritionists.

PHP (partial hospitalization): The patient attends a day program 5 days a week where they eat most meals and participate in therapy, and they sleep at home.

IOP (intensive outpatient): The patient attends a program usually 3-4 hours, 3 days a week, where they have some meals and therapy, however, eat most meals at home.

Outpatient: The patient lives at home and has a therapist, nutritionist and if appropriate, a psychiatrist they meet with regularly.

FBT: The patient meets with a specially trained therapist and is weight restored and treated at home.

If finances are an issue there are several options you can look into. Project Heal is an organization, started by two women who are now recovered who met each other in treatment. They offer scholarships for treatment and you can apply for a grant. Here is their website:

http://theprojectheal.org/

Another option would be to look into the program at Columbia in NYC. They are a research unit and in exchange for agreeing to participate in the research, they will treat the sufferer at no cost. The research does not involve drugs, radiation or anything dangerous and they have made important contributions to the treatment of eating disorders. They are a small unit usually with about 10 patients and everything they do is evidence based, which means it is based on positive outcomes from research. Because it does not go through the insurance companies, they can keep someone there for as long as they need to in order to weight restore them and to help them with a reduction of eating disordered behaviors. Here is their website and phone number: (646) 774-8066

https://www.columbiapsychiatry.org/research-clinics/eating-disorders-clinic

Please let us know how it goes. We are here to help support you.

Warmly,

Kali


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Mamaroo

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Reply with quote  #9 
Hi flower medicine,

My d also lived only on ensures for months, so you can refeed with ensures, but it's not ideal. When we were still looking for good treatment, we saw a psychologist who specialised in ED. After a couple of sessions with my d, she told me that she is heading for hospital and that it is not necessarily a bad thing. In fact it was the best thing that could've happened to my daughter. I stayed with her during her 2 weeks stay, even sleeping there and going home everyday to see the rest of the family. My d didn't want to see anybody else. After becoming medically stable, she was released and was refed at home. She didn't follow the mealplan and was given ensures instead, but still required to taste normal food. After several months, we introduced snacks and a couple of months later we replaced the ensures with food. The easiest food to replace the ensures were the ones she tasted before.

Best wishes

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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. Challenging fear foods now.
flower_medicine

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Reply with quote  #10 
D EKG looked OK and we are continuing with ensure drinks 3 times a day when I can get her to do all three... We are looking still for a hospital.Tapestry here takes patients with state insurance on a case to case basis..Veritas does not as far as I can figure..I'm praying for an open door.Her weight was down half a pound since Friday..not to encouraging.
Kali

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Reply with quote  #11 
Hi flowermedicine

Good news that the EKG was ok. However your d. is at a very low weight and I'm wondering how to increase her nutritional intake and I had an idea.

You say she is drinking the ensures. I'm going to assume you are buying the ensure plus with 350 calories, not the regular with 200, right? 

So one option could be to also buy some benecalorie, which has 350 calories in a small container and if you add and mix a container with each 350 calorie ensure plus, each ensure that she drinks will end up having 700 calories and if she drinks 3 that is 2100 calories a day. Benecalorie can be ordered from Walgreens. (Also, the ensures taste much better if they are refrigerated, according to my d.) Eventually, she will need to eat much more, but for the time being the goal might be to get her intake up as much as you can and put a stop to the weight loss.

Also, sometimes there are a few "safe" foods. In my d's case it was cheerios. What were the very last foods you noticed that your d. was able to eat and can you start serving some of them again?

Just trying to throw out a couple of ideas to prevent any further weight loss.

There are also some posts in the ATDT hall of fame post, under "How to Get a Stubborn Anorexic to Eat."

http://atdthalloffame.feast-ed.org/home/advice-for-phase-1-re-feeding/how-to-get-a-stubborn-anorexic-to-eat

Maybe something there might be helpful for you.

If she complains about the ensures, you can make her a smoothie instead. (They taste SO much better!) Here is the basic recipe I used:

Ground up almonds (for protein put these in the blender first and grind, then add other ingredients)
Whole Milk
Full Fat Vanilla Yoghurt
Strawberries
Banana
A teaspoon of honey
A dash of vanilla extract.
Heavy cream

Best wishes,
Kali



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flower_medicine

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Reply with quote  #12 
Thank you so much Kali. All of your advice is great.We have for times been able to do these things
, but she has gotten much more obsessive . If it is a,whole food in any form she refuses it. And the only way I can convince her to drink her ensure with almond milk is if I don't touch it.
We got the referral to Veritas but they may not have a bed so then it's to the UNC center.. any thoughts there? Them plan on if she still is in treatment moving he in October to Tapastry. I need her alive.The thought of her being gone that long seems overwhelming and my heart breaks all the way around.
Kali

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Reply with quote  #13 
flower_medicine,

You are doing the right thing by seeking a higher level of care for your daughter. I understand how hard and heartbreaking it is.

I don't have personal experience with UNC however I do believe that they are very highly regarded. 

You will be able to phone, Skype or Facetime, or visit with her while she is gone and keep in touch like that.
I hope that a bed will become available for her very soon and that she will be able to start treatment. 

My d. was away for 3 months in residential but we kept in close contact with visits, phone calls and had weekly family therapy sessions. I never regret making the decision to bring her to treatment because it was the start of her making progress against the illness, although at the time I was completely out of my mind frightened for her.

Here is a list of some questions parents may want to look into and/or consider asking residential treatment providers, from a newsletter I received today. I think that my most important questions when we were considering which program was the best fit was How the mealtime support and weight restoration were handled, and whether the program used evidence based treatment and measured outcomes in order to make sure that their treatment was effective. I knew that all the practitioners in the program we were considering were very highly qualified and had read their bios, so did not ask them many questions about that. I did ask how many times weekly she would have therapy and meetings with the psychiatrist and nutritionist and what the general daily program would be. I also asked about supervision after eating, since d. had been purging, and they agreed that she could not visit the bathroom for a set amount of time after each meal. They gave her a handout which spelled out their clear expectations about eating and how the calories would increase during weight restoration, so that she knew what was going to happen. They also had a leveling system where patients would win back privileges one level at a time based on how cooperative they were at mealtimes and behaviorally. Here are some more questions:

  • What is your programs’ experience treating eating disorders, and how long has this been an area of specialty for your eating disorder treatment programs?
  • Is your program accredited and licensed, and by whom?
  • What is the age group your program treats?
  • Are there nurses present 24-hours a day on site?
  • What kind of evaluation process will be used in recommending a treatment plan?
  • Does your program have a board certified Adolescent Psychiatrist?
  • How many years of experience does your programs’ Adolescent Psychiatrist and Medical Director have? What are their training and credentials?
  • How many years of experience does your programs’ Clinical Director have? What is their training and credentials? Does the Clinical Director meet with the clients at least weekly?
  • How many years of experience does your programs’ Director of Nutrition Services have? What is their training and credentials?
  • Does the Registered Dietitian provide meal planning, dine with the adolescent, meet individually with the adolescent and provide family coaching?
  • How many adolescents does each Primary Therapist oversee?
  • How does your program measure effectiveness?
  • Do you offer high-frequency individual therapy?
  • What evidence-based treatment modalities does your program offer?
  • What does the educational component look like for my daughter at your program? Are there state-certified teachers overseeing the educational programming?
  • Does your program offer family therapy, coaching and psycho-educational groups in its family programming? How often is family programming offered?
  • How do you collaborate and communicate with the family, outpatient professionals and schools while my child is in treatment with you?
  • What are the setting and milieu like?
  • Do you provide step-down options for when my child is ready for a lower level of care or help to put together a team at home for step-down options if the center is far from home?

Warmly,

Kali

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flower_medicine

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Reply with quote  #14 
Kali thank you again..just knowing you are putting your time into responding back to me is HUGE! I will use your questions and advise . Laura is looking really sickly today so I hope things move forward fast. I'm gonna miss my baby girl.i need her to get better. I'm currently waiting on calls from 2 diff facilities here in NND to see which will be the option...keeping fingers crossed
toothfairy

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Reply with quote  #15 
You may need to take her to ER today if she seems really sickly. Many of us have discovered after taking our kids to hospital that they are much sicker than we realised.
She may need to go today & be medically stableized & tube fed.
Best wishes

__________________
Son,DX with AN, (purging type) age 13 in October 2015 ,  (4 months immediate inpatient) , Then FBT at home since.and making progress every day. He is now in good recovery, and Living life to the full like a normal teen. We are not completely out of the woods yet, but we can see the light at the end of the tunnel, thanks to ATDT. Hoping to get him into full recovery and remission one day at a time.
iHateED

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Reply with quote  #16 
Welcome Flower Medicine although so sorry that you need to be here.  Kali has given you some great advice and things to consider.  I just want to add that even though her doctor said her EKG was ok I would still take her to the emergency room to have her checked for medical stability.  My D was 15 when her illness started.  Her pediatrician was helpful but not that knowledgeable on ED's.   While waiting for our first apt with the specialist, one day I just knew she didn't look right so I took her to our local hospital and went in through the emergency room.  I said I need my D checked out for medical stability.  I thought at most, they might keep her overnight.  She was severely dehydrated and had an irregular heartbeat, even though her EKG they day before said normal.   A hospital stay my also help you and your H regroup and get a plan A and plan B together while she is being cared for and safe. 

Hang in there! 
Kali

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Reply with quote  #17 
Hi flower_medicine,

Toothfairy and IHateEd have given you good advice. If you feel that she looks very sickly, you could take her into the ER. Her vitals can be fine....until they are not. Do you know what her heartrate was yesterday? A normal heartrate is between 60 and 100 and if it less than that her heart may start to be affected. Did the dr. do an orthostatic blood pressure reading (either lying or sitting to standing and then measuring the difference?) Did she have a blood test to check her electrolytes? We cannot give medical advice here however from what you are saying, it seems your d. needs to be carefully monitored until she can get into treatment or into the hospital.

Is it possible for you to take her into the ER at UNC since they do have knowledgeable Drs on staff there who are familiar with eating disorders? 

thinking of you and your d.

Kali

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annabanana

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Reply with quote  #18 
I just want to send a warm hug to everyone who have posted for all the support you're showing--and you flower medicine!  Don't want to take up valuable space but as I read your posts I'm a little emotional....I thank God for you all for your watchful eye and willingness to share your lives with the rest of us!
flower_medicine

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Reply with quote  #19 
D had therapy session and her weight is down over a pound since her last weigh in there last wednesday..her bp sitting is 108/56 and pulse 74. They have a bed coming avaiable at UNC Friday. Still don't know for sure if thats,when she goes in or not.Im calling first thing in am to see. Also thinking taking her into Dr office to have all vitals checked again.
flower_medicine

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Reply with quote  #20 
Quote:
Originally Posted by Kali
Hi flower_medicine,

Toothfairy and IHateEd have given you good advice. If you feel that she looks very sickly, you could take her into the ER. Her vitals can be fine....until they are not. Do you know what her heartrate was yesterday? A normal heartrate is between 60 and 100 and if it less than that her heart may start to be affected. Did the dr. do an orthostatic blood pressure reading (either lying or sitting to standing and then measuring the difference?) Did she have a blood test to check her electrolytes? We cannot give medical advice here however from what you are saying, it seems your d. needs to be carefully monitored until she can get into treatment or into the hospital.

Is it possible for you to take her into the ER at UNC since they do have knowledgeable Drs on staff there who are familiar with eating disorders? 

thinking of you and your d.

Kali
flower_medicine

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Reply with quote  #21 
I'm trying to figure out how to work transportation we have one car down and one driving and a household of 9...plus both me and dad work full time he has benefits which may make is so he has to go with her. Jesus this is hard
eternalhope

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Reply with quote  #22 
Hang in there Flower Medicine. I know it's really scary, especially when you want to get her admitted ASAP, and are waiting for a bed. All of these ladies have posted wonderful advice. If you're at all concerned about how she looks, you should take her to the ER. My 11 year old D needed a higher level of care, and we admitted her to inpatient 7 weeks ago. It was the best thing we ever did, eventhough she is now over a 1000 miles away. She has progressed in so many ways, and we are so hopeful as her treatment continues.
Kali

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Reply with quote  #23 
Dear flower_medicine,

We know how difficult it is and how scary. Do you have family, friends or a faith community who you can call on for help with some of the practical details of your life while you are getting things organized for your ill daughter and getting her into care? 

We somehow find the strength to help our children that we never even knew we were capable of before a crisis unfolded. I can tell you are a very caring and loving person and you will be able to help your daughter. Ask for help if you need it to stay strong and focused for your d.

Let us know how it goes. 

Thinking of you and your daughter.

Kali







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deenl

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Reply with quote  #24 
Hi flower medicine,

I too remember the surreal time of waiting for my son to be admitted. It was the jump start we needed though.

Might I suggest you just pack a bag for your d (with or without her knowledge, whichever is easier). I knew, as did our pediatrician, that my son was so ill and unstable that he had to be admitted but he convinced himself that it was just a check up. Arguing would have stressed everyone and ED would never have been believed it necessary anyway so I just popped a packed bag in the boot.

Wishing you strength
D

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Mother of 13yo son restricting but no body image issues; inpatient 6 wks Sept/Oct 2015 but lost weight! So emotionally destroyed they agreed to let him home to us. Stable but no progress. Medical hosp to kick start recovery for Feb 2016. Slowly and cautiously gaining weight at home and seeing signs of our real kid. Hovering around WR. Mood great, mostly. Building up hour by hour at school after 18 months at home.

2 years since first signs and life is good. Happy, first trip away in years, tons of variety in food, stepping back into social life. 

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] )

flower_medicine

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Reply with quote  #25 
Curious how traumatic was it for your kids to have the feeding tube inserted? I'm considering today to drive her over to the er in Chapel Hill ti get the ball rolling faster if she doesn't drink today.I'll have to only be back here for work by Tuesday.It's a 5 hour drive.They do have a Ronald House which will make things much easier.Also I'm thinking probably the least amount of stay will be 6 weeks...was that may of your experiences as well? At least until Tapestry opens and we can transition her. I have not cried like this since my mom was dying.Thank you all for talking with me and sharing what works for you.It seems there is so much shame surrounding ED. Any of my friends here just gasp and say they are sorry.All well meaning I know but they are at a loss as well.
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