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

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Stephani

Hi, my 15 year old daughter was just diagnosed with Anorexia Nervosa. 

The doctor was very firm about what she should do from now.
1) no physical exercise at school / outside school.
2) adult supervision during lunch break

My daughter is so upset because PE and volleyball travel team is her thing and if she cannot even go out for lunch with her friends, she has nothing to do. I’m worried that she might become depressed. 

I do understand that at 15, it’s not realistic for having a nurse or teacher to sit with her during lunch. 

Can anyone suggest alternative way to handle lunch time break? She does eat much more since diagnosis because she wants to get back on track and stay in the volleyball team. She promises to report what she orders / eats and send photos, or involve her best friend so she can report to me. 

Any thoughts?

 

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Elinor
Hi Stephani, this is my first post and no doubt one of the old hands will be along shortly, but in the meantime I’d say: if you have just had a diagnosis you may be where my family were in July- struggling to adapt to your new reality, and trying to hold on to your old one. Every child  is different, but if you’re like us then taking a deep breath and committing to recovery whatever the sacrifice may be is a good place to get to. Regarding exercise it does depend of your daughter’s weight, but it’s likely that no exercise has been advised because her current weight is a risk to her health. She will not improve until her weight does. If her weight is low her brain is not working and she cannot make decisions for herself. You will need to make them for her. 
Myself or my husband drive to our daughter’s school and supervise lunch in our car in the carpark. Because our daughter is unusually compliant we can do morning tea via FaceTime. Be aware that anorexia is so strong that it may cause your daughter to falsify reports and photos, and her friends may be best kept as friends rather than eating supervisors ( her anorexia will try to manipulate them in ways which can harm them, and your daughter)
You will get excellent advice and support through this forum
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ValentinaGermania
Stephani wrote:

I do understand that at 15, it’s not realistic for having a nurse or teacher to sit with her during lunch. 

Can anyone suggest alternative way to handle lunch time break? She does eat much more since diagnosis because she wants to get back on track and stay in the volleyball team. She promises to report what she orders / eats and send photos, or involve her best friend so she can report to me. 

Any thoughts?



It is no question of age. Your d has a life threatening disease and she needs help. My ds snacks at school were supervised by her teacher at age 17-18.
I do not know the legal rights in your country but in many countries the school MUST supervise sick kids if needed.
What about the mid morning snack (in between breakfast and lunch)? Is that supervised?

Alternative ways:
1) you can go and supervise lunch there (if that would be less embarrising you could do that at the school car park)
2) you can take her home for lunch (that is what we did, the teacher only supervised the morning snack in school)

She will promise you the blue from heaven but in my experience (and most parents here will report that) you cannot trust ED. What you did not see going into her mouth and being swallowed is normally not eaten. She can fake a lot with that. She can report you that she ordered xy and give the food to a friend or throw it in the bin. She can send a photo were she eats ONE bite and leave the rest on the plate or throw it in the bin (and send you then a photo of an empty plate but that does not mean she has eaten anything). Her best friend will have no problems to lie for her if she is a "best friend".

If you want to give it a try, then I would set a clear limit and ask for weight gain. If there is no weight gain next week no unsupervised lunch in school.
Keep feeding. There is light at the end of the tunnel.
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Foodsupport_AUS
Welcome to the forum, sorry to have to find your way here. 


It sounds like you have a great doctor. Someone who straight up says no sport and supervised meals is  someone who understands ED. It is a great start. They know that ED is going to be far too strong for your daughter when she starts gaining weight, starts feeling a full stomach. 

I agree with the others, age 15 or not she needs supervision for those meals. It may be that she does become depressed, it is an incredibly common accompaniment to ED, and may even be present already. She may say she lives for her sports, but it is not at all unusual for that interest to wain with recovery. 

Please ask lots of questions. 
D diagnosed restrictive AN June 2010 age 13. Initially weight restored 2012. Relapse and continuously edging towards recovery. Treatment: multiple hospitalisations and individual and family therapy.
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Enn
Welcome Stephani,

Eds are weird in that we need to take over even the basics when it comes to food. 
The upset at some of the restrictions in her life is normal and expected. It does sometimes gets a lot worse before it gets better. 
ED is being cornered and does not like it. 
I too think you have a great doctor who seems to understands Eds well.

Please read around the forum. 
Anorexiafamily.com
FEAST-ed.org and the resources there.

Please ask all the questions you have.
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
Hi @Stephani,

Welcome and thank you for taking action early in the process. 

As others have said, our trusty confident outgoing fun children have temporarily turned into sneaky crafty stubborn anxious agitated, even angry and violent gremlins in a matter of weeks.  Shockingly, we have had to suddenly park our great parenting ways and transform into vigilant policemen, rule enforcers. 

I say temporarily because this can be reversed, but with a lot of effort. We are on our toes until the child is refed and all signs of the AN are extinguished.

When I was first told how much weight my child had to regain every week, I thought easy-peasy, a pound a week should go up fast. I was not prepared for the level of resistance and the ensuing intensity of life at home and at school. But that determination that I should act fast kept me going, even though it took several months, rather than just weeks.

It might take you a while to get used to the new circumstances. Keep your eyes on the target, on the weight gain, you'll be glad you made the effort. 

One by one, all the loopholes have to be closed. I had to ask the school to ban my daughter from all the (amazing) sports facilities. Very embarrassing for her (she is still in denial) but we had no choice. And the school's response was amazing. All her teachers were briefed. Still, the school emailed me whenever she snuck in the gym or was seen running around the playing field. She had to resign from teams she had trialled for just a short while prior. Made me feel so sad, I grieved a little each time, but I could not let her weight drop. 

If this were a case of a broken limb, we would definitely wait until full recovery before the child was to rejoin the sport. I kept that in mind all the time. 

Sounds like your daughter is motivated and that makes the recovery easier.  But at this stage she will need supervision because you don't want to take chances and lose that weight gain. She is more likely to feel depressed due to malnutrition than from actual separation from her friends. Food will gradually lift her moods, but without the weight gain it would not improve much. 

There are heaps of ideas how to ensure steady gain and overcome any bumps on the way. The members on this forum are happy to share what works best.

Please let us know how it goes 😀.
Mum's Kitchen

14-y-o "healthy living" led to AN in 2017 and WR at 16. Current muscle dysmorphia.
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Torie
It sounds like you have a great doctor.

That's exactly what I was going to say!  That is such a blessing. xx

-Torie
"We are angels of hope, of healing, and of light. Darkness flees from us." -YP 
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mnmomUSA
You can trust your daughter.  But you CANNOT trust the ED.  The ED will lie straight to your face and be VERY convincing in the process.  The simple rule I followed is that if I didn't see it eaten, it wasn't.  The exception was only for 100% trusted individuals (such as my husband, a teacher who volunteered to supervise, and a few close friends).  

For my daughter, that meant that for her first few weeks back at school after getting medically stable in the hospital, I came and got her at lunch time and brought her home where she remained for the rest of the day.  Because getting better trumped school.  When she went back full time, she ate lunch with a couple of friends in a teacher's room where the teacher supervised.  Even then, I was skeptical because ED is very tricky and has lots of ways to "pretend" to eat when they are not.  So, I boosted her calories at home "just in case."  This was a couple of weeks and then we were on summer break, which was great because it really enabled me to supervise.  
D, age 18, first diagnosed March 20, 2013, RAN, at age 13 Hospitalized 3 weeks for medical stability. FBT at home since.  UCSD Multi-family Intensive June 2015. We've arrived on the other side.  :-)  D at college and doing great!
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PurpleRain
Hello, so sorry you need to be here. My D was 13 when diagnosed, it was February last year, she didn't miss any school but was supervised by an angel staff of the school, she even called once when d wasn't eating her snack and put d on the phone. That was never needed again since d got the message that we meant buissnes. She was supervised for the rest of the school year. During summer d went to theatre camp for a few weeks and had unsupervised mid morning snack, since it was shorter intervals, I just made sure other meals were extra caloric to compensate and I could always say by state if she had had her snack. Since September she has been able to have her snack and lunch unsupervised although there are times (extra stress, change of scenery, etc) where she needs supervision again. You know your d and her circumstances better of course. I hope my experience helps. Good luck!
13 yo d started to eat "healthy" September 2018, she had a growth spurt a bit later, followed by tummy bug. She started restricting breakfast and school lunch in January 2019 (that we know). We succesfully refed at home.
I have found inner strenght, patience and compassion that I did not know I had.
Never retreat, never surrender
keep feeding
 
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Stephani
Hello everyone. Thank you so much for taking your time and writing valuable advices and compassion. Surely none of you wanted to be here, yet, it is so empowering to support each other's problems. I am learning a lot about ED. I need to separate this from my daughter. It is not about the trust to our loved ones. 
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needhelp
Hi Stephani,

Like everyone else - I'm sorry you are here - but so glad you found this site - it helped (s) me immensely!

I was so excited to hear that your D is still motivated by volleyball.  My daughter also remained interested in her sports and that was the carrot that dangled in front of her.  As much as ED held on (and it is insidious) her desire to be able to do her activities was very strong.  I constantly dangled!  She was only allowed to do them once she regained the strength, and obviously had to eat. At first she was able to go and help (take pictures, sign people in, non-physically taxing activities). The competitive side of her wanted to perform well - but the ED side had other ideas.  Nevertheless, she did force herself to eat (often accompanied by lots of tears in the beginning). Although ED thoughts (not actions) do linger (she admits that her brain will sometimes say - well that has less calories -- however, at this point she chooses not to listen to that voice most of the time, and it has lost the strength to stop her from eating), she identifies it, knows it is not healthy, and moves past it (yes, at one point she began eating a lot more- and this site helped me with that when she became upset about that outcome). 

Maybe she could go watch her friends play volleyball?  If being present would be too painful, maybe someone could send videos for her to watch in private? Of course everyone is different - but once my D was home from college and in her therapies and realized what had happened to her - she wanted back in the game.  Please don't think it was that simple.  Once she WAS back in there were tears about feeling fat - but for her - she was eating - 3 meals, 3 snacks (eventually she had to travel out of town a few nights for her job- teaching her sport - and that was really hard for all of us - but with each victory the tears became a little less the next time).

Yes, of course she must eat and get her brain function back to where it needs to be -- I just wanted to share our story with you in case your daughter might respond in a similar manner.

One other thing that was very helpful - when she began eating meals she found it very helpful to watch videos on her computer to distract her.  Ironically, she watched baking shows -- but hey, whatever works.  My head was like a calculator just clicking away the calorie and protein count as she watched some gal making cakes.

Wishing your daughter an easy path back to her health, and for you the strength to help her get there.

Hugs : )
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rselzler
We had a similar issue and our high school was not responsive at first.  I finally put in writing to them that I understood my childs rights and their responsiblity to provide reasonable accomidations citing 504 education plans and the civil rights laws under the Rehabiliation Act.  I was not argumentative in any way but also was firm citing I understood my rights and that my wife and I would do anything in our power to ensure her needs were met.  

I suggest you not be passive and assume what you request is not possible.  School systems have to make much more burdensome accommidations for students with other disabilities and diseases.  You child deserves the same.

If you experience anything similar don't be afraid to do the same.  We got an immediate response setting up a meeting and 1/2 a dozen school employees showed up to discuss how they could help.  This included school personell monitoring to ensure she (1) had her food, (2) ate her food, (3) didn't discard any food, and (4) found a way to do so without making it evident to other childern OR even my daughter that they were doing so.

Good luck.  This isn't easy but its not impossible (because it can't be).
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Torie
rselzler wrote:
School systems have to make much more burdensome accommidations for students with other disabilities and diseases.  You child deserves the same.

So true!  They spend eye-popping amounts for the kids who have the "right" diagnoses.  (And parents who make them provide what the law requires.)  xx

-Torie
"We are angels of hope, of healing, and of light. Darkness flees from us." -YP 
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MKR
rselzler wrote:
School systems have to make much more burdensome accommidations for students with other disabilities and diseases.  You child deserves the same.
----
...  This isn't easy but its not impossible (because it can't be).



Torie wrote:

So true!  They spend eye-popping amounts for the kids who have the "right" diagnoses.  (And parents who make them provide what the law requires.)  xx
-Torie


That's a good way of putting it! This perspective is so necessary when we are cutting through the stigma of EDs (including any of our own initial embarrassment).
Mum's Kitchen

14-y-o "healthy living" led to AN in 2017 and WR at 16. Current muscle dysmorphia.
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ruoka
Hi,
No physical activity was really important for my daughter. She needed to regain weight to stay out of the hospital. I kept her at home for quite a few weeks after being discharged for the third time. As she regained weight things became easier. She would often complain what is the point. I would tell her to get back to the things you like.
In California, we can get a 504 plan put in place with the school to accommodate our child's needs. There may be something similar were you live. It was help for me because at the meeting the school psychologist offered to cover lunch and that has worked great. A couple times she could not make it and a staffer with less knowledge substituted for her. This didn't go very well once and I had to go the school.  My D was holding food in her mouth but had so much she could not talk . My daughter likes having lunch with the psychologist. Now though if the psychologist can't make it. I cover lunch.  I hope your able to find someone. Its helped us a lot.
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Torie
ruoka wrote:
In California, we can get a 504 plan put in place with the school to accommodate our child's needs. There may be something similar were you live.

504 is a federal law so it applies everywhere in the US. xx

-Torie
"We are angels of hope, of healing, and of light. Darkness flees from us." -YP 
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Stephani
needhelp wrote:


Yes, of course she must eat and get her brain function back to where it needs to be -- I just wanted to share our story with you in case your daughter might respond in a similar manner.

One other thing that was very helpful - when she began eating meals she found it very helpful to watch videos on her computer to distract her.  Ironically, she watched baking shows -- but hey, whatever works.  My head was like a calculator just clicking away the calorie and protein count as she watched some gal making cakes.

Wishing your daughter an easy path back to her health, and for you the strength to help her get there.

Hugs : )


Hi,
Thank you for sharing your story. It sounds like your daughter's interest is very similar to mine.
We love watching "British baking show" too!!! 
As you can imagine, getting back to volleyball team is very strong motivation for my daughter and I can clearly see her effort. 
The doctor said we should involve the "village" for her recovery. 
She is hesitant to use the exact "A" word, but she told her closest group of friends about her issue. 
So grateful with support we have already received from them.
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Stephani
rselzler wrote:
School systems have to make much more burdensome accommidations for students with other disabilities and diseases.  You child deserves the same.
----
...  This isn't easy but its not impossible (because it can't be).



Torie wrote:

So true!  They spend eye-popping amounts for the kids who have the "right" diagnoses.  (And parents who make them provide what the law requires.)  xx
-Torie


That's a good way of putting it! This perspective is so necessary when we are cutting through the stigma of EDs (including any of our own initial embarrassment).



Thank you for your sharing your thoughts and advice.
In our case, it is rather opposite.
School is really supportive and they want to help in any way, however, my daughter does not want any different treatment from school, teachers, and friends.
We have decided to go with the following protocol for the next few weeks, even the doctor and some of you in this forum might not agree.

1) My daughter will consult with me what she will eat during lunch. I will approve or modify her choice. 
2) We chose her best friend to report to me how much she ate. I got a big thumbs up from her mother as well. 
3) If she did not finish the whole plate, I will adjust after school snack and dinner. 
4) We will try this way for a few weeks and if the weight keeps dropping or condition does not improve, we will ask for adult supervision from school or I will take her out for lunch - which she won't like!
5) Even this method does not work, her friend should not feel this is her fault or responsibility.

I am more concerned with her psychological damage by stripping away her sports and lunch time break with her friends. Hope my gut feeling is right and she will get better.

Thank you everyone for your insight. 



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Torie
Stephani wrote:
2) We chose her best friend to report to me how much she ate. I got a big thumbs up from her mother as well.

I'm glad you made sure the friend's mom is on board with this.  I assume you spoke with that mom and made it clear her d can "opt out" at any time (no questions asked) as that can be a tough spot for a teen to be in, and having her opt our really tells you everything you need to know.  

Please keep us posted. xx

-Torie
"We are angels of hope, of healing, and of light. Darkness flees from us." -YP 
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Torie
No idea why I can't get the "quote" function to work properly.  Sorry! xx

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

I'm glad you made sure the friend's mom is on board with this.  I assume you spoke with that mom and made it clear her d can "opt out" at any time (no questions asked) as that can be a tough spot for a teen to be in, and having her opt our really tells you everything you need to know.  

Please keep us posted. xx

-Torie

Torie,

Yes, absolutely.
It was the most important thing for me to consider option. As some of you said, it is not a trust issue with your daughter, it's about ED controlling her brain. This mom & daughter duo is well informed and yes, they know they can opt out. 

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KLB
Hi Stephani. Welcome. This forum is a wealth of support and advice from some quite lovely people. 

If I may offer our experience, our S was 15 when diagnosed like your D. We kept him out of school for nearly a whole school year (hospital, refeeding etc) and when he went back he initially ate lunch supervised by the school nurse but now his uncle goes and they eat lunch together in the car, which seems to work better for him. His snacks at school are supervised by his form tutor and the head of pastoral care, who take it in turns. He is still not in a place where he can eat enough on his own. 

Regarding the volleyball/exercise, our S has a severe exercise compulsion but is also an elite swimmer so I understand the pain your D is feeling at having her passion removed. We initially thought we could let him keep swimming but we couldn’t get any weight on him and he became very ill so we stopped everything for most of the time he was off school. Once he was more medically stable, as we continued to refeed we kept getting stuck or going backwards and after much soul searching and deliberating we decided to start reintroducing some swimming before we reached weight restoration, which gave him an incentive and motivation to keep going, and seemed to help with managing the exercise compulsion. We’ve done this very slowly (not as slowly as I would have liked though) and so far we continue to make tiny steps forward. We’ve done things very differently to many by reintroducing exercise earlier, especially with a compulsion as strong as he had(has), but we felt it was right for him. I do live in constant fear that it will all come crashing down on us though. I am fighting hard to stop him, his coaches and his father getting carried away with it all. 

I suppose the advice I would give based on our experience is all exercise should be stopped in the early and middle stages of refeeding but the reintroduction of exercise in the latter stages is a decision individual to the child in question. It may be appropriate for some, for others it may be a disaster. We took a huge leap/risk, mainly because we couldn’t see any other option or way out of the tunnel, but I would advise to err more on the side of caution when it comes to exercise. S is still not permitted to take part in any exercise or activity that is outside his prescribed training plan, including PE at school, and we monitor his daily activity very closely. We have a contract in place which leads to training sessions being cancelled if he displays ED behaviours and is unable to stop them.


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