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yellowcaty

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Hi all

I have started a new thread as I am now getting desperate. We are still waiting for an IP bed and were told on Tuesday that there is a national bed crisis. Our team are unsure of how long we will need to wait, so we have to get on top of the purging urgently.

I have searched through lots of threads and we seem to be doing everything that is suggested. She doesn’t binge and only eats what she is required to. We monitor her all day and she is not allowed to leave our sight. We stand right outside the toilet, with the door open and can hear what is going on. I try to talk to her all the way through. She isn’t allowed to shower once eating has begun for the day. It is a real mystery as to how and when she does it. We have found plastic bottles full of vomit before, but have closed the gaps to prevent that. The only way we know she is purging is that she is continuing to lose weight. Last week it was 1.1kg. She also admits it to the doctor, but won’t say when or how.

If anyone can suggest anything else or has experienced they can share, I would be very grateful.

Yellowcaty
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Reply with quote  #2 
I am sorry that you are still struggling in getting a bed for your D. If she is still purging then loop holes I would look for is still the bathroom and any other place it could be hiding, outside somewhere/ garden/ pots? 

When my D was inpatient even though she never purged as well as supervising the bathroom they were not allowed to flush the toilet. Others insist on constant counting while using the toilet - any pause and you go in. Do a careful sweep to look for any areas where there may be things hidden and limit access to conatiners. 

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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

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Reply with quote  #3 
Hi yellowcaty,

I just remembered someone here wrote that his d or s purged through the window into the garden and someone wrote that his kid purged in the garden and burried it afterwards like a cat. Could that be possible?
Do you think she might tell it to the doctor if he asks her when they are alone? Sometimes they tell it to a non-family person because deep inside they want to be discovered. Or do you think she would tell it to you when you offer her a very big present, for example cards for a rock star she is fond of or something like that?
Try to exclude: Can she do it in the house? In the garden? In school? On a walk with a dog (if you have one)?
Could it be possible that she purges in the night when you are sleeping? Can you have a camera or a motion alarm or sleep with her?

I hope some others will join in with ideas soon. Keep us updated!
Tina72

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Torie

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Reply with quote  #4 
Oh dang, I hate these kinds of mysteries.  Do you check the trash for clues?  Maybe turn off the water to the bathroom so she CAN'T flush.  My guess, though, is that you have already closed the loopholes in the bathroom, and she is (at least mostly) doing this somewhere else.  

In the meantime, can you / did you up the calories?

Ugh ugh ugh.  This vile illness sucks so much. xx

-Torie

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

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Reply with quote  #5 
Hi

Thanks for your replies. The purging is a real mystery. She is not at school (been off since Christmas) and I am with her constantly. I follow her around the house and she unfortunately has no freedom. We have had to do this to stop things from becoming even worse. When we are out she is only allowed in a public toilet at least an hour after eating and this is limited. When she was being sick into bottles I had allowed her to work in a different room as long as I could see if she left. She would take bottles in and hide them after she had been sick. As soon as I found out I stopped this. The only time it could be happening is when she goes to the toilet, but there is no evidence. I haven’t asked her not to flush, which I think will be the next step.

She does beg us to reduce her calories to stop her from purging as she says that it just makes it worse. I must admit that occasionally I have given in. I think this was because she was going into IP and I couldn’t bear her to be so unhappy. I quickly realised that this was a mistake and it was just fuelling the ED. This week the doctor wrote down everything that she has to eat and when and made her agree to it. This was because she would argue with me over what the doctor said she should eat. The eating plan is still quite rigid, but it is the only way we could get her to eat at the beginning. She eats the same breakfast and lunch each day, but dinner is different and she doesn’t have any say in this. Her snacks are still 3 Forticip a day.

I think I have been focussing so much on IP that I am now panicking that she will be much worse before she goes in.

Thank you again for all your advice. I am just trying to take it one minute at a time.

Yellowcaty
martican

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Reply with quote  #6 
Yellowcaty - hugs! 
My daughter was a purger, and it is so tough and heartbreaking! What I did - she slept with me, no flushing after using toilet as i would inspect each time (you get to the point when you don't care plus they do it in the hospital, too), open bathroom doors and I sat so I could see her (with shower or toilet business), even if she wanted to check the bird nest outside, I would follow (as she had no problem to vomit on neighbor's lawn as she proved). I would check her bedroom for any signs as I heard some other kids kept boxes lined up with plastic for vomit their  closets. Luckily, my d didn't consider that as an option. I would also check garbage, just in case. Even when we left the house, just the trip from the house to the car in the driveway, I would watch like eagle bc she would just slightly bend at her stomach and stuff came out, on our lawn. Public washrooms - we didn't do much outing but I would go in with her. As I said, I stopped caring what other people think, and this way my d was not motivated to go to the bathroom with her mother attached to her. I will never see those people again anyway. At the doc's office - they understood why I went with her. My d is 15. I know, younger that yours but still at the age of being embarrassed to go to the toilet with her mother. When I thought we eliminated the purging, it came back 2 months later. What a sucker punch!  So all the rules set before took place again, for another 2 months until she stopped. It was like having a toddler you have to follow. I requested of her to stay and do her things only in the room where I was. She had to go to bed same as I did. She does still have urges, she said, so we work on it with T. I keep an eye on her but not as strictly bc she is at a better place, and maintains. I know the worst part of the day are evenings so that's when I spend time with her to distract her. Your D is so good at it that it can take 2 seconds to empty her stomach. It takes a lot of effort to plug all the holes to such professionals. 
yellowcaty

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Reply with quote  #7 
Thank you martican, it is so good to hear that others have been in the same situation and got through the other side ( although I would not wish it upon anyone).I think I need to up the supervision even more. Apart from going into the bathroom with her I do all of the rest. She is never away from me apart from at night and only then 2 hours after her last snack. As you said it is heartbreaking to see your precious child go to such horrendous lengths because of this dreadful illness. I think I am a bit lost at the moment and can’t quite get a full grip on everything.
Yellowcaty
Torie

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Reply with quote  #8 
Quote:
Originally Posted by yellowcaty
I think I am a bit lost at the moment and can’t quite get a full grip on everything.


Please don't forget that we are with you in spirit as you battle the beast.  You're doing great! xx

-Torie

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

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Reply with quote  #9 
My heart really goes out to you yellowcaty, you are having such a terrible time and I can hear in your post how desperate and lost you feel.
I was lucky my d did not purge (please God) so I can't help with that but it does sound as though the toilet trips may be the culprit.
However bad you are feeling on the inside, it sounds as though the things you are doing on outside are full of strength and you are doing a hero's job.
Praying for a miracle bed to pop up for you and continued strength in your battle against this horror ED.
xx


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17 yr old daughter dx RAN Jan 16, but starting restricting some months before that. Let go too early and now back home gaining weight again, slowly challenging fear foods and entrenched 'healthy, pure' eating habits and behaviours.
martican

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Reply with quote  #10 
Yellowcaty - when I unloaded my frustration on this forum upon finding out her second round of purging,  Torie wrote to me - feedback, not failure - I still remember 😉 It was an indication I needed to up my game instead of feeling defeated and like didn't do enough. We are doing more than enough already but this illness is so vicious that you can't even have an idea what it has up in their sleeves. I'll be keeping you in my thoughts! 
tina72

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Reply with quote  #11 
Hi yellowcaty,
I thought about what you wrote yesterday:
"She does beg us to reduce her calories to stop her from purging as she says that it just makes it worse."

I experienced a lot of times that when my ED d asked me NOT to do something (serve xy, increase calories,...) my real d wanted me to do exactly the opposite. So when she asked me NOT to serve pizza for the rest of her life she asked me to serve pizza soon in reality. I hope that makes sense in English...;(

So maybe you should tell her that you will need to increase calories as long as she is purging to give her a good cause to work with you to stop it.

I would fix on the toilet now, too. That is the easiest way to solve it. Hang out the bathroom door or ask her not to flush after toilet. If she does not do it, can you stop the water for that toilet? If she is purging into the sink in the bathroom you might not hear that while she is washing her hands, so you might need to control that, too. Easiest way would be hanging out the door I think. No privacy for all of you if you have no other loo but necessary. Or to go with her into the toilet and watch what she is doing there. Better for the rest of the family...[wink]
Tina72

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Mamaroo

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Reply with quote  #12 
Hi Yellowcaty, so sorry to hear about your d. My d used to chew her food and then spit it out. I would find chewed food in her socks! I didn't bother washing it, just bin it. They can be so sneaking ☹. Another tip I heard here was to have her sing the whole time she is in the bathroom, she can't sing and purge at the same time. As Torie said, we are here for you in spirit.
Sending you lots of virtual hugs 🤗🤗🤗🤗🤗🤗🤗

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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 months on Ensures alone, followed by swap over with food at a snails pace. WR after a year 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.
yellowcaty

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Reply with quote  #13 
Hi

Thank you everyone for your support, advice and words of encouragement.

Latest update - due to the bed shortage they now need to do assessments to prioritise beds. She should have had it on Tuesday, but now it is Friday. I’m not sure if we are any closer or just going through another process.

Things are still the same. I did manage to stand in the bathroom this morning, with my back to her. She hurled abuse at me and called me a ‘perve’. You never expect to go through things like this. Her nurse did say this morning, that once we have got through this we will be able to deal with anything life throws at us.

I am still just taking it one day at a time, sometimes one hour and at really tough moments, one minute! Having such wonderful support on here is keeping me going. Thank you
Yellowcaty xxx
tina72

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Reply with quote  #14 
Hi yellowcaty,

"She hurled abuse at me and called me a ‘perve’."
Her reaction makes me hope that you hit the missing loophole! Try to stand this no matter what she calls you. My d leaves the bathroom door open today although we do not ask her to do so. I think she will be sure that she is prevented of even thinking about purging that way.

"You never expect to go through things like this."
Yes. Nothing did prepare us for that. But I think that is similiar if you have a loved one with cancer. Just go through that tunnel. Try not to think too much what you are doing. Difficult problems need difficult answers.

"Her nurse did say this morning, that once we have got through this we will be able to deal with anything life throws at us."
That is so nice that she said that and oh so true. I experienced it as a big pack of power once I saw that what I did was working. Think about what if you could stop purging with that...that is the secret of FBT. Once you have learned how to close loopholes you believe you can fight any relapse or what ED will do next. And that is why it works long-term, because you have the craft stuff to fight it.

I hope they will go with her to the loo at IP, too. Ask for that. Here in Germany they did not because it was "privat sphere" of the girls. A big mistake for some of them...

I send you a big hug!
Tina72

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d off to University now 22 months after diagnose, still doing FBT and relapse prevention 
tina72

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Reply with quote  #15 
Hi yellowcaty,
the forum seems to be open again, how are you doing?
Did you have some success with stopping purging?
Tina72

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Kedi

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Reply with quote  #16 
Hi everyone, we are new to this ED world and your posts here are so helpful. Our D has been purging - for years it turns out - and we only learned of it on July 14 when I caught her vomiting after a meal and I thought she was sick. I pretty quickly understood that she had made herself puke, and within an hour she came to me and told me “everything,” that she had been doing it regularly and needs help. Woah, I felt like I had been punched and also very grateful that she told me. Turns out it is much, much worse than what she told us and has indeed been going on for years. I am trying to get my head around it. The loss of independence for her is a big thing for us all, but totally necessary. I am really worried about what will happen when she returns to School inn september, but I guess we will cross that bridge. For now we have our first appointment today at Overlook for evaluation. Sigh. Thank you all so much for sharing. It really has helped me get a better perspective on the ED and I feel empowered not so helpless. Thank you!
KLB

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Reply with quote  #17 
Quote:
Originally Posted by Kedi
Hi everyone, we are new to this ED world and your posts here are so helpful. Our D has been purging - for years it turns out - and we only learned of it on July 14 when I caught her vomiting after a meal and I thought she was sick. I pretty quickly understood that she had made herself puke, and within an hour she came to me and told me “everything,” that she had been doing it regularly and needs help. Woah, I felt like I had been punched and also very grateful that she told me. Turns out it is much, much worse than what she told us and has indeed been going on for years. I am trying to get my head around it. The loss of independence for her is a big thing for us all, but totally necessary. I am really worried about what will happen when she returns to School inn september, but I guess we will cross that bridge. For now we have our first appointment today at Overlook for evaluation. Sigh. Thank you all so much for sharing. It really has helped me get a better perspective on the ED and I feel empowered not so helpless. Thank you!


Yes. This forum and the people here are an absolute godsend. I am learning so much.
toothfairy

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Reply with quote  #18 
Here is some advice on purging I came across  from a leading expert in ED treatment.

1. Often, they simply cannot be left alone, ever. For anything. So – parents need to enlist help from friends/family/church etc to take care of OTHER things in the house – like laundry, food, siblings, pickups/dropoffs, etc, so that parents/caregivers can full-time focus on their child and keeping them safe. Family medical leave, etc, should be used to max. If not possible to leave work, then school or other family members have to substitute as supervisors when necessary. Kids need to be watched in bathroom, in all places of house. To make this workable, parents usually will have kid sit in a common area of home near them as they work and get stuff done. But no bathroom or alone time, ever, until purging wayyyyy better.
2. Parents usually have to employ same maneuvers at night, changing sleeping arrangements in house so that child is not sleeping near a bathroom, and a parent is sleeping near her on an air mattress or other bed, blocking the path from child’s sleeping place to door that could go to bathroom or somewhere else to purge.
3. If child is recently discharged, running/exercise would not be prescribed in any form yet. First form of activity would be school and no others would be added until purging under control and at a goal weight and in school with that going well, first form of activity would be PE or iceskating with friends or bowling or something social and mellow – NOT running.
4. Close followup is needed.
5. If you suspect purging, it likely happened. She/he will need to understand that if you suspect she/he purged, she/he needs to replace the food.
6. Nothing eaten counts unless a designated adult saw it get eaten – so her/him telling you that she ate a banana or anything doesn’t count – it only counts when it is witnessed; otherwise it will just be ‘extra’ and she still has to eat prescribed food in front of you.
7. These behaviors are dangerous and lethal. EVERY effort of you, your team, your extended support system, your school system, should be on containing them and treating them just as swiftly and stringently as you would if he/she was using drugs right in front of you, or running into traffic. She cannot stop on her own, and he/she cannot be reasoned with about them. The containment has to be all around him/her.
8. Online forums often helpful. Go online and speak to people who have been through this.
 

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