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

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nvrgvup

Where to begin?
My daughter is currently a Junior in high school
She has always been an extremely shy(social anxiety) and compassionate but competitive individual. We have a very stable and healthy family.
She was diagnosed with Celiac disease in first grade.
She became a vegetarian in third grade - gave it up a year later - and then started again in 5th grade.  She had always been a healthy eater.
She participates all three sport seasons (soccer, indoor track, spring track) and excels in track.
She had a boyfriend all thru freshman year that broke up with her at the start of the summer.
 
I have always found exercise to help when I was down - so the summer between freshman year and sophomore year we spent a lot of time running and walking to help with the sadness from the breakup.
Sophomore year - what a struggle, still trying to recover from breakup, feeling lost, struggling in school - by the time Spring came around she appeared to be doing better. 
Her track times were wonderful.  She had a new boyfriend
She seemed to be coming into her own - BAM stress fracture - out for the rest of the season.
 
Wondering if the restriction had started in high school contributing to the stress fracture and we just didn't pick up on it.
After the stress fracture came along she wanted to do aqua jogging and join the gym since she couldn't run.  She was afraid of gaining weight.  Stupid me I agreed.  I had no idea.
She became obsessed with watching the calories burned on the workout equipment.  I thought ok as soon as she heals this will stop. 
Summer came and I noticed she wasn't eating - brought her to the pediatrician she is 5'5'' - and her weight was down to 119.  Not out of the normal range but lower precentile  than were she normally fell.
She looked very thin.  Pediatrician told her if she lost anymore weight she would not be able to play soccer come the start of school.  And her stress fracture was taking longer than normal to heal.
Started to see therapist to help with anxiety.

Fall - Junior year starts she is playing soccer (less running in soccer than track) her weight goes back up to around 127 - she looks good.
But - noticing she is not eating breakfast - she never really ate lunch in school as she has always had a hard time with school lunch (due to celiac and kids, when little, making fun the foods she liked)
Once night came she would eat dinner and continue to eat till she went to bed.
BAM - Thanksgiving time frame - caught her purging at night.  Took her to the pediatricians and started working on trying to find her help.

Her weight was 125 so weight wasn't bad but the disordered eating was horrible and I just never realized how bad it was - thought it would pass.
We went away for Thanksgiving - what a nightmare - I read the Maudsley book and thought ok we can monitor this. 
All bathroom activity was monitored and she was required to eat breakfast and lunch.  Dinner had never been the issue. 
We should have stayed home - I had no idea how much anger and sadness and total meltdowns the ED could cause.  I have never seen her like this  So hard to do away from home.
Got back home and she continued to attend school - we required her to eat breakfast, sent in a lunch for school, and monitored dinner.
She did not think there was anything wrong with her eating.  So very resistant to changing anything.
Well I never realized how tricky ED could be -she was purging her breakfast on her way to school.  Throwing out her lunch.
I was sleeping on the floor outside her room to make sure she wasn't purging at night.

December 2015 - she was pulled from school and sent to IOP for three weeks.  Her weight remained stable at 124. 
We thought once we get the purging under control we were good.  She was complacent and said she was going to follow her meal plan and she didn't want to be like that again.

January 2016 - back at school - since her weight was stable she was allowed to participate in indoor track.
Since she had only been restricting for a short period of time and the purging had only been going on for about a month before we became aware - we thought she was okay and had control of this.
HOW DUMB COULD WE BE
We started seeing a nutritionist.

February 2016 - took her to pediatrician (she was looking thin to me) 117 and HR was 43. 
She was put on exercise restriction.  Pediatrician agreed we could try Maudsley as we left the IOP center with a bad taste in our mouth.  They were very disorganized.
She wasn't getting the time with the nutritionist as she was supposed to - she found the groups were very repetitive and really only felt she got anything out of the individual therapy.  And that was so limited.  It also made it very difficult for her to keep up with school.
See nutritionist on weekly basis.
See pediatrician for weekly weight check
She is enrolled in DBT training class
See therapist on a weekly basis (not an ED therapist but one she really connects with - so hate to change)

5 Weeks later.  Her weight went up to 124 the first week and then right back down the following week.  She is still 117.
What I can't fathom is why she isn't putting on weight.
Breakfast (3 eggs with whipping cream and 1/4 cup cheese cooked in a Tbs of coconut oil.  A yogurt (80 calorie one as she claims she doesn't like the taste of the whole fat) and either a piece of fruit or glass of juice
snack - fruit and Cheerios (sent with her to school)
lunch gluten free wrap 4Tbs humus (with added oil mixed in) feta cheese, 1/4 cup almonds, fruit
snack - granola bar
dinner - Buddha bowl (cup of quinona cooked with coconut oil) - roasted beets (coconut oil), Kale (sauteed in coconut oil), 6 Tbs humus, feta cheese, Tbs sesame seeds
snack - muffin (1000 calorie one) yogurt

She is very resistant to drinking caloric drinks

We monitor breakfast and dinner.  We started out having lunch monitored by the school nurse - but then her boyfriend agreed to monitor her and he has texted me a couple times saying she won't eat.
Those couple times was when she had a bout of nausea.  So I trust he is watching her.

So just got back from February vacation - she took her snack up to her room - I came up because she forgot her fruit and her yogurt was gone as if she ate it in 2 minutes.
HMM - she usually takes 10 minutes to finish a yogurt as she eats so slow.  I checked the toilet and low and behold found remnants.  The ED blatantly lied to my face.

So she is adamant she is not purging.  When on vacation I followed her a couple times into the bathroom (she would go immediately after eating)
I did not see her purge.
I do not see the bloated purge face she used to have
I check the home toilets religiously and I see no signs of purging.
Is the eating disorder just fooling us?

Even if she was dumping snacks at school she should have put on weight.
So back to full monitoring - she has to sit with me for 1.5 hours after each meal and each snack. 
She is back with the nurse for lunch though she isn't monitored afterwards.
I can't guarantee the school snacks are being eaten - but I will give her an additional snack when she gets home.
Not sure how to monitor the nighttime exercising.  Any suggestions?  She is 17 and does not want to sleep with her mother :>[wink]

She had the potential to run collegiate track as she has made states numerous times.  The ED is throwing it all out the window. 
She is devastated by this as she always wanted to do a collegiate sport - but even this is not enough for her to rally and fight.
We tell her if she is not better - we will not send her away to college, she will have to go local.

Are we wrong?  She keeps telling us that 117 is in the normal range for her height.  And it is.  Should we not be pushing so hard?

She has typically tracked in the 50th - 60th percentile for weight.

I am lost.
She is on Prozac - was on Lexapro but it caused her to not be able to sleep.

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cjac16
My d went through a similar situation.  I got to the point of cleaning the toilets several times a day, actually getting my head in the bowl to sniff for the slightest traces of eau de vomit and thought we had cracked it.  Not so!  She had mastered the art of vomiting into a container, putting the lid on and hiding it until the middle of the night when she would dispose of it.  We now have no locks on bathrooms, locks on all food containers, and for a while I slept in d's room with her.  She was not allowed to run a bath herself as she used the running water to hide her vomiting (although she was an expert at vomiting almost silently).  I have had to hide all toilet cleaners so she can't clean the toilet after purging.  I sit outside the bathroom until she has finished.  She stays with us for at least an hour after every meal.  Things are improving.  She is not purging now, has gained weight and she is gradually returning to the girl she was prior to AN.  We did have to take her out of school due to the anxiety which escalated to an all time high.  She is now being tutored by the school at home, eating well and looking forward to starting college in September.  

It is so tough but I think making it as hard as possible for the AN behaviours has really helped.  It took us a while to realise that it is a 24 hour 7 days a week battle to tackle ED and that education has to come secondary to our d's health.  She is doing so much better working at home where the stress levels are lower and we can monitor her 100%.  Would it help to reduce the number of hours/days she is at school at the moment?


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nvrgvup
She was devastated when we pulled her from school to go to IOP last semester.  It took her so long to get acclimated to High School as she is so shy.  Now that she has made friends, she hates to miss out on things.  So not sure what that would do to her mentally.  I can't say if she is purging or not.  She keeps saying she hasn't purged since IOP and is very offended that we do not see her progress there.  I just hate how sneaky the disorder is and how it makes you question and not trust anything.

My D also found it so difficult to catch backup at school as she missed all of her midterms and was given very little time to make it up - so her grades sort of tanked - and that in itself was devastating to her.

As far as sniffing the bowl - Yeah I do that.  When she was purging before she was so messy I could see it.  Now I look and look and just don't see anything.  I was thinking of cleaning it then putting some sort of mark so I would know if she cleaned it.  She has a large closet and she changes in there.  Yesterday I heard a little cough while she was in her closet and thought oh no she is purging in there.  I followed her when she came out to see if I could tell if she was hiding anything in her pockets.  I didn't see anything and when she left for school - I searched her closet.  I couldn't find anything.

So after her weight in yesterday - we told her sorry - we are monitoring everything and there is no going to the bathroom or anywhere for 1.5 hours.  I said we are not accusing you of purging - we know the ED lies to us about dumping snacks (because I caught that and had proof) .  Since you are not gaining any weight what so ever - we are closing as many loop holes as possible. 

Her pediatrician says he cannot tell if she is purging or not.  I guess I thought I would be able to tell if she got the swollen cheeks again - but I don't see it - so am not sure
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hopefulmama
nvrgvup - 

Welcome to the forum.  I am sorry you have to be here, but you will find amazing resources and support.  I know that my d would not be recovered, were it not what I learned here.

I can relate to what you are going through. My d was 17 when she was diagnosed. She was an elite dancer in a pre-professional troupe. She wanted to minor in dance in college. She had to give it up to get healthy and she has never gone back.  It WAS very painful.  However, she has been able to move forward and build a new life, even if it looks different than the life I thought she would have before she got sick. 

Here are some thoughts/ideas for you as you get started:

 - I have no experience with Celiac's, but I'm sure that makes this all more challenging.  As a mom of a recovered ED daughter, I think of "healthy" eating much differently than I did before my d got sick. Healthy eating is ALL foods in moderation. That means desserts and fats too. When you are genetically pre-wired for ED, ANY restriction is a bad idea.  The fact that your d wanted to be a vegetarian as young as 5th grade gets my spidey senses up. In order to truly get healthy, my d had to give up ALL exercise.  This is not unusual on the forum. I too have always exercised and felt that it makes me feel better.  That is what my d always claimed too. But ED is sneaky and we had to cut it out entirely before she could return in a non-obsessive way. This was also necessary for my d to restore her period. Before ED, I ran marathons and ate "healthy."  Now I exercise less obsessively and enjoy desserts and wine.  My ideas about food and exercise did NOT give my d an ED.  However, changing my thinking was necessary for her to get recovered.  

 - I had to really change my thinking about weight. Even at her lowest, my d was only just below a "healthy" weight per useless weight charts. Evidence shows that kids have the best chance at beating ED when they get back to or above THEIR historic weight percentile.  Because your d was a vegetarian so young, I would wonder if the restriction started even earlier than you think.  If so, this could have warped her historical weight range. Here is how it looked for us.  My d was always in 75th percentile, like since birth.  After we figured out the ED, we got her back to 50th percentile.  It was a "healthy" weight and she looked great.  But she was still very sick and the ED was very strong. We stayed in this hell for about a year.  The wise people on this forum kept telling me she probably needed more weight.  I didn't see how that could be true.  If my d was suffering from clinical depression and panic attacks and suicidality at 50th percentile, how was getting to 75th going to make it better.  It is one of the reasons EDs are so tough to treat. Everything about them is counter-intuitive. In fact, we didn't see real and lasting recovery for my d until she got back to, or even above, 75th percentile.  Based on a quick glance of the CDC charts, based on your d's age, 50th-60th percentile would be 125-130. It's also important to note that the weights go up every year until age 20. 

 - As for your d saying everything is OK and getting mad at you, that's par for the course.  It helped me to see this as part of the disease.  Her brain is compromised and she CAN'T do this on her own or even admit that there is a problem.  In all of my time on this forum, I have never run across a parent who suspected their child was purging in the face of strong denial from their child where the child was not actually purging. It is hard because my d was very mature and wise for her age. She made good decisions.  So when she told me everything was OK and I was over-reacting, I doubted myself.

 - I also can relate to the anxiety about school.  Because of ED treatment, my d ended up missing the second half of her junior year of HS and most of her senior year  She went into treatment again in jan of her senior year and never went back to school.  I wasn't sure if she would ever be able to graduate or go to college.  I had to let go of all of that and realize that the only thing we had to worry about right now was beating her ED.  In the end, she did graduate. We kept my d home from college the first semester.  Although she was weight restored and in recovery, we knew she needed more time.  To say it was an unpopular decision would be an understatement.  Now though my d says it was the best thing we ever did. We tried to live life and try to recover at the same time for a year or so, but it never worked.  In the end, we had to try it a different way and it was the only way that worked for us. My d's ED was very public at her HS and it was all very painful.  She lost all of her friends.  Again though, we had to get her better first and then she could rebuild her life. 

 - Another way I found helping a YA d beat an ED counter-intuitive was in the whole independence issue.  I DID have to sleep with my d for months and months.  It was because of the severe suicidality and the strength of her ED thoughts at night.  It was very abnormal, but necessary...and she hated every minute of it.  My d also had to eat every single meal at her IOP program or with me for months and months.  It IS true that they have to learn how to do it on their own.  However, it takes a long time before the brain is healed enough (at proper weight) to get to that point.  I even had to watch my d take her medicine every day.  She hated me and everything abort this time!

One idea for you is the one week intensive program at UC San Diego.  I looked into it for my d and thought it really could have helped get us all on the same page and come up with a plan for moving forward.  In the end, we didn't go because my d deteriorated too quickly and she went residential. Here is the link:

http://eatingdisorders.ucsd.edu/patient/ift.shtml

Also, if you tell us where you are geographically, we may be able to provide some other ideas.  A word of warning that many (if not most) treatment programs are hopelessly outdated and not practicing evidence based treatment.  You are already on to this if you have read up on Maudsley. In the early days, my husband thought I was crazy because I kept questioning the "experts."  I found I had to educate myself and become an expert to get my d the care she needed to recover.  At times that meant going far away. 

It is overwhelming for sure, but also empowering.  YOU ARE your d's best shot at beating this.  We had a hellacious few years.  It hurts too much to think about really.  Now my d is studying abroad in South America.  Her ED is not a part of her life.  There was lifelong anxiety (that I didn't realize before the ED) and we have gotten her help with that too.  The amazingly imperfect life she has built for herself today DOES look much different than what I would have envisioned 5 years ago, but she is healthy and happy and we are very close. 




Enjoying my 23 year-old daughter's achievement of active recovery that was made possible by the resources and education I found on this forum.

Don't give up hope!
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Torie
Hello, and welcome. You've already received great advice - I just wanted to add one thing: Athletes typically have BMIs that are much higher than non-athletes. I know one boy athlete who is sheer muscle - every year his mom receives a letter from the school notifying her that his MBI is above the normal range, but he's one of the leanest kids around! So when someone starts exercising a lot more, their BMI needs to go up accordingly.

So glad you found this forum. Keep swimming. xx

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