User’s Guide | Rules | Contact a Moderator | Registration or Login Problems? | Eating Disorders Learning Center | F.E.A.S.T.



Custom Search of F.E.A.S.T. and Forum Content:
Register Latest Topics
 
 
 


Reply
  Author   Comment   Page 1 of 2      1   2   Next
j9k22

Caregiver
Registered:
Posts: 15
Reply with quote  #1 
I didn't realize it at the time but my daughter developed an eating disorder back when she was in 7th grade. that was four years ago now. I didn't realize until last year that one does not quite recover from an eating disorder. Without treatment, I thought my daughter had recovered. a friend pointed out the fact that she didn't have her period for a year, that that was a problem. I put pressure on my daughter and she got her period back. Thought she had recovered. Then at some point in the future I found laxatives. she said She just tried it but she wouldn't do it again. Then a few months later I found laxatives again. it was at this time that I sought out a therapist the therapist hook us up with a nutritionist and also a doctor. but then I thought my daughter was getting better. I didn't care for the fact that the nutritionist and the doctor did not respect our veganism. we kept missing therapy appointments because we had so much going on. her pediatrician a year-and-a-half ago recommended and outpatient program but our insurance doesn't cover any of that. my daughter is now in 11th grade and this year is crucial to getting into a good college. there really is no good time to address this eating disorder Stuff. I'm scared for my daughter. I think that once she turns 18 I will have no say in her medical care. I feel like I only have one year left to address all of this. I don't know if I've been in denial or I truly thought she was getting better and everything was going to be okay. but we seem to continue to arrive to the same spot where I feel a sense of urgency to address her eating disorder, or like I've just woken up to the fact that she's had one for the last 4 years. but running to Dr an hour away because there isn't much where we live, running around to see therapist, or the thought of putting her in an inpatient program while she's in the most crucial year of her life, just can't afford the latter. If her Junior and Senior year of high school were to be interrupted by placement in a treatment program that would be extremely detrimental to her future. I'm so scared and so overwhelmed and so pissed off that this is happening. I don't know where to turn to for help. Right now she's at a place where she hasn't had her period for the last several months. I threatened not to have a birthday party for her next month, in the hopes to get her to eat enough to get her period. She cries that I don't appreciate how hard she's working. When I tell her how serious it is what she's doing she says she's not as bad as some with eating disorders. When I say she should probably go into a treatment center she says no way she's not as sick as the people that are there. I tell her how bad it is that she hasn't had her. She says a lot of her friends don't get there. Regularly. I say I'm not talking about them I'm talking about you.
atdt31_US

Caregiver
Registered:
Posts: 406
Reply with quote  #2 
Hi j9:

Sorry for the rollercoaster you've been on.  Others will chime in with some suggestions, but to help them get right to the most helpful stuff, can you fill in a couple gaps:

1.  How do you date the ED back to 7th Grade?  Do you have growth charts such that you can track where she was on the weight and/or bmi curve from at least 4 or 5th grade until now (back to birth would be ideal)?  Height curve also useful if you have it, as failure to track a smooth height arc can be an indicator of restriction, sometimes before you see other signs.  If you are able to access those growth charts, viewing them might confirm 12 years old as the start of a decline -- or might show some other point where things actually started to go south or even stagnate.  This is an important piece of the puzzle because it is helpful to know where she was on the growth charts for the year or two before she became symptomatic as that will be a good predictor of an initial goal for weight gain.  That is:  if she was at the 60% weight for age from 3 years of age to 12 years of age and then started a trend down to the 35% weight for age (for example), you will know you likely need to get her back to at least the 60% to start to see true healing (and it will need to hold at that percentile or maybe higher for a year or more to let her brain get all the way back).  Getting her period back, in other words, is likely a false stopping point in weight restoration.

2. Where do you live?  Country and region is probably enough detail if you don't want to give city -- sometimes people can point you directly to tried and true providers if they know where you live (or whom to avoid).

In the meantime, we all know where you are coming from in terms of there never being a great time to stop life to address this as head-on as is probably necessary ---- but I think most here will say the sooner the better, in part because once she hits 18 (in most US states) you lose significant leverage to get to direct her health care.  

Ask lots of questions here, and also fill in some of that info if you get a chance ...

__________________
Mom of either pre-diagnosis or non-ed underweight 12 yoa (as of March 2018) kid here to learn how to achieve weight gain.  BMI steadily in the mid 12's for nearly her entire life.  Born 2006. UPDATE:  April 2018 diagnosed ARFID, I believe, based solely on weight being less than 75% of Ideal Body Weight (not sure if he also considered low bone density to be a significant nutritional deficiency - not positive he knew her bmd).
atdt31_US

Caregiver
Registered:
Posts: 406
Reply with quote  #3 
Sound like you have been at this for a few years, but if you have not already found it, the Kartini Clinic website has tons of good info about things like setting an initial target weight and other areas that might be of interest.  Here are few links to get you started:

https://www.kartiniclinic.com/blog/post/beyond-weight-restoration-more-measures-of-healing/

https://www.kartiniclinic.com/blog/post/determining-ideal-body-weight/

https://www.kartiniclinic.com/blog/post/health-is-a-state-not-a-weight/

__________________
Mom of either pre-diagnosis or non-ed underweight 12 yoa (as of March 2018) kid here to learn how to achieve weight gain.  BMI steadily in the mid 12's for nearly her entire life.  Born 2006. UPDATE:  April 2018 diagnosed ARFID, I believe, based solely on weight being less than 75% of Ideal Body Weight (not sure if he also considered low bone density to be a significant nutritional deficiency - not positive he knew her bmd).
j9k22

Caregiver
Registered:
Posts: 15
Reply with quote  #4 
Around this time four years ago when my daughter was in 7th grade she lost 20 lb in a very short amount of time. She admits that she stopped eating so that she could lose the weight. One of the pediatrician in the group that we go to pointed this out. They were concerned that she was developing an eating disorder. For some reason I was resistant to that idea. I can't exactly remember though. It's been a struggle for me to realize how serious this is for some reason. Maybe I'm quick to listen to my daughter who says that she's got it under control, I'm not sure.

That's interesting information that you give of Arrow looking at her growth chart to get an idea of what her normal used to be before this started. No one ever said this to me before. But I have 13 months before she turns 18, so I hope I can make some serious changes or begin to make some changes for her before that time. She is very stubborn and resistant to any kind of treatment what so ever.

I live in New York state. Dutchess County a little over an hour north of New York City. My daughter is diagnosed on her chart at the pediatrician's office is having an eating disorder. We've seen nutritionist that my daughter does seem to like. They were giving us a hard time about not eating dairy and that kind of made me mad so we stopped going to see the nutritionist and we also stopped seeing the doctor down in Westchester. I kind of told her off when she told me it was damaging for us to eliminate Dairy from our diet. Anyway, I do regret no longer going to see them. I guess it just got really hectic last spring and then we got really busy over the summer and we just stopped going. And then fall is extremely busy with my daughter being on the swim team.

Torie

Avatar / Picture

Caregiver
Registered:
Posts: 4,915
Reply with quote  #5 
Quote:
Originally Posted by j9k22
there really is no good time to address this eating disorder Stuff.


So true.  It really sucks.

However, there's also no good time to postpone addressing the eating disorder.

Quote:
Originally Posted by j9k22
 If her Junior and Senior year of high school were to be interrupted by placement in a treatment program that would be extremely detrimental to her future.  


Honestly, the best thing for her future may well include placement in a treatment center during these crucial high school years because the most important thing - by far - is getting her back to health.  I'm assuming you are in the US, and if so, we are lucky that university and even high school can be interrupted / postponed with many opportunities to get back on track later.  A number of people here have pulled their ED-kid from school during those years and view it as a very wise decision.  Hopefulmama is one - you could look up her old posts or drop her a line off forum if you'd like to hear her story.

University is tough (especially freshman year), even for kids who are in tip top shape.  I would urge you to make sure your d is in robustly good health (mental and physical) before thinking of university.  It is a great motivator for many.

As hard an unappealing as it is to tackle this now, it really is your best chance.  Please believe me that you will not regret it if you take whatever steps are necessary to rescue your precious d from this monstrous illness.

Please feel free to ask all the questions you like.  I hope you will stay with us.  xx

-Torie

__________________
"We are angels of hope, of healing, and of light. Darkness flees from us." -YP 
j9k22

Caregiver
Registered:
Posts: 15
Reply with quote  #6 
Thank you Torie and everyone who has replied so far. I am so scared. I don't know what to do or where to turn. I dont have anyone to talk to about this and I am so glad I found this forum. Going to bed now because I have to get up early for work but I look forward to any support and advice you all can give.

I'm terrified of the thought of interrupting my daughter's school. Is it really necessary. See the dietician has suggested that my daughter isn't that bad. But then the counselor my daughter saw a few times thought my dauggter should go into an inpatient treatment program. I was not receptive to that. My boss at work has a daughter with an ED. He said that putting someone with ED in an inpatient treatment facility is a last resort because the person can come out worse off then when they went in. I don't know. Is that true? So scared.
Torie

Avatar / Picture

Caregiver
Registered:
Posts: 4,915
Reply with quote  #7 
Quote:
Originally Posted by j9k22
I am so scared.


It is indeed scary.  Terrifying, really.  

I don't know if your d needs IP or not, but I do know that we can help you figure that out.  If she needs IP, well, that sucks, but you have to do what you have to do.  Which, right now, is getting some rest.

You've come to the right place.  This forum saved my d (and my sanity) and is the best place for information and support.  We're here for you.

Hang in there. xx

-Torie

__________________
"We are angels of hope, of healing, and of light. Darkness flees from us." -YP 
j9k22

Caregiver
Registered:
Posts: 15
Reply with quote  #8 
I am wondering how you can help me to figure out if my d needs IP? I am thinking my first step is to call the pediatrician to get an idea of her numbers. Also or after the pediatrician, call the nutritionist and get an appointment. Maybe try and go back to the Dr in Westchester. She had us go get a bone scan because she was afraid that my daughter's bones were in danger of having fractures due to cutting out Dairy. I know that's not necessarily the case. That's such misinformation. But anyway we did go get the bone scan done but never went back for the follow-up results.
atdt31_US

Caregiver
Registered:
Posts: 406
Reply with quote  #9 
Breathe.  It will be okay.  This is a scary, exhausting journey, but YOU CAN DO IT.  Don't panic.  Read around here.  A lot.  There is a ton of info that will start to refocus you on prioritizing what you will need to do for your d's situation.  Each family/kid/situation is a little different, but it is almost universal that Job One is restoring the kid to the proper weight based on her history.  Get those charts - you are in the US so the pediatrician very likely has a growth chart or at least data you can use to plot on a growth chart at mygrowthcharts.com.

Get sleep tonight.  Read when you can.  Know that what your co-worker said can be true, or false.  All depends on the facility and, to a lesser degree, your kid.  There are great facilities that dedicate a great deal of time in addressing your very situation.  

You have not given us any idea of how much below her own historic curve she is -- she lost 20 pounds four years ago.  In those four years she should have gained weight over that original weight (figuring 4 pounds per year, just as a for example, she should weigh 36 pounds more than what she weighed after losing that 20 pounds -- at a minimum) (NOTE, her growth chart will speak more clearly to her target weight). So she depending on how much of that 20 pounds she has gained back, she could be close to, or far from, her target weight.  Note that the initial target weight is based on her historic curve, but may prove to be a low target -- sometimes kids need to get a bit above their old curve to really heal.  DO NOT let those numbers scare you.  

There is a lot of treatment that can be done at home, but given your short window that she is a minor, as well as the length of time she has been to some degree gripped by her ED, you may want to explore the most efficient and intense treatment available to really set you on the best path.  

In your shoes I think I would read a ton on here.  Then I'd try to put aside my fears and address what you KNOW is the issue -- she has a restrictive eating disorder and needs help to overcome it.  There is a one week intensive family program that would confirm diagnosis and provide you and your d (and whole family) tools to combat the ED. From what I read, it is intense, but highly educational and based in the most reliable science about how to treat an ED (which may or may not be the same approach your co-workers d had access to).  When you leave the one week program, you will leave with an understanding of what this is like from your d's perspective (it is not her choice), as well as a head's up of what to expect going forward as you carry on therapy at home.  Of great help to families with kids the age of your d, you will also leave with a contract that you and your family including your d, creates under the close guidance of professionals who have dedicated years to this type of treatment -- so when you get home you and your d know things like:  what you need to serve and what the consequence is if she does not eat it, and things like that.  The program is through UCSD Intensive Family Program -- you can search for UCSD on this website and see reviews and pros/cons of the facility.

 I am not saying that is the answer for you, but I am saying that if you really believe the diagnosis of Restrictive Anorexia Nervosa (RAN) is correct, you are in a good position now to address it head on.  This forum can help.  You can do this.  Sleep tonight.  Read when you can.  Do not try to strategize with your d on this -- get yourself up to speed on your role (provide food and require it go in and stay in) and move forward to get her as well as possible before she turns 18.  Salvaging her senior year of high school will be a meaningless reward if she fails her freshman year at college because she is still not properly weight-restored and has not tools or plans to maintain her weight.  

That does not mean you will have to sacrifice her high school years, but it might mean you should consider that a viable option if necessary. 

Stay here and read.  There are tons of success stories.  And I'm not going to lie, there are stories on here that are scary and show the length of the journey to health, some with relapses, etc.  But overall, this forum can help you help her in the most efficient and lasting way.  
 

__________________
Mom of either pre-diagnosis or non-ed underweight 12 yoa (as of March 2018) kid here to learn how to achieve weight gain.  BMI steadily in the mid 12's for nearly her entire life.  Born 2006. UPDATE:  April 2018 diagnosed ARFID, I believe, based solely on weight being less than 75% of Ideal Body Weight (not sure if he also considered low bone density to be a significant nutritional deficiency - not positive he knew her bmd).
atdt31_US

Caregiver
Registered:
Posts: 406
Reply with quote  #10 
Quote:
Originally Posted by j9k22
I am wondering how you can help me to figure out if my d needs IP? I am thinking my first step is to call the pediatrician to get an idea of her numbers. Also or after the pediatrician, call the nutritionist and get an appointment. Maybe try and go back to the Dr in Westchester. She had us go get a bone scan because she was afraid that my daughter's bones were in danger of having fractures due to cutting out Dairy. I know that's not necessarily the case. That's such misinformation. But anyway we did go get the bone scan done but never went back for the follow-up results.


Yep, get that info if you can.  You want the growth charts and bone scan results if possible.  I would not worry too much about the nutritionist at this moment but only you know if that is what would help you.  If you do go to the nutritionist, consider going alone -- your d's input may cloud the conversation that needs to be had.  If this is a nutritionist up to speed on Ed treatment, I would hope she would talk with you and help you in your role as provider of food and leave your d out of it, your d's role is eater of food you provide.  People can refeed their kid without dairy and if this is a longstanding family decision so be it. Many here rely heavily on dairy but the goal is calories, through a good balance of protein, carbohydrates, and fat (lots of fat) so your d can rebuild from the inside out.  MANY people do this without a nutritionist:  a good one can be a very helpful ally for the parent; a bad one can actually be detrimental.  

If you want to share, give us an idea of her highest weight percentile; whether her height curve is smooth; and how she responds if you ask her to finish her plate if she has stopped eating prematurely.  Those sorts of answers will help people understand a bit more about where you guys are.  Also, if she has any symptoms like thinning hair; cold hands/feet; fatigue; dizziness; does she keep up with her peers; does she exercise more now than she used to and if so, is it for joy or to off-set caloric intake; does she talk about body image; does she have anxiety.  The fact that your Pediatrician sent her for a bone scan makes me wonder if she had some of these sorts of physical symptoms ... or maybe your ped was a bit more assertive than some (which is a good thing imo).

So consider reading reading reading around here to formulate an idea of if you want to pursue this type of refeeding (parent in charge of food; kid eats what given) and if so, you can take that to the nutritionist and see if that is an approach they can assist in.  



__________________
Mom of either pre-diagnosis or non-ed underweight 12 yoa (as of March 2018) kid here to learn how to achieve weight gain.  BMI steadily in the mid 12's for nearly her entire life.  Born 2006. UPDATE:  April 2018 diagnosed ARFID, I believe, based solely on weight being less than 75% of Ideal Body Weight (not sure if he also considered low bone density to be a significant nutritional deficiency - not positive he knew her bmd).
EDAction

Caregiver
Registered:
Posts: 408
Reply with quote  #11 
Hi j9k22,

You've asked how you can determine if your D needs IP.  I think the fastest way to do so is to call one or two of the treatment centers that is highly regarded on this forum and spend time talking to one of their intake people.  (It is important to contact a center that treats based on up to date research.)  They will ask a lot of questions and give you their opinion of what level of care your D requires.  Try the eating disorders program at UCSD (Univ of California San Diego), Center for Balanced Living (Columbus, OH), Kartini Clinic (Portland, OR) or Childrens Hospital of Philadelphia (Dr. Rebecka Peebles).  I'm sure other forum members will add the names of other reputable treatment centers.  

Thinking of you.



__________________
DD diagnosed with anorexia at 14; FBT at home with the help of psychologist and medical dr; 3+ years later and doing well (knock on wood)
Torie

Avatar / Picture

Caregiver
Registered:
Posts: 4,915
Reply with quote  #12 
Quote:
Originally Posted by j9k22
I am wondering how you can help me to figure out if my d needs IP?


The concept is simple, but the execution is a bear:  Your d needs to regain the weight she has lost plus at least a few pounds for each year she hasn't been gaining.  If this can happen at home, she can stay home.  If it can't happen at home, she will need a higher level of care.  The exception is if she becomes medically unstable in which case of course she will be hospitalized immediately.

It sounds like your d needs to be in treatment, whether in your home or away.  Many here have essentially turned our homes into a miniature treatment center (with a single patient and one or two caregivers), which is exhausting, time-consuming, and emotionally draining.  Many others here have found that the best option for them involves an IP stay.  Either way, it is a tough journey for all involved.

As atdt31 said, UCSD has a one-week intensive program that many have found very hful.  Several forum members have said that they are generous with their time if you call to try to figure out if they would be a good fit.  And as atdt suggested, it is generally unhelpful to discuss disordered eating with the sufferer.  Sort of by definition, they are irrational about all things ED: weight size shape calories medical state etc.  Rational arguments just don't work with irrational people.

Many here have children who are academic stars in families that put a premium on education.  And yet.  It's a little like getting a cancer diagnosis: everything else is secondary to health.  Anorexia is the deadliest of mental illnesses with mortality rates comparable to many childhood cancers.  

I think you said you didn't yet receive the results from the bone scan.  Many AN sufferers develop osteopenia or osteoporosis so it is important to make sure bone density is not compromised.

I'm so sorry I don't have cheerier news and options.  I wish I did.  But please know that we are with you in spirit as you fight to bring your d back to health. xx

-Torie

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

Avatar / Picture

Lead Moderator
Registered:
Posts: 3,589
Reply with quote  #13 
Welcome to the forum. Sorry that you have had to find your way here after 4 years of partial treatment. 
As others have said there are lots of ways of deciding what level of treatment your daughter needs for her ED. It is important to remember there is no one way to decide this, with the absolute imperative that if she is life-threateningly ill she requires hospitalisation. Eating disorders have the highest mortality of any mental illness and have marked effects on quality of life and long term health. It is essential that your daughter is treated. 

Treatment includes full nutritional rehabilitation - regaining weight and all nutrients that have been in deficit
Normalising food and eating behaviours
Working on eating disorder thoughts and associated mental health concerns eg. anxiety, depression, OCD. 

How those things are done in part depends on your daughter's ability to engage in her care. Her acknowledgement that there is an issue. Your ability to assist her. The presence of other issues. 

I would suggest reading widely around the forum. There is lots of info at the Learning Center 

Given your family is vegan you will need to seriously consider the implications this has for your D. Veganism is a dietary choice which excludes a large range of foods and it is easy to have micronutrient deficits because of this. It is often very hard for people to recover from their eating disorder whilst being vegan and the dietary restrictions that accompany this choice are often the first startings of an eating disorder. Your daughter is likely to need to eat a lot of nutrient dense foods to recover and this again can be much more difficult. It is for this reason that many nutritionists will recommend moving to at least a vegetarian diet. It is possible to eat a very ethical vegetarian diet if that is your concern. 



__________________
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.
tina72

Caregiver
Registered:
Posts: 1,116
Reply with quote  #14 
Hi j9k22,
a very warm welcome from Germany. I know how desperate you feel now but finding this forum is the best help you can get at the moment. It is a life-saver.
The first step is to realise that your d has a problem and that it won´t go away without help. You got this.
Your d will not see that she is ill because that is part of the disease. AN makes a bodydysmorphia. They think they are fat although they are starved to death. That is totally normal and your d doesn´t need to want to have help or see that she is sick. She only needs to eat. Refeeding is the only way to recovery.
So you need help to get her to eat and to have full nutrition. I will say it clearly, that will be very difficult by staying vegan or vegetarian. You might think about cutting that up for some time x to help your d. AN patients often have a hypermetabolism and they need a lot of calories and fat to gain weight. My d (same age as yours) needed about 3000 calories a day and 100 g fat a day to gain some weight. Others here needed up to 6000 calories. That is very hard to get without cream and butter and lots of oil.
You need to have as much calories as possible in a small footprint because her stomach is not used any more to such an amount of food. You will need to do just the opposite of what you learned about dieting and "healthy eating". You will need to buy all full fat and extra cream stuff you can get.

"I think that once she turns 18 I will have no say in her medical care."
It will all be much more difficult then so you really need to start refeeding asap. She should be in a good condition up to then.

"If her Junior and Senior year of high school were to be interrupted by placement in a treatment program that would be extremely detrimental to her future."
My d is just now doing her final exams in school and one year ago she was IP and we didn´t know wether she could go back to school at all. I understand all your fears around her future, but to say it clear, with an alive ED she will not be able to finish school or go to university or even have that future you wish for her. So eating comes first, then school. If she can keep herself alive, then she can live indipendently and go to university. So better take her out of school for some times x and do a year again if necessary. My d was IP for 3 months last year. Her brain was so malnurished that she coud not follow the lessons any more (she is highly intelligent and had always a-grades). She could not even speak sentences with more than 3 words. After refeeding she could go back to school and she could even join her old class and she is doing her final exams right now (and it will be a-grade again). So if the brain works, school is no problem. Don´t be afraid of that.

"Right now she's at a place where she hasn't had her period for the last several months. I threatened not to have a birthday party for her next month, in the hopes to get her to eat enough to get her period."
That is serious but you cannot threaten to get her periods. Periods is only working with full nutrition. It will not help her if you cut her birthday party or work with punishment. Think about leverages. She needs your help to eat again. Read Eva Musbys great book: "Anorexia and other Eating Disorders: how to help your child eat well and be well: Practical solutions, compassionate communication tools and emotional support for parents of children and teenagers". You will find a lot of help and practical advices there. She is too afraid of eating at the moment to do this alone.

"When I tell her how serious it is what she's doing she says she's not as bad as some with eating disorders. When I say she should probably go into a treatment center she says no way she's not as sick as the people that are there. I tell her how bad it is that she hasn't had her. She says a lot of her friends don't get there. Regularly. I say I'm not talking about them I'm talking about you."
She cannot see that she is ill. But that is not necessary to help her. It is necessary that YOU know that she is sick. Denial doesn´t help you. We all didn´t want to realise that we have ED in the house. But running away and don´t want to see ED doesn´t solve problems. You have to put your big girl pants on and fight that bastard out of the house. No other way. She doesn´t need to be compliant. If it were cancer, you would make her get chemotherapy, won´t you? So you need to get in charge for food. Food is her medicine. Put the plate in front of her and ask her to eat it. Calm and with compassion, but consequent. Not eating must be not possible in your house.

"And then fall is extremely busy with my daughter being on the swim team." Many ED patients have problems with over-exercising. I would stop all sports asap. She looses more energy and weight with that and you will not get enough calories into her to do that.

"My boss at work has a daughter with an ED. He said that putting someone with ED in an inpatient treatment facility is a last resort because the person can come out worse off then when they went in."
Many of us here needed IP to get started. It depends on how bad your d already is medically and how quick you can learn how to refeed her. Make a meal plan. 3 meals and 3 snacks every day. You need to see if she has eaten it. No bathroom 1 hour after meals to avoid purging. No laxatives in the house. The goal is to make her gain 500-1000 g a week. If you can do that at home, I would prefer that definitivly. What your boss means is that she will learn a lot of bad things from other kids in IP (what can happen) and that a bad IP can make things worse (for example my d started self harm in IP). But in your region you may have access to good IPs and that is totally different. I would try it first at home because she might go back to school earlier than and can stay in contact with her friends. But she must know, if it doesn´t work she needs to go IP.

Don´t be afraid of that all. We are all here to help you. You are not alone. I was where you are one year ago. My d was 3 months IP and 4 months not in school. We needed 6 months to get her weight back and 4 more months to start her brain recover, but now after 14 months she is totally back and struggles only a bit. There are some fear foods left and she still has problems to eat in public, but we have a plan to work on that. After her exams I will start to eat with her in the uni mensa so that she will get used to that.
Recovery is possible. It is a lot of work and it doesn´t come over night, but you can do that and we are all here to help you if you want.

Send you a big virtual hug from Germany,
Tina72

Kali

Avatar / Picture

Moderator
Registered:
Posts: 904
Reply with quote  #15 
Hi J9k22,

Welcome to ATDT and I'm sorry you had to find us but hope you will get good guidance about how to proceed from others who have walked in your shoes before you. This is a very difficult illness but there can be positive outcomes with proper treatment and care.

Quote:
We've seen nutritionist that my daughter does seem to like. They were giving us a hard time about not eating dairy and that kind of made me mad so we stopped going to see the nutritionist and we also stopped seeing the doctor down in Westchester. I kind of told her off when she told me it was damaging for us to eliminate Dairy from our diet. 


First and foremost, as others have mentioned, nutritional rehabilitation is the most important thing for your daughter. Dairy is really important for bone growth during adolescence and your daughter could be at risk for osteoporosis. Especially if she has stopped getting her periods. Can you revisit your decision for you and your daughter to be vegan and reintroduce dairy? I believe that the nutritionist was giving you good advice. The goal during treatment is to broaden the foods the sufferer will eat and really have a balanced diet. And as you can see, her diet is not working for her right now. The brain needs fats in order to recover, and they are easy to get from cheese, yoghurt, milk, etc. And eggs are an important source of protein.

Quote:
Maybe I'm quick to listen to my daughter who says that she's got it under control, I'm not sure. 


I wouldn't take your daughters word for anything concerning the disorder right now. It is not that she wants to lie to you but she might not want to worry you and if she can make you think everything is fine, she can continue to restrict without your interference. If she needs to "have it under control" it means it is still present and she is being affected by it.

Quote:
But then the counselor my daughter saw a few times thought my daughter should go into an inpatient treatment program. I was not receptive to that. My boss at work has a daughter with an ED. He said that putting someone with ED in an inpatient treatment facility is a last resort because the person can come out worse off then when they went in.


If the counselor thought that your daughter needed a higher level of care that could include doing FBT at home and refeeding there, or doing one of the week long program at The Center for Balanced Living in Ohio or UCSD in San Diego, or residential, php, iop or even inpatient if she is medically compromised. There are many options for you to choose from depending on your family situation and what kind of support your daughter needs, and it is not necessarily true that a person will come out worse than when they went into inpatient. Residential treatment helped my daughter turn the illness around and start working towards remission.

Quote:
I didn't realize until last year that one does not quite recover from an eating disorder.


Recovery is possible but it will take time and effort to guide your daughter there. Don't worry about her taking time off from school. My daughter took a year off and really—it doesn't matter. Some of our kids are high achievers; it fits the profile but the fact is that if your daughter is not well she won't be able to cope with the stresses of college no matter how good a student she is until she is eating properly again. 

Start by serving 3 meals a day and 2 snacks, taking your daughter to the dr. and nutritionist and finding an FBT therapist, if possible, that would be a good start to see what you can do and see what options you have to help turn this around. Also look into UCSD and the Center for Balanced Living week long programs.

sending support,

Kali

__________________
Food=Love
tina72

Caregiver
Registered:
Posts: 1,116
Reply with quote  #16 
I forgot to ask, has your d seen a GP and taken blood test, a heart check and a bone check (dexa-scan)? Osteoporosis is a really big problem and you can turn that around only up to 21. You don´t want her to end in a wheelchair.
Blood test will be important to see her deficits. Check especially the b-vitamins and vitamin d, they are often a big problem with vegan/vegetarian nutrition.
Tina72
j9k22

Caregiver
Registered:
Posts: 15
Reply with quote  #17 
Thank you all! This is so overwhelming. I got to bed late last night and had to get up early so after a Long Day's Work the last thing I really want to do is tackle this depressing and overwhelming subject. The only internet I have at home is through my phone and it's not easy replying back that way. Work was long and stressful and the trip I was going to take to the library to use their computer did not happen. now I have a stressful day tomorrow having to drive in a snowstorm to get to work. Forgive me if I don't reply back. I'm so glad I found this forum though. what about financial aid for going to college? Does that get all messed up if a kid Mrs. The traditional freshman year right out of high school timeframe? I only have one anymore. I mean when we went to the nutritionist she actually thought my daughter was borderline with some things. My daughter doesn't isolate herself, she has a lot of friends, she's very social. but then I can see sometimes where those social relationships cause her stress which then cause her to revert back to her eating disorder. she doesn't restrict yourself from eating. She does eat but what she considers a meal I would consider a small component of a meal. Sometimes she seems disgusted by how much I eat. I bought a small pizza pie this weekend and ate the whole thing but one slice. that was my dinner though. she thinks that was unhealthy binge eating. But anyway thanks for being here.

All this talk about finding her old weight and getting her back to that. No one had ever talked to me about any of that before. We did see a doctor but my daughter did not like her very much. I don't restrict Dairy for ethical reasons, I restrict it for health reasons. Not something I want to discuss As It Gets almost is heated. I did not appreciate this doctors lack of knowledge about the unhealthiness of dairy. The day when all in the medical profession will know this as a fact will come one day. But today as Dr once thought smoking was fine They likewise think Dairy is fine. But I kind of got pretty annoyed with this doctor and didn't want to go back again. just trying to figure all this out as there are going to be few Dr That understand a plant-based lifestyle and its health benefits. but the health of my daughter is Paramount. If going off a plant-based / vegan diet will help her then that is fine. but I'm just too overwhelmed to to all the reading that I need to do tonight. Plan to get a good night's sleep go to work tomorrow in the snow storm. Hopefully I'll get to come back home early and then I'll do some online research at that time. Thanks for being here! I'm so glad I found this forum. thinking that my goals for this week are to do some reading, make an appointment with the pediatrician Since my daughter hasn't gotten her period for about 6 months now. Is that the wise thing to do to make an appointment with the pediatrician? I'm thinking that that would be an important First Step because I might need to do that before going to see The Specialists that we'll then need to be seeing in the future. perhaps I could make some phone calls with treatment centers to try and get a sense of whether or not my daughter Needs inpatient treatment. That is just so absolutely overwhelming. I really would like to schedule the inpatient treatment for July or August so she doesn't have to miss everything else she has going on. There is no good time for this at all!
iHateED

Avatar / Picture

Caregiver
Registered:
Posts: 639
Reply with quote  #18 
Welcome to the group J9K22, though so sorry you need to be here.   I can tell by your posts how overwhelmed and scared you are for your D and for her future.  My D was just starting her junior year in high school when the ED came out in full force.   She had been restricting over the summer and also became vegan (she said for health reasons but as you will read on here, many sufferers say that when really all they want to do is control the amount and types of food they put into their bodies).   I'm not sure if I read in your posts if your D has been getting on going check ups with a doc.  With this illness, they can be fine one day and needing hospitalization the next.   We took our D to the emergency room of a local hospital in September of her Junior year of hs and asked that she be checked for medical stability.  She was severely dehydrated, low heart rate and an infection.  She stayed in the hospital for 10 days just to get medically stable.  My H and I had no idea she was this sick but it was an eye opener for sure.   From there, she did 6 weeks of a Partial Hospitalization program (called a PHP) and then 4 weeks of an Intensive Outpatient Program (called IOP).   She missed all of September and October from school.  I was just happy to have her back in school and assumed she was recovered, or at least on her way to recovery.  I was a lot in denial about how much time and effort that I would need to put into helping her get back her life and health.  Even though we were following FBT rules and plating her food, she was able to eat less and less, and have more freedom (which I thought was a good thing to make her want her life back).   We even let her go back to her sport in hs (big mistake).  By January she was in a total relapse and at her lowest weight again.  We researched several programs and decided on the 5 day UCSD family program and then if that didn't work, we would try residential.   The great thing about UCSD is the contract you leave with.  My H and I were very reactive parents and always shouted out a punishment when a meal wasn't eaten or a milkshake thrown at the wall.   Problem was also we were not very good at following through with our words.  We learned to be less reactive and to just follow the contract which had the consequences laid out.  She missed about 3 weeks of school in February and March.  We are in NJ and our school was very good about implementing a 504 plan.  If your D needs to miss school, that's ok, do what it takes to fight this illness and get her back to a life worth living.  My new motto became "Life is just an arbitrary time line!"   My D is in junior year of college now and living an ED free life!

Hang in there.  Read around this forum as much as you can and ask lots of questions.  And most importantly, take good care of yourself as best you can. 
Mamaroo

Caregiver
Registered:
Posts: 374
Reply with quote  #19 
Hi, just writing a quick note about our experience of IP. My d was admitted to the general children's ward and I was with her all the time. We shared the room with babies. Despite having no contact with other ED girls, she got all the bad habits of ED. She would hide food, or cut them up into small bits, ate with her hands and cut herself. IP didn't cause this, ED did. My d needed IP to start her recovery, don't be afraid of this. Listen to what the hospital tells you to do when she gets discharged. We followed the mealplan the hospital gave us and we were never back IP. Those who didn't follow the hospital's mealplan or recommendations regarding exercise were back. 

You can do this, sending lots of hugs from down under!

__________________
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 in March 2017. She is back to her old happy self and can eat anything put in front of her. Now working on intuitive eating.
tina72

Caregiver
Registered:
Posts: 1,116
Reply with quote  #20 
Hi,
yes, it is a lot of information you find here and it IS overwelming, but it is the best information you can get actual on this topic.
I heard of growth chart here the first time, too, and it makes so much sense when you realise that every person has an individual genetic weight range to feel comfortable with.
You can get a 504 for school, that helps a lot, and I am sure that there are scholarships for young people with diseases in US, too.
My d for example can take double time to finish university as normal because of the disease. If she is fit for college/university, you will find a way.

"Sometimes she seems disgusted by how much I eat."
Yes, even that is totally normal for RAN. My d was disgusted about people she thought were fat (just normal people in my eyes) and she didn´t want to talk to girls in school she thought were fat (nice friends today). ED in her head tells her it is NOT normal to eat normal portions.

"Is that the wise thing to do to make an appointment with the pediatrician?"
Yes, that will be the first step. You will need a diagnose to talk to all ED units and he needs to check if she is medically stable.
Regarding the diary thing, I would suggest you decide that when you have the bone check and the blood test. If everything is o.k., you can do that further on, but if it is not o.k., you will need to re-think that at least until her results are good.
My d always ate meat and diary (not much and only biological raised) and she had very bad vitamin b12 results as well. So the digestion of AN sufferers is genetically different and they have to eat a special "diet" (like diabetes patients). Adding all the missing things in her blood changed her mood very much.

"I really would like to schedule the inpatient treatment for July or August so she doesn't have to miss everything else she has going on. There is no good time for this at all!"
No time is a good time for ED or going to hospital. It probably will not work to wait so long for 3 reasons: 1. your d will go further down the rabbit hole and lose more weight and get deeper into ED and the way out will be longer if you wait. 2. your d will need to go when they offer you a bed. ED beds are rare. And 3: you need to do something before she turns 18 because it will be much more difficult then. If you want to help her, do it NOW. You can start refeeding today. You have no time to wait.

Come here and ask and vent whenever you need, there are always nice people around here 24/7.
Tina72
Mamaroo

Caregiver
Registered:
Posts: 374
Reply with quote  #21 
Hi, I quickly looked at vegan diets to gain weight and found a couple of interesting links. Just to clarify, I believe that it is very difficult to gain weight with a vegan/vegetarian diet and we are not vegan/vegetarian ourselves, however, I refed my daughter on ensures alone, so I can understand if you have limited options to refeed.

So back to the sites, it was mainly from athletes who wanted to bulk up in the gym (http://www.nomeatathlete.com/gain-weight-vegan/). To gain weight he found he had to do the following: He stopped running and all other forms of cardio exercise and he added a lot more fat to his diet in addition to increasing the protein. The fat and protein came from protein powder, almond butter, flax and coconut oil. He also cut down on raw vegetables and salads since " since they take up a lot of room without providing many calories". On the website there is a daily meal plan and a smoothie recipe available as well.

Here are some tips from another website (http://www.thefullhelping.com/gaining-weight-with-raw-and-vegan-foods/ ):
  • Make an effort to eat more fats. If you suspect that healthy fats make up less than 25-40% of your overall food intake for the day, you should try eating more. No, you don’t have to do this with a spreadsheet or a calculator: just do a quick mental comparison of how much fat you tend to eat (versus the whole bulk of what you eat), and see if the ratio could use a boost.
  • Seek our foods that are rich in calories, like nuts and nut butters, avocados, certain whole grains, and coconuts. These foods will easily add caloric density to your meals, making it easy to take in more energy without eating more food than you can stomach.
  • Snack on foods that are calorically dense. I recommend either a) calorie-rich snack bars (such as ProBars or Raw Revolution bars) or b) a nutrient dense smoothie. You can try making one with a banana, 2 tbsp nut butter, a smoothie infusion (such as the Vega brand), and fresh nut milk. Oatmeal is also great for tossing into smoothies! These snacks offer energy without too much bulk, and therefore make it easy to get more calories in.
  • Begin increasing the size of your meals. Try eating 50% more of each meal than you already do (so, if you typically eat a sandwich at lunch, eat a sandwich and a half; if you tend to have a cup of soup with a cup of quinoa, have one and a half cups of each). Over time, this will add up to positive results.

http://www.vegkitchen.com/nutrition/5-ways-to-healthfully-gain-weight-on-a-vegan-diet/ This site has 5 suggestions for gaining weight, summarised as 1) nuts are your friend (peanut is a cheap option), 2) eat a snack rich in protein, fat, or carbs right before bed 3)  Include lots of high- fat food every day such as avocados, nuts, seeds, and oils 4)  Drink smoothies and juice. Make a high calorie smoothie by adding chia seeds or nut butter. and 5) pair legumes with a grain such as rice and beans or a quinoa-lentil with chili.

I would also add daily a multi-vitamin and calcium tablet.

Good luck!


__________________
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 in March 2017. She is back to her old happy self and can eat anything put in front of her. Now working on intuitive eating.
j9k22

Caregiver
Registered:
Posts: 15
Reply with quote  #22 
So this week has been very hectic but I'm finally able to sit down and find some time to think about what to do to get my daughter treatment. I reached out to the school guidance counselor because one of my biggest fears is my daughter's schooling being affected. The guidance counselor replied back and suggested we might try Outpatient Therapy. She recommended a program that my pediatrician also recommended 18 months ago. At the time they didn't take our insurance. But now our situation has changed and they do take our insurance. http://hpalivewell.com is the program based out of Albany and Poughkeepsie New York. Has anyone heard of it? Now I'm nervous that I'm not trying all these other treatment centers that people recommend. I don't think I have the financial means to go to the place in San Diego for a week. I feel like my daughter could do an outpatient program. it's just her attitude might require inpatient treatment. I hope not though
j9k22

Caregiver
Registered:
Posts: 15
Reply with quote  #23 
Quote:
Originally Posted by Mamaroo
Hi, I quickly looked at vegan diets to gain weight and found a couple of interesting links. Just to clarify, I believe that it is very difficult to gain weight with a vegan/vegetarian diet and we are not vegan/vegetarian ourselves, however, I refed my daughter on ensures alone, so I can understand if you have limited options to refeed.

So back to the sites, it was mainly from athletes who wanted to bulk up in the gym (http://www.nomeatathlete.com/gain-weight-vegan/). To gain weight he found he had to do the following: He stopped running and all other forms of cardio exercise and he added a lot more fat to his diet in addition to increasing the protein. The fat and protein came from protein powder, almond butter, flax and coconut oil. He also cut down on raw vegetables and salads since " since they take up a lot of room without providing many calories". On the website there is a daily meal plan and a smoothie recipe available as well.

Here are some tips from another website (http://www.thefullhelping.com/gaining-weight-with-raw-and-vegan-foods/ ):
  • Make an effort to eat more fats. If you suspect that healthy fats make up less than 25-40% of your overall food intake for the day, you should try eating more. No, you don’t have to do this with a spreadsheet or a calculator: just do a quick mental comparison of how much fat you tend to eat (versus the whole bulk of what you eat), and see if the ratio could use a boost.
  • Seek our foods that are rich in calories, like nuts and nut butters, avocados, certain whole grains, and coconuts. These foods will easily add caloric density to your meals, making it easy to take in more energy without eating more food than you can stomach.
  • Snack on foods that are calorically dense. I recommend either a) calorie-rich snack bars (such as ProBars or Raw Revolution bars) or b) a nutrient dense smoothie. You can try making one with a banana, 2 tbsp nut butter, a smoothie infusion (such as the Vega brand), and fresh nut milk. Oatmeal is also great for tossing into smoothies! These snacks offer energy without too much bulk, and therefore make it easy to get more calories in.
  • Begin increasing the size of your meals. Try eating 50% more of each meal than you already do (so, if you typically eat a sandwich at lunch, eat a sandwich and a half; if you tend to have a cup of soup with a cup of quinoa, have one and a half cups of each). Over time, this will add up to positive results.

http://www.vegkitchen.com/nutrition/5-ways-to-healthfully-gain-weight-on-a-vegan-diet/ This site has 5 suggestions for gaining weight, summarised as 1) nuts are your friend (peanut is a cheap option), 2) eat a snack rich in protein, fat, or carbs right before bed 3)  Include lots of high- fat food every day such as avocados, nuts, seeds, and oils 4)  Drink smoothies and juice. Make a high calorie smoothie by adding chia seeds or nut butter. and 5) pair legumes with a grain such as rice and beans or a quinoa-lentil with chili.

I would also add daily a multi-vitamin and calcium tablet.

Good luck!



That was so kind of you to include all that information. Thank you so much!
j9k22

Caregiver
Registered:
Posts: 15
Reply with quote  #24 
There is no good time for this at all!"
No time is a good time for ED or going to hospital. It probably will not work to wait so long for 3 reasons: 1. your d will go further down the rabbit hole and lose more weight and get deeper into ED and the way out will be longer if you wait. 2. your d will need to go when they offer you a bed. ED beds are rare. And 3: you need to do something before she turns 18 because it will be much more difficult then. If you want to help her, do it NOW. You can start refeeding today. You have no time to wait.

Come here and ask and vent whenever you need, there are always nice people around here 24/7.
Tina72

Hi. How do I do the 'refeeding' myself?
j9k22

Caregiver
Registered:
Posts: 15
Reply with quote  #25 
Quote:
Originally Posted by iHateED
Welcome to the group J9K22, though so sorry you need to be here.   I can tell by your posts how overwhelmed and scared you are for your D and for her future.  My D was just starting her junior year in high school when the ED came out in full force.   She had been restricting over the summer and also became vegan (she said for health reasons but as you will read on here, many sufferers say that when really all they want to do is control the amount and types of food they put into their bodies).   I'm not sure if I read in your posts if your D has been getting on going check ups with a doc.  With this illness, they can be fine one day and needing hospitalization the next.   We took our D to the emergency room of a local hospital in September of her Junior year of hs and asked that she be checked for medical stability.  She was severely dehydrated, low heart rate and an infection.  She stayed in the hospital for 10 days just to get medically stable.  My H and I had no idea she was this sick but it was an eye opener for sure.   From there, she did 6 weeks of a Partial Hospitalization program (called a PHP) and then 4 weeks of an Intensive Outpatient Program (called IOP).   She missed all of September and October from school.  I was just happy to have her back in school and assumed she was recovered, or at least on her way to recovery.  I was a lot in denial about how much time and effort that I would need to put into helping her get back her life and health.  Even though we were following FBT rules and plating her food, she was able to eat less and less, and have more freedom (which I thought was a good thing to make her want her life back).   We even let her go back to her sport in hs (big mistake).  By January she was in a total relapse and at her lowest weight again.  We researched several programs and decided on the 5 day UCSD family program and then if that didn't work, we would try residential.   The great thing about UCSD is the contract you leave with.  My H and I were very reactive parents and always shouted out a punishment when a meal wasn't eaten or a milkshake thrown at the wall.   Problem was also we were not very good at following through with our words.  We learned to be less reactive and to just follow the contract which had the consequences laid out.  She missed about 3 weeks of school in February and March.  We are in NJ and our school was very good about implementing a 504 plan.  If your D needs to miss school, that's ok, do what it takes to fight this illness and get her back to a life worth living.  My new motto became "Life is just an arbitrary time line!"   My D is in junior year of college now and living an ED free life!

Hang in there.  Read around this forum as much as you can and ask lots of questions.  And most importantly, take good care of yourself as best you can. 


Great post. Thank you. Sounds a little like my experience I am interested in the UCSD program. I have also contacted a local IOP but they are not solely FBT. I am having second thoughts about going with the IOP. I fear if it isn't FBT it will just be a waste of time. Fear that there is a limit to how many programs insurance will cover. If one doesn't work out will they cover another.

Someone said start refeeding now. I don't know how to do that. I feel like I am in the fact finding stage and haven't let D know I am on mission to attack and treat ED once and for all! Looking back I feel so dumb I didn't do it sooner but I didn't know. I've learned so much from this forum in just a few days. I wish I had stumbled upon it sooner.

Go with the local IOP program or try and intensive 5 day FBT program. My gut says the latter.

This is what the IOP HPA/Live well says:
Here are 3 key reasons why our LiveWell program for eating disorders might be the right fit for you:
Our highly trained and highly skilled staff members include recognized researchers in the field – and we are results-oriented.
We believe in treating patients with eating disorders where they live. Our outpatient program enables you to live at home, stay involved in your work or school, maintain your routine and maintain relationships that are vital to your successful treatment.
Our office has a warm, welcoming atmosphere that many of our patients come to think of as their “safe place.

Nothing about it being a brain disorder. I like what UCSD, for example says on its website more. Am I just making excuses? Should I give this IOP a try or keep looking? I feel like I should go with a FBT. I don't know maybe IOP is necessary and a good start and I am fortunate to have one 20 minutes away in my community.
Previous Topic | Next Topic
Print
Reply

Quick Navigation:

Easily create a Forum Website with Website Toolbox.

F.E.A.S.T. Families Empowered and Supporting Treatment of Eating Disorders
is a 501(c)3 charitable organization committed to maintaining the Around the Dinner Table forum as a FREE service for any caregiver of a loved-one with an eating disorder.

P.O. Box 1281 | Warrenton, VA 20188 USA

US +1 855-50-FEAST | Canada +1 647-247-1339 | Australia +61 731886675 | UK +443308280031 

This forum is sponsored by F.E.A.S.T., an organization of parents serving parents and caregivers of patients of all ages with anorexia, bulimia, and other eating disorders. Information and advice given on this forum does not necessarily represent the policy or opinion of F.E.A.S.T. or its volunteers and is meant to support, not replace, professional consultation.

F.E.A.S.T. is registered as a nonprofit organization under section 501(c)(3) of the United States Internal Revenue Code.

Terms of Use | Privacy Policy | Community Rules | Forum Rules | F.E.A.S.T. Principles | YMadmin | WTadmin
Custom Search of F.E.A.S.T. and Forum Content: