F.E.A.S.T's Around The Dinner Table forum

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nxk0707
Our d is 14 and has just been diagnosed with purge disorder with restrictive eating.  We have seen some excellent providers and are on the road to recovery.  I have a few questions that experienced parents might be able to answer:
1. How are you handling socializing, like going to parties, sleep overs, and school events?
2. How have you handled supervision at school? 
3. Is there a time when relapse is typical after a period of doing well?  What is the timeframe for this?

Thank you!
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ValentinaGermania
Hi and a very warm welcome from Germany. I am sorry that you need to be here.
As your questions are common for all kind of EDs I try to answer what we did:

1) Socializing during refeeding was only possible in between meals and snacks at the start. So very low at that time. When she could eat with others around we offered her friends to come to our house and they could stay longer and eat with us. This was good as she ate better with witnesses.
Parties: she could leave to a party but only after dinner.
Sleep overs: at our house no problem, at friends house she could leave after dinner and be back for breakfast.
School events: no problem after meals, but no day trips or school trips before weight restoration
2) We had a teacher to supervise morning snack and fetched her up for lunch at home and brought her back afterwards as there was no possibility for supervised lunch in our school here.
3) in my experience typical relapse point is a) directly after IP, b) after weight restoration on a too low weight and c) givig freedom back too early and d) changing school or going to college/university.

Please come around with all your one million questions, there are always nice parents around here!
Keep feeding. There is light at the end of the tunnel.
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Torie
Hello, and welcome.  

When I realized that my d suffered from an eating disorder, I quickly realized that these are tough, tough illnesses to beat.  Many require a relatively high level of care, while others are able to treat at home.  Naturally, I hoped that my d would be in the latter group, but I wasn't sure if we could do that or not.

I found it helpful to learn what treatment looks like with this higher level of care we hoped to avoid:
No privacy.  Bathroom is locked when not in use and bathroom use is supervised.
No access to Internet, and limited access to phone.
All meals monitored.

Okay, that is what the pros do.  That is not what we want for our kids.  But to be able to avoid that, we usually have to approximate it in our homes, turning our homes, effectively, into a tiny treatment center for one.

That is my long-winded (well, semi-long winded, don't get me going) way of saying that if I didn't want someone else to TOTALLY curtail her privacy and freedom, I needed to go a l-o-o-o-n-g way down that path myself. 

So for months and months she had to eat every meal and snack with me.  She had to use the bathroom before each meal so that she could stay with me for at least an hour afterwards.  If she wanted to go to a social event, we would plan ahead so that she would arrive late, leave early, excuse herself in the middle to come out to the car for meal/snack, etc.  Whatever it took to get the needed supervision.

Sucks, of course.  But it did keep her out of residential. xx

-Torie
"We are angels of hope, of healing, and of light. Darkness flees from us." -YP 
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nxk0707
Wow guys!  This is super helpful.  Many thanks.  A bit more information: She has never lost any weight at all.  She just was super restrictive about what she ate and occasionally purged if she felt like it was a "binge".  Of course, what a "binge" is varies from one child to the next.  We never noticed a single hint of weight loss.  Do you think this changes the "severity" of her situation?  
What I am hearing is the intense need to monitor around and after meals, since this is such a focal point of eating disorders.  May I ask how you handled snacks or eating between meals?  How much supervision is needed there?
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atdt31_US
What type of doctor diagnosed her?  
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, based solely on weight being less than 75% of Ideal Body Weight.  Mildly picky, but mostly the problem is a volume/early satiety issue, along with abdominal discomfort and chronic constipation, all present since birth.  UPDATE:  July 2019 diagnosed with PANS. Dr. said likely started first PANS episode at less than 1 or 2 years of age.  On long-term daily prophylactic antibiotics. BMI now about 16 after period of intense refeeding prior to PANS dx,  followed by stagnation as we sort out what is next. FWIW ED-D is a fraternal twin and we have no other kids.
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Kali

Dear nxk0707,

So sorry your daughter is not well. My advice would be to learn as much as you can about the disorder.

A great book to start with would be:

When Your Teen Has an Eating Disorder: Practical Strategies to Help Your Teen Recover from Anorexia, Bulimia, and Binge Eating by Dr. Lauren Mulheim.

I'll try to answer your questions:

 

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1. How are you handling socializing, like going to parties, sleep overs, and school events?

We did not restrict socializing. I did try as much as possible to make sure that meals were eaten before she went out and if she was at a friends house I sometimes went and got her at mealtimes, fed her and then brought her back. (I had to assume that she was not eating on her own). When she finally was in recovery all meals were eaten at home for a long period of time.

 

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2. How have you handled supervision at school? 

I was rather clueless during my d's illness during high school, so there was no supervision during lunch. As a result she later admitted she spent many lunch hours in the library studying and not having any lunch. So I guess my advice here is don't be like me. I was at work during the day and never dreamed that she wasn't eating her lunch.

 

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3. Is there a time when relapse is typical after a period of doing well?  What is the timeframe for this?

I don't think there is a real time frame because it not a one size fits all illness. Vigilance is necessary for a long time. Sometimes what seems like a relapse just indicates that the person was never recovered but still working on remission. Recovery is not a straight line and there may be steps forward and backward.

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Our d is 14 and has just been diagnosed with purge disorder with restrictive eating.  We have seen some excellent providers and are on the road to recovery. 

Typically it takes awhile for recovery to kick in. Feeding 3 meals a day with a couple of snacks, and making sure that your daughter cannot visit the bathroom after meals might be the first steps. If she eats 3 balanced meals and a couple of snacks during the day it may help her not want to binge since she will not be hungry. What type of treatment is your family and daughter participating in? 

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She has never lost any weight at all.  She just was super restrictive about what she ate and occasionally purged if she felt like it was a "binge".  Of course, what a "binge" is varies from one child to the next.  We never noticed a single hint of weight loss.  Do you think this changes the "severity" of her situation?  

I don't think that not losing weight or noticing weight loss changes the severity of her situation. 
Purging is very serious and can lead to dangerous health complications. Low potassium can affect the heart for example. It can ruin the enamel on the teeth and cause harm to the esophagus. Has your daughter had labs done to check her electrolytes? The behavior really needs to be stopped as soon as possible. One thing to understand is that teens who purge often lie about it. Supervision is key. Not allowing a child to go to the bathroom after eating for a long period of time (many months) has worked for some families. 

Do you have your daughter's historical weight and height charts from her pediatrician? Can you chart her growth curve and see whether she is still on it? In order to stay on her curve she will need to be gaining throughout her teen years. 

 

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May I ask how you handled snacks or eating between meals?  How much supervision is needed there?

We could not assume our child was eating unless we saw her eating, unfortunately. So the answer to that question is as much supervision as possible.

We are here to answer any questions you might have and to encourage you as you help your daughter navigate through this illness.

warmly,

Kali

Food=Love
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ValentinaGermania
nxk0707 wrote:
Wow guys!  This is super helpful.  Many thanks.  A bit more information: She has never lost any weight at all.  She just was super restrictive about what she ate and occasionally purged if she felt like it was a "binge".  Of course, what a "binge" is varies from one child to the next.  We never noticed a single hint of weight loss.  Do you think this changes the "severity" of her situation?  
What I am hearing is the intense need to monitor around and after meals, since this is such a focal point of eating disorders.  May I ask how you handled snacks or eating between meals?  How much supervision is needed there?


Weight loss is ONE symptom but you can be severly ill with anorexia or other EDs on a normal weight range just by restricting dangerous things that are essential for life. Her situation is severe when she is not able to eat normal and when she has defiencies in blood because of her restriction.

We had/have 3 meals and 2 snacks in between. At the start all meals and snacks were monitored 24/7. That was needed because AN was tricky and what we did not see she has eaten was normally not eaten. There was no eating in between meals and snacks as my d had AN and was not able to snack in between the meal plan at first. In case of binge eating it helps to stick to a regular meal schedule as well and avoid snacking and binging in between.
Here a close supervision was needed for about 6 months and then we could slowly start to give her some freedom back and allow her to have a snack on her own now and then. But it took another year to get back to almost no supervision.
Keep feeding. There is light at the end of the tunnel.
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nxk0707
Hello,
We took her to her pediatrician and then a dietician that specializes in eating disorders.  My wife and I are both pediatricians as well.  We have family therapy seeing us soon to get more detailed diagnostic info.
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ValentinaGermania
That is a good start that you are pediatricians! Can you do some bloodwork and check all life signs and check deficiencies in vitamins and minerals? Many ED patients have a deficiency in zinc, b-vitamins, iron, Vitamin D and potassium, calcium, magnsium etc.
Please check pulse and blood pressure as well (orthostatic).
Here are the AED guidelines about medical treatment: https://www.aedweb.org/resources/publications/medical-care-standards

She does not need to see a dietitian herself. No talk about food, calories and all that.
Systemic family therapy is outdated for EDs. Please ask for family based threatment FBT. If you can tell us in what region you are we can maybe recommend a therapist.
Keep feeding. There is light at the end of the tunnel.
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nxk0707
Guys, this has been incredibly helpful, so thank you!  As much as professional guidance is needed, there is something very trustworthy and genuine about hearing real life experiences.  We had labs and an EKG and everything was normal.  Her vit. D level was a little low, so we are treating that.  We recently went to the dentist, and she said her teeth look very good actually.  We are seeing family therapists, dietician, and her pediatrician for regular visits.  

My wife and I are wondering about overnight.  We have dinner and then sit together with her doing homework and reading for about 90 minutes.  We are not consistently doing a snack at bedtime.  We are wondering how to manage supervision overnight.  Of course, we need to sleep!  But, we are not sure how to handle supervision for the kitchen and the bathroom overnight.  Any suggestions?
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Torie
Your current schedule of dinner followed by sitting together for 90 minutes sounds really good.  Some do find that purging can occur even later than that (2+ hours) so at a minimum, I would advise keeping a keen eye (and ear) whenever she does go to the restroom.  We never had purging (thankfully) but others can offer tips to nose out the telltale signs, which can be very tricky.

(These kids tend to be very bright, and equally sneaky once ED has taken hold, although that may be a drastic change from previous habit.)

One thing that can help is making sure each meal and snack includes a good mix of carbs, proteins, and dietary fat.  

If you think she may be purging at night, one option is for your wife to sleep in her room, or put a mattress right outside her door and sleep on that.  If you think that sounds extreme, please keep in mind that with residential treatment, ALL bathroom privacy is lost, and some here have had to do things like remove the bathroom door.

It is very difficult to stop purging.  One theory is that the body releases endorphins after vomiting, which partially explains why we feel SO much better afterwards.  But there is a real cost associated with that effect with ED.

I am assuming that your pediatric training and that of your wife did not focus extensively on ED.  The same is true for many/most/nearly all dietitians and therapists.  Many here have enlisted professional "help" that turned out to be worse than no help at all.  Just a word to the wise on that.

Please feel free to ask all the questions you like. xx

-Torie
"We are angels of hope, of healing, and of light. Darkness flees from us." -YP 
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MKR
Hello and welcome, 

Just a quick response to your last question: some parents have slept on the floor next to the child's bed. Or on the couch just outside the child's bedroom.  Sounds extreme, but It sends an effective message to what goes on in the mind. 

I am sure there'll be other practical ideas coming from here soon.

All the best, 
Mum's Kitchen

14-y-o "healthy living" led to AN in 2017 and WR at 16. Current muscle dysmorphia.
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ValentinaGermania
nxk0707 wrote:

My wife and I are wondering about overnight.  We have dinner and then sit together with her doing homework and reading for about 90 minutes.  We are not consistently doing a snack at bedtime.  We are wondering how to manage supervision overnight.  Of course, we need to sleep!  But, we are not sure how to handle supervision for the kitchen and the bathroom overnight.  Any suggestions?


We also had no snack at bedtime, some families do have, but that is no fix rule. We put the calories into the other 5 meals and snacks and kept the bedtime snack for emergency case.

Supervision over night depends on what she is probably doing. If there is a risk for secret purging, exercising or self harm you might need to sleep with her for some time. Some parents have an alarm that rings when the kids get up. Close front door and have windows and terrace door locked in the night so she cannot escape.
Some parents lock the kitchen and the toilet over night. If that is not possible for the kitchen (if you have an open kitchen) think about how to avoid binging in the night (put food in locked cupboards or another room - what possibilities do you have with the fridge?). You need to be creative and think about how YOU can avoid that ED behaviour and make it impossible. Then she can stop it.

We did sleep with our d in change so at least one of us could sleep every 2nd night. It is a marathon and not a sprint so save your power for a long run...

Ah, and if you are a doctor yourself please read "Decoding Anorexia" by Carrie Arnold asap. It is a great book about ED science (not only AN) and the biochemical process of EDs and will help you understand your ds behaviour much better.
Keep feeding. There is light at the end of the tunnel.
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nxk0707
Thank you all!   Today, we met our family therapist just the two of us to map out our course and answer some questions.  So much of what she told us I have heard here, which is reassuring🙂 . Torie, your point about dieticians is exactly what our therapist said too.  I guess my question is IF you find that the dietician is very experienced with ED's, have others made them part of the treatment starting at the beginning? If so, how often did you go?

I ordered both of the books mentioned in this thread.  Again, our therapist recommended them too.  It is 100% true that we did not get much training in ED's at all during residency.  This is a totally new journey.
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Enn

Many meet with the dietitian alone to get ideas. Your child does not need to be there. It will be parents that will organize and deliver the care. 

Remember that a healthy 14 year old does not normally ask about food they just eat and do their teenage stuff.
if you know what to feed her then you don’t necessarily need to see a dietitian and your d does not need to be present. 

For AN we usually need a lot of calories so some need help to figure out how to increase calories and/or they leaned  here how to add to more calories to the foods. 

After I knew what and how to add calories for my d with AN, I did not need a dietitian. I needed the therapist to help support my efforts on feeding d, and I needed the therapist to complain and cry to when d would not eat. Our therapist helped me figure out how to ensure d would eat, how to get d to sit ( she stood all the time as part of her Ed) and helped me to figure out how to challenge and extinguish the maladaptive behaviours.
As for medical school and residencies, unless we choose a specialty we only learn a very little bit of many medical illnesses. So in med school and residency there is little on ED,and  there is very little about other illnesses as well. 

please read around EDs as much as possible. And please know you are not alone.

 

When within yourself you find the road, the right road will open.  (Dejan Stojanovic)

Food+more food+time+love+good professional help+ATDT+no exercise+ state not just weight+/- the "right" medicine= healing---> recovery(--->life without ED)
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Torie
I think a visit to the dietitian (without your d) can be a good thing, and you will see if that is something helpful to continue.  In general, you and your wife know what nutrition she needs - you have fed her her whole life.  I can imagine, though, that a situation is possible where an ED-aware nutritionist could offer tips and help brainstorm.

In the Torie family, what we needed was for an "expert" to have our back and be the bad cop.  To tell our d that we knew what she needed and back us up by telling D she needed to do that.  That was the most important thing, by far, we could get from our professional help.

We (eventually) found a true ED expert who did do that.  Before then, our professional "help" undermined us and triangulated with ED.  It sounds like you have found a sensible therapist.  That is really great news!  xx

-Torie 
"We are angels of hope, of healing, and of light. Darkness flees from us." -YP 
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MKR
Hi again, 

Just to add re relapses and "not losing weight". 

Teenagers will go through masses of calories because they should be growing. A relapse can happen due to a growth spurt (something I hadn't been aware of; the weight gain was not sufficient to keep up).

Another bit on purging: if your daughter is also bingeing, try to stock food that is not binge-friendly (ie sweet and starchy foods) and feed your child on variety.

I hope all this is not overwhelming for you. You will soon develop a sense for when ED is at play and when it's your child at her normal. 
Mum's Kitchen

14-y-o "healthy living" led to AN in 2017 and WR at 16. Current muscle dysmorphia.
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nxk0707
Thank you all.  I have never felt so overwhelmed in my life, ever.  I've spent decades treating kids with complex chronic conditions and in acute settings, but I have never felt so lost.  We developed a good school monitoring plan today with our d's counselor where she will sit in the lunchroom with faculty but monitor our d.  Our d will show her what she got and report what she ate and all in view of her counselor.  We have a more 1 to 1 plan in place if that does not work after a one week trial.  

Has anyone found that when treatment starts, they see purging at times when they did NOT see it before?  Like she denies ever doing it at school but was very free in telling us she did it at home, after school, at night and in the upstairs bathroom only.  Should we be on the look out for purging at school?
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Enn

Yes once you start to challenge the ED, things do get worse rather than better. It will be your (fake) confidence that this will get better and that you will help her through  it, that is the key.
Also unless you have eyes on her all the time you will not know for sure that she is not purging at school.
Many school staff don’t always know what supervision really means. My d’s teacher grade 6 watched d ‘drink my her smoothie but d confessed that when she went to the bathroom she dumped out the smoothie. Does someone go with her to the bathroom to ensure she is not purging? That may be difficult for school staff to monitor.
many of us had to keep our kids home for awhile to ensure ED behaviours were under control before sending back to school.  you are learning and doing a great job! I really mean that! 
How long ago was she diagnosed? Are you working on gaining weight and stopping purging and a routine for meals so there is no bingeing?
i just wish to understand your situation a bit more so that my notes to you are appropriate for your situation.
Sending my best

When within yourself you find the road, the right road will open.  (Dejan Stojanovic)

Food+more food+time+love+good professional help+ATDT+no exercise+ state not just weight+/- the "right" medicine= healing---> recovery(--->life without ED)
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Enn
Ps how are you monitoring her so that she cannot purge? 
When within yourself you find the road, the right road will open.  (Dejan Stojanovic)

Food+more food+time+love+good professional help+ATDT+no exercise+ state not just weight+/- the "right" medicine= healing---> recovery(--->life without ED)
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MKR
nxk0707 wrote:
...she will sit in the lunchroom with faculty but monitor our d.  Our d will show her what she got and report what she ate and all in view of her counselor.


Someone on this forum emailed in the morning a photo of the lunchbox to the person supervising. In case something had been discarded. Even better, someone else handed the lunchbox to the school office for the supervisor to serve and monitor. 

You might end up playing hide-and-seek with the ED. It can get quite crafty. These are all very clever kids and ED makes them find a way out. It would be funny if it wasn't so serious ☹.


nxk0707 wrote:
Has anyone found that when treatment starts, they see purging at times when they did NOT see it before?  Like she denies ever doing it at school but was very free in telling us she did it at home, after school, at night and in the upstairs bathroom only.  Should we be on the look out for purging at school?


I'd thought all was well at school until the dean (year leader) phoned to say quite a few teachers reported that our daughter was taking 30-min toilet breaks (!!).

We had a family meeting with the dean (my first thought was daughter might get expelled for these unauthorized absences from class). The dean then alerted all the teachers, so toilet breaks were timed and/or monitored.

Our daughter's way of purging was exercising in the bathroom or taking the longest possible way there, to burn calories, like up and down the stairs a few times.  Makes me cry just remembering.

If your daughter is using the bathroom to bring up the food, maybe monitoring would be best.  Or a rule to use the bathroom before the meal and then no access to the bathroom for the first hour after the meal.

You will be sending a firm message to her ED thoughts that there is no option but to keep the food in. Your daughter may not be strong enough to put up resistance to ED herself.
Mum's Kitchen

14-y-o "healthy living" led to AN in 2017 and WR at 16. Current muscle dysmorphia.
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ValentinaGermania
nxk0707 wrote:
Thank you all.  I have never felt so overwhelmed in my life, ever.  I've spent decades treating kids with complex chronic conditions and in acute settings, but I have never felt so lost. 


I am so sorry to say that, but welcome in the club. This was the hardest thing we had to fight in our lives. I think nobody here was prepared to that. You feel overwhelmed, lost, lonely.
BUT: it gets better! With every kg you manage to get on and every loophole you close ED will get weaker and you will get stronger and find your power and courage again. When you are in that tunnel you think it never ends but when it gets better and you the light at the end you think that recovery is possible and you will get your life back. Once through you feel totally exhausted but also very proud. And you know that if you will ever need to do that again you will do that.

nxk0707 wrote:
Has anyone found that when treatment starts, they see purging at times when they did NOT see it before?  Like she denies ever doing it at school but was very free in telling us she did it at home, after school, at night and in the upstairs bathroom only.  Should we be on the look out for purging at school?


To be honest, with ED you should be looking out for everything everywhere. I know so many parents that first said "my d is not purging" or "my d is not exercising" and 2 weeks later they knew that she did. Close all loopholes. Better close more loopholes that were not used up to now than forget one. The faster and harder you beat ED the earlier you see that light at the end of the tunnel.
Keep feeding. There is light at the end of the tunnel.
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nxk0707
Thanks again! Just to answer some questions.  Her weight has not changed significantly in the last year.  Her growth chart shows normal weight tracking and her height is probably where it is going to be, given her maturity rating.  Her ED is characterized by: a. carefully logging everything she ate and its calorie content; b. giving herself a very small budget of calories through the day; c. "bingeing" usu!ally after school or at night and then purging in response; d. obsessively measuring her portions and using measuring cups to serve herself certain foods.

All of her labs and health tests were normal.  And she remained active in sports and with friends.  The biggest thing is the shame factor; she remains extremely resistant to discussing this with us and gets angry even if we express our concern.  

Question: How much do you all enforce "healthy" eating versus just allowing her to eat what many would call a normal teen diet, fast food, junk, etc.  She actually is eating pretty well this week, but at school ordered chips, soda, an apple, and a rice crispie treat.  Yuck!  But, it seems like high fat, high calorie to me so I didn't call it out.  thanks!
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Scaredmom2019
This is tough. We had to embrace "food is food". There is no good or bad food. I used to push apples for snacks; now I have a drawer full of chips, cookies and junk. Balance is key of course but to knock out ED they really need to eat all foods. It is normal to have fast food a few times per month but perhaps not daily. If she wants junk food, I would embrace it. Carrots and celery won't give her any caloric value and right now you need that. In time, more balance is needed but for now I would be "glad" she is eating junk. Many kids won't do that which is would be a sign of ED behaviors.
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Scaredmom2019
We might have chicken and vegetables one evening and taco bell the next. Always trying to get her used to eating all foods.
I'm preparing my D at 17 for a sustainable future of eating. Assuming she may one day be on her own, I know she's not going to cook healthy meals for dinner but she might grab fast food - that's college kids! Mind you,  my daughter prided herself that she never had a Happy Meal as a little one...so I get it! I  usually pushed healthy foods now I don't care. As long as it has the caloric value needed to be "alive". 
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