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Eating Disorder Help Please

yennyfire

Ideal_Rock
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My 18 year old niece has been struggling with an eating disorder since April of 2020 (Covid/isolation is what triggered it). She spent 3 weeks in the hospital because her heart rate was dangerously low (and she weighed 90 lbs. at 5’7). She was released from the hospital into an inpatient program here in Atlanta where she spent 8 weeks. Upon release, she was back to an almost healthy weight, but due to Covid, they had been short staffed and there was very little therapy, so she still wasn't mentally healthy.

Fast forward 9 months and she is no better emotionally and loses a pound or so a week. She has been seeing a team of therapists, nutritionist and doctors, all of whom have told my sister that my niece needs in patient care. She is supposed to start her freshman year at Tulane and my sister is desperate to find a good program.

Apparently, many of the "top rated" programs have suffered as a result of Covid and are understaffed or staffed by folks being paid $12/hr with little to no training. Once you’ve checked in, you cannot be released until the staff deems you “ready” and we’ve been reading horror stories, both from staff and former patients. My sister is desperate to find a good place for my niece. Location isn't important. Her preference is for a facility that has a unit for females only and one that focuses on "real life" eating rather than the food being placed in front of the patients (because they aren't learning that way).

Does anyone have a recommendation for a place you've personally had experience with in the past 18 months? Or know someone who has? I'm desperate to help my sister and niece. If you read this far, thank you!!
 
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Hi @yennyfire ...I’m so sorry to hear about your niece‘s condition.
I personally don’t have any experience with eating disorders and don’t know anyone who does, so please take my recommendation with a grain of salt. Wishing your niece a speedy and meaningful recovery...



 
Hi @yennyfire ...I’m so sorry to hear about your niece‘s condition.
I personally don’t have any experience with eating disorders and don’t know anyone who does, so please take my recommendation with a grain of salt. Wishing your niece a speedy and meaningful recovery...




Thanks Maita! I’ll see if there are any on the list we haven’t looked into yet!
 
I don't have any exact therapy locations. I just wanted to say that my sister struggled for a long time with an eating disorder. It is terrifying to see the effects and not really be able to help. I am happy that she is in therapy, that is ultimately what helped my sister more than anything. She did do an outpatient program where she went three days a week. She had to pack her own food, and was required to make sure there were enough fats, carbs, and proteins for the meals. She was recommended against an inpatient for exactly what your sister is wanting to find in a program - it was not a real world scenario. But it seems like your niece may need more help if that is what her doctors recommend. Unfortunately, there is no one size fits all. I hope your sister finds a great fit for your niece. Best of luck to them!
 
I wonder if meal prepping would help her? There are all sorts of groups out there for people who want to prep meals in advance to be healthier. Most people are there to lose weight, but the idea is that you plan each meal of each day, shop for everything you need, and spend a day (depending on what you are doing, a couple of hours to much of the day but most seem to be 3-4 hours) making and portioning all meals and snacks for the next week. Some do it twice a week if they don't have a freezer available. The idea is that you know what is healthy and make it ahead of time so you don't have to take time during the week when you are busy and have go to meals and snacks that are nutritious and planned in the day.

Not suggesting as the permanent solution, but maybe as a way to help her while a good treatment place is found.

Sending her and your entire family hugs and dust that the right option for her is found soon and she can begin her time in college with a healthy mind and body.
 
I'm so sorry to hear about your niece, @yennyfire. I don't have any specific recommendations for treatment programs.

But I just wanted to share that I have a close friend who I went to post-secondary school with. She ended up having to leave the program midway in order to get in-patient treatment, because her eating disorder got so severe. But once she became stronger and healthier, she was able to return to the program and get her degree. She now is working full-time in the same field as me. And she seems happier and healthier than ever.

My point is, I understand she and her family may feel pressured to get her into treatment ASAP so she could hopefully start her freshman year as planned. But finding the right program is soooo important. And like you said, unfortunately the timing is awful due to COVID. Maybe your niece can take a year of leave/absence and delay her matriculation date for now?

Btw, sorry if I overstepped here or have misplaced my concern on the wrong thing!
 
Here are two forums where you may find recommendations:

• NEDA (National Eating Disorders Association)

• Mental Health Forum, subforum Eating Disorders Forum
 
I wonder if meal prepping would help her? There are all sorts of groups out there for people who want to prep meals in advance to be healthier. Most people are there to lose weight, but the idea is that you plan each meal of each day, shop for everything you need, and spend a day (depending on what you are doing, a couple of hours to much of the day but most seem to be 3-4 hours) making and portioning all meals and snacks for the next week. Some do it twice a week if they don't have a freezer available. The idea is that you know what is healthy and make it ahead of time so you don't have to take time during the week when you are busy and have go to meals and snacks that are nutritious and planned in the day.

Not suggesting as the permanent solution, but maybe as a way to help her while a good treatment place is found.

Sending her and your entire family hugs and dust that the right option for her is found soon and she can begin her time in college with a healthy mind and body.

Thanks @TooPatient. That’s kind of what they had been doing and then her care team said she needed to take over making her plates (my sister still cooked and shopped, but my niece was expected to serve herself, etc). As soon as she had any control over what she ate, she started dropping weight every week. She’s at risk of being hospitalized again.
 
Here are two forums where you may find recommendations:

• NEDA (National Eating Disorders Association)

• Mental Health Forum, subforum Eating Disorders Forum

Thank you!!
 
I'm so sorry to hear about your niece, @yennyfire. I don't have any specific recommendations for treatment programs.

But I just wanted to share that I have a close friend who I went to post-secondary school with. She ended up having to leave the program midway in order to get in-patient treatment, because her eating disorder got so severe. But once she became stronger and healthier, she was able to return to the program and get her degree. She now is working full-time in the same field as me. And she seems happier and healthier than ever.

My point is, I understand she and her family may feel pressured to get her into treatment ASAP so she could hopefully start her freshman year as planned. But finding the right program is soooo important. And like you said, unfortunately the timing is awful due to COVID. Maybe your niece can take a year of leave/absence and delay her matriculation date for now?

Btw, sorry if I overstepped here or have misplaced my concern on the wrong thing!

@AnastasiaBeaverhausen you did not overstep at all! Hearing a positive outcome is heartening because there are so many horror stories out there. My niece is past the date to defer a year (they looked into it), so the hope is that they can find the right place, the wait list to get in isn’t too long and that maybe, just maybe, she can start her freshman year as planned. I’ve been pushing my sister for a couple of months to find a treatment program, but it’s complicated because she turned 18 on 5/11 so she has to go to an adult facility, but they wouldn’t even put her on the waitlists til she turned 18.
 
I'd also be one to suggest that getting healthy should happen before going off to school where she will not have family keeping a watch over her during the early phase of recovery. A gap year to work on her mental health, ED recovery and then engaging in meaningful activities like volunteering would do a world of good and would set her up better for long-term success and recovery. When you're in a calorie deprived state your mental ability to keep up in school is really impacted, from a physiological standpoint and from a mental health/preoccupation with ED standpoint. Refeeding and gaining/maintaining weight are important of course but getting a good mental health counseling team with appropriate interventions (like CBT, etc. depending on the person), meds/counselnig for underlying issues (anxiety, depression, etc.) is really key to change those damaging and dangerous throught processes. And to learn and successfully implement new, healthy coping strategies.
 
I don't have any suggestions or advice, I'm sorry. Just wanted to offer a ::HUG::. Such a difficult time for your niece and everyone who loves her - I will be hoping for successful treatment and lasting recovery ❤️
 
So sorry to hear this. ED consultant that can help navigate is I. Newhall.
 
I am so sorry to hear this @yennyfire. This is a serious condition that is often relapsing/remitting, as you know all too well. As several others have mentioned, it's important to treat the underlying mental health condition. Please encourage her family to stick with evidence-based programs offered through university affiliated hospitals. An example is the well-established program offered through the University of Iowa: https://uihc.org/eating-disorder-program
 
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I'd also be one to suggest that getting healthy should happen before going off to school where she will not have family keeping a watch over her during the early phase of recovery. A gap year to work on her mental health, ED recovery and then engaging in meaningful activities like volunteering would do a world of good and would set her up better for long-term success and recovery. When you're in a calorie deprived state your mental ability to keep up in school is really impacted, from a physiological standpoint and from a mental health/preoccupation with ED standpoint. Refeeding and gaining/maintaining weight are important of course but getting a good mental health counseling team with appropriate interventions (like CBT, etc. depending on the person), meds/counselnig for underlying issues (anxiety, depression, etc.) is really key to change those damaging and dangerous throught processes. And to learn and successfully implement new, healthy coping strategies.

Thanks @FL_runner. You sound like you know a lot about this and I appreciate your advice. I agree completely that there are underlying issues that must be addressed before the ED can be properly dealt with. It’s so hard to find the right team of people to support them through this and of course, they don’t want to bounce around, but it’s been a challenge to find the right people and then it’s taking quite a bit of time for my niece to “let them in”. A gap year might be good if she could do something meaningful and fulfilling rather than working a few hours a week (which is what she’s doing now).
 
So sorry to hear this. ED consultant that can help navigate is I. Newhall.

Thanks @bling_dream19. I’m not trying to pry but do you or someone you know well, know this consultant? Trying to find personal recommendations from someone who’s had interaction with the Recc’d person recently.
 
I am so sorry to hear this @yennyfire. This is a serious condition that is often relapsing/remitting, as you know all too well. As several others have mentioned, it's important to treat the underlying mental health condition. Please encourage her family to stick with evidence-based programs offered through university affiliated hospitals. An example is the well-established program offered through the University of Iowa: https://uihc.org/eating-disorder-program

Thanks @Lula. I will look into the program at Iowa and similar to those.
 
@yennyfire I’m so sorry. I am in a mad dash at the moment and haven’t read any of the replies but I highly recommend this center.

 
@yennyfire I’m so sorry. I am in a mad dash at the moment and haven’t read any of the replies but I highly recommend this center.


Thanks @missy. Is this recommendation based on recent knowledge? Covid and being bought out by large conglomerates has really changed a lot of these programs. Thank you!!
 
Thanks @missy. Is this recommendation based on recent knowledge? Covid and being bought out by large conglomerates has really changed a lot of these programs. Thank you!!

Covid has changed many things. I would reach out and call them. If anyone can help your niece they can and it’s worth reaching out to them. Again I am so sorry Jenn but know your niece can get healthy. I’ve seen this up close and personal and while it is a life long challenge there’s definitely a healthy way forward. Gentle hugs to you and all the best to your niece and family.
 
Thanks @bling_dream19. I’m not trying to pry but do you or someone you know well, know this consultant? Trying to find personal recommendations from someone who’s had interaction with the Recc’d person recently.

I've met her once and was very impressed. She has a long history helping families get the right care for their loved one.
And I agree that Renfrew is an excellent center.
 
Thanks @Lula. I will look into the program at Iowa and similar to those.

You're very welcome, @yennyfire. With regard to the recommendations for private clinics: I don't mean to disparage the private clinics recommended here, because some of them may have good success rates. Something to keep in mind, though, with private treatment facilities -- whether they be for ED or for other conditions -- is that their treatment modalities are proprietary. This means they do not subject them to peer-reviewed research which is published in peer-reviewed journals. Which in turn means there's no objective way to determine if the clinic actually delivers the results it says it does -- you just have to take their word for it. Make sure your niece's family checks the credentials of the founders/owners, the board, and the staff. What is their background and training? Private clinics are expensive; what are you paying for? Seclusion? Country club facilities? A private hospital staffed with health care professionals who can provide emergency care if your niece takes a sudden turn for the worse? Are they accredited by an outside, independent accrediting body? The staff of any ED clinic should employ trained and credentialed healthcare professionals -- MDs, psychiatrists/psychologists, counselors, social workers, nurses, nutritionists, CNAs, etc. At a minimum, any clinic your niece considers should provide ongoing monitoring of her physical/mental condition and have a plan in place for getting her to a hospital if she experiences a serious, life-threatening condition, such as a cardiac event or suicidal ideation. The longer the ED has been an issue, the more likely the individual will have compromised physical functioning, in particular, impaired heart function. My hope is that private clinics who do not have the staff to monitor high-risk patients would screen these patients out, not admit them, and refer them to a hospital-based setting. I don't mean to alarm you, but I don't take ED lightly, having lost several friends to EDs.
More info: https://www.nytimes.com/2016/03/15/health/eating-disorders-anorexia-bulimia-treatment-centers.html
 
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You're very welcome, @yennyfire. With regard to the recommendations for private clinics: I don't mean to disparage the private clinics recommended here, because some of them may have good success rates. Something to keep in mind, though, with private treatment facilities -- whether they be for ED or for other conditions -- is that their treatment modalities are proprietary. This means they do not subject them to peer-reviewed research which is published in peer-reviewed journals. Which in turn means there's no objective way to determine if the clinic actually delivers the results it says it does -- you just have to take their word for it. Make sure your niece's family checks the credentials of the founders/owners, the board, and the staff. What is their background and training? Private clinics are expensive; what are you paying for? Seclusion? Country club facilities? A private hospital staffed with health care professionals who can provide emergency care if your niece takes a sudden turn for the worse? Are they accredited by an outside, independent accrediting body? The staff of any ED clinic should employ trained and credentialed healthcare professionals -- MDs, psychiatrists/psychologists, counselors, social workers, nurses, nutritionists, CNAs, etc. At a minimum, any clinic your niece considers should provide ongoing monitoring of her physical/mental condition and have a plan in place for getting her to a hospital if she experiences a serious, life-threatening condition, such as a cardiac event or suicidal ideation. The longer the ED has been an issue, the more likely the individual will have compromised physical functioning, in particular, impaired heart function. My hope is that private clinics who do not have the staff to monitor high-risk patients would screen these patients out, not admit them, and refer them to a hospital-based setting. I don't mean to alarm you, but I don't take ED lightly, having lost several friends to EDs.
More info: https://www.nytimes.com/2016/03/15/health/eating-disorders-anorexia-bulimia-treatment-centers.html

Thanks @Lula. Those are very good points to consider, thank you.
 
OK...here I go. I began having an eating disorder when I was around 16. I was bulimic. It would come and go, but things got really bad after I graduated college. My eating disorder didn't care where I was: fancy Beverly Hills restaurant or a friend's house, I acted upon it. I reached a point where my thinking and memory were affected and I knew my body couldn't take much more. It's about control and self-image. Life is crazy and the disorder provides the individual with control. It also makes you nice and skinny, so you think you are a better person. It is a lifelong disorder. It's always at the back of my mind.

She will need intense therapy to get to the root of the problem. She'll need meds. She can portion her food, but if the beast is in her head, it won't give a sh*t about food portions, who says what to her, nor will it make her think rationally. If she goes to college, the stress and complete lack of control the environment presents will not help her. She needs to get a handle on it now and think about college after. It's all about baby steps. One small goal at a time. Therapy sucks, but she has to stick with it, and she'll most likely need it regularly (every couple months or so) for years. I say that because the anxiety/depression/OCD,etc. can pop-up and manifest themselves way down the line due to school, work, family, etc.

I'm a trauma counselor, and I have seen young women die from this. I'm talking about their actual dead bodies. I can still hear the dad screaming when his 15 y/o daughter died from one. She had a heart attack one night. It was about 12 years ago and I can still hear him.

NAMI is a great resource for mental health. https://nami.org/About-Mental-Illness/Mental-Health-Conditions/Eating-Disorders

I also would look at social services in your community and call them to see if they can recommend a facility. I'm taking about community centers, universities (psych dept, medical school, or student health), religious groups, high school or school district, etc. Out here the Islamic center has a huge amount of information, and people can dial 211 for information on services, plus there is a wealth of resources online on county sites. Also, be sure to check the laws in the state where she will be and if the stay/discharge are voluntary or involuntary.

My best to all of your family. This is a struggle, but she'll need support and understanding. NO judgment or guilting allowed, hard as it is.
 
OK...here I go. I began having an eating disorder when I was around 16. I was bulimic. It would come and go, but things got really bad after I graduated college. My eating disorder didn't care where I was: fancy Beverly Hills restaurant or a friend's house, I acted upon it. I reached a point where my thinking and memory were affected and I knew my body couldn't take much more. It's about control and self-image. Life is crazy and the disorder provides the individual with control. It also makes you nice and skinny, so you think you are a better person. It is a lifelong disorder. It's always at the back of my mind.

She will need intense therapy to get to the root of the problem. She'll need meds. She can portion her food, but if the beast is in her head, it won't give a sh*t about food portions, who says what to her, nor will it make her think rationally. If she goes to college, the stress and complete lack of control the environment presents will not help her. She needs to get a handle on it now and think about college after. It's all about baby steps. One small goal at a time. Therapy sucks, but she has to stick with it, and she'll most likely need it regularly (every couple months or so) for years. I say that because the anxiety/depression/OCD,etc. can pop-up and manifest themselves way down the line due to school, work, family, etc.

I'm a trauma counselor, and I have seen young women die from this. I'm talking about their actual dead bodies. I can still hear the dad screaming when his 15 y/o daughter died from one. She had a heart attack one night. It was about 12 years ago and I can still hear him.

NAMI is a great resource for mental health. https://nami.org/About-Mental-Illness/Mental-Health-Conditions/Eating-Disorders

I also would look at social services in your community and call them to see if they can recommend a facility. I'm taking about community centers, universities (psych dept, medical school, or student health), religious groups, high school or school district, etc. Out here the Islamic center has a huge amount of information, and people can dial 211 for information on services, plus there is a wealth of resources online on county sites. Also, be sure to check the laws in the state where she will be and if the stay/discharge are voluntary or involuntary.

My best to all of your family. This is a struggle, but she'll need support and understanding. NO judgment or guilting allowed, hard as it is.

Thank you for sharing your story. FWIW, I'm glad you're in recovery and are here with us :)
 
Huge hugs to your niece!
 
OK...here I go. I began having an eating disorder when I was around 16. I was bulimic. It would come and go, but things got really bad after I graduated college. My eating disorder didn't care where I was: fancy Beverly Hills restaurant or a friend's house, I acted upon it. I reached a point where my thinking and memory were affected and I knew my body couldn't take much more. It's about control and self-image. Life is crazy and the disorder provides the individual with control. It also makes you nice and skinny, so you think you are a better person. It is a lifelong disorder. It's always at the back of my mind.

She will need intense therapy to get to the root of the problem. She'll need meds. She can portion her food, but if the beast is in her head, it won't give a sh*t about food portions, who says what to her, nor will it make her think rationally. If she goes to college, the stress and complete lack of control the environment presents will not help her. She needs to get a handle on it now and think about college after. It's all about baby steps. One small goal at a time. Therapy sucks, but she has to stick with it, and she'll most likely need it regularly (every couple months or so) for years. I say that because the anxiety/depression/OCD,etc. can pop-up and manifest themselves way down the line due to school, work, family, etc.

I'm a trauma counselor, and I have seen young women die from this. I'm talking about their actual dead bodies. I can still hear the dad screaming when his 15 y/o daughter died from one. She had a heart attack one night. It was about 12 years ago and I can still hear him.

NAMI is a great resource for mental health. https://nami.org/About-Mental-Illness/Mental-Health-Conditions/Eating-Disorders

I also would look at social services in your community and call them to see if they can recommend a facility. I'm taking about community centers, universities (psych dept, medical school, or student health), religious groups, high school or school district, etc. Out here the Islamic center has a huge amount of information, and people can dial 211 for information on services, plus there is a wealth of resources online on county sites. Also, be sure to check the laws in the state where she will be and if the stay/discharge are voluntary or involuntary.

My best to all of your family. This is a struggle, but she'll need support and understanding. NO judgment or guilting allowed, hard as it is.

Thank you for being courageous enough to share your story @PinkAndBlueBling. I too, am glad that you’ve conquered the beast, though I know from personal experience that it never goes away. I appreciate all of your thoughts and suggestions. It’s paralyzing, trying to discern which programs are best (because the websites all look good)...it’s when you go digging that you find the truth, which has been frightening. My sister has joined a support group, which in some ways has been good, but it’s also opened her eyes to the fact that this is going to be a lifelong struggle, which is heartbreaking. From the bottom of my heart, thank you for your guidance and support.
 
My eating disorder started when I was 16 and I started true recovery in mid 2018 when I was 28, so for 13 years I dealt with this. I suffered from anorexia mostly but also made myself purge quite frequently and was obsessed with exercise. I tried to get better here and there always telling myself I would, but I never truly tried until 2018 after I got married. I still struggle with ED related things but its drastically lesser and I am weight restored.

I never went to treatment since I was an adult by then so my mom couldn't force me. I truly don't think that going to an in patient center would've helped me personally. I think a lot of those places as well as therapists can do more harm than good, but definitely not all of them! Weight restoration comes fast, but she must neurally rewire her brain.

The thing that changed my life and really clicked for me and made me start recovering, was finding a woman named Tabitha Farrar who has recovered from an ED. I stumbled across her blog and subsequently through her blog, youtube videos, and book, recovered by myself. Recovering by yourself is hard, and I'm not necessarily recommending it, I'm just sharing what helped me. I would highly suggest giving your niece and/or sister any of the following to glean any information that might be helpful. Tabitha herself offers coaching as well, thought it seems like your sister would rather an in patient treatment center. The last link is just such. Recovery isn't one size fits all but I hope maybe these would help in some capacity. Sending good thoughts her way!

I know you would think how in the world could information from a blog help such a severematter, but at 55 lbs it was the thing that truly saved my life :)



 
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