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



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


Reply
  Author   Comment  
pettelly

Caregiver
Registered:
Posts: 35
Reply with quote  #1 
We're having a bit more success with refeeding now and getting my D to eat something. But I have a new concern. We're doing the LSUYE and encouragement and leverage etc etc but we have had a few occasions where we've really pushed our D to eat (as told to do by clinic too) and she's had some kind of insane psychotic episode. Screaming, shouting, punching herself, scratching herself, trying to get to the kitchen to get a knife, mumbling that she must be punished as she will gain weight. 
I mean total loss of control for hours. My husband even called an ambulance. 

How we do we deal with this??? Do we continue pushing?? She's so terrified of these episodes that it makes her even more scared to eat (because it happens usually when she's really pushed herself)
Foodsupport_AUS

Avatar / Picture

Lead Moderator
Registered:
Posts: 3,157
Reply with quote  #2 
It is great that you are getting some more food in. 

Unfortunately this can be normal for some children. Remembering that after meals can be a difficult time for eating disorder thoughts, that is those thoughts will be punishing her for eating, even if she herself wanted to eat, can be really helpful. 

This is where looking at distractions can be really useful, so looking warm jackets, weighted blankets, games, crafts (no sharp things), movies, music can all be used to help distract from the thoughts. My D used to always say that distraction didn't help, the problem was more that the thoughts were too strong for the distraction, but I could see she remained calmer than she was without them - so keep on pushing with them. 

If the loss of control is too great then an ambulance may be the best course, but either way she still needs to eat. Making it so she feels there is less choice about eating can ease this a little too.

__________________
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.
Torie

Avatar / Picture

Caregiver
Registered:
Posts: 4,478
Reply with quote  #3 
Quote:
Originally Posted by pettelly
How we do we deal with this??? Do we continue pushing??


Here's the thing:  She MUST regain the weight she has lost.  There's no other way to get your d back.  So I think the only other option is a higher level of care.   She can go through this at home or she can go through it somewhere else, but either way, it's a tough, tough journey.

When you're going through hell, keep going.

It does get better, though.  Remind her of that often.  She probably won't believe you, but that makes it all the more important to keep telling her.  

With time - and food - these episodes will become milder and less frequent.  It helps to keep a journal of some kind so you can look back and see the progress.  Otherwise, it can be hard to tell that you have actually moved to a different one of the rings of hell.

Hang in there.  Come here often.  Take care of yourself.

And remember that we're with you in spirit.  xx

-Torie

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

Avatar / Picture

Moderator
Registered:
Posts: 659
Reply with quote  #4 
Dear Pettelly,

I'm glad you are having more success with getting your daughter to eat but sorry to hear that she is punishing herself afterwards.

I know this sounds so sad, but please take the knives or medications or razors or anything else your daughter might be able to self harm with and put them somewhere she cannot access. Unfortunately urges to self harm are part of the constellation of symptoms for many kids, my daughter included, and it sounds as though your daughter is grappling with and voicing those urges after eating.

Can you compare the meals which she ate and was not as distressed after, with the meals where she became very distressed? What was the difference? Were the foods different? What do you and your husband think made the meals where she experienced less distress work?

For example, my daughter had an easier time in the beginning eating foods which did not have a lot of things mixed together in them. Nothing could be touching on the plate. As she got better and put some weight on there was improvement but it was slow going and it was only after some specialized therapy for that particular issue that things went better. 

I kept a recipe book of the meals which were successful and served them over and over and over again. The requirements were that they had to have enough calories and be nutritionally appropriate and that she would eat them. Then we built upon those meals and added more variety and new things slowly. I was chided by the FBT therapist for "not ripping the bandaid off" but the most important thing was to figure out how to get the food in and keep getting it in.

What happened when your husband called the ambulance? 
What does her team say about the episodes?

Kali


__________________
Food=Love
mjkz

Avatar / Picture

Caregiver
Registered:
Posts: 1,264
Reply with quote  #5 
Quote:
How we do we deal with this??? Do we continue pushing??


Yes, you do.  The only way out is through if that makes sense.  As scary as the behavior is, it will get better with more weight gain.  Keep up the distraction and use emergency services if you need too.  Make sure she can't hurt herself (lock up all the sharps and any medication even the over the counter stuff).  I hate to say this is normal but it absolutely is.  Their poor brains are just overwhelmed with anxiety and it comes out in ways like this.

As scary as it is, you can't back off because she has to regain the weight. It will never get any better if she doesn't.  Kali had some great suggestions and I too found that the simpler the better at first with refeeding.  I don't know if she is on any meds but we found meds so helpful even in the short term to help with the anxiety.  I also had a room set up that was to help cut down on stimuli.  Dark, pillows against the walls (my daughter was a head banger), music if she wanted it, weighted blankets.  When my daughter was out of control and overwhelmed like you describe, I would help her into the room and it really helped.  I would keep an eye on her of course to make sure she wasn't hurting herself but it was so helpful to keep her calm.
ed_newbie

Avatar / Picture

Caregiver
Registered:
Posts: 262
Reply with quote  #6 
We had the same type of episodes during early stages of refeeding. They will improve over time as weight goes back up and brain begins to heal. I would give my d a light massage on her lower legs to help her calm down after meals - this also helped to keep her still to avoid burning precious calories.
__________________

"Lineage, personality and environment may shape you, but they do not define your full potential."    Mollie Marti  

ed_newbie

14 yr old d diagnosed with AN late December 2015 at the age of 12 after a 23 lb weight loss during prior 3 months. Started FBT/Maudsley at home on Christmas Eve with support from amazing local nutritionist specializing in ED and trained in FBT. WR Feb 2016 and now chasing growth and taking one meal at a time.
tina72

Caregiver
Registered:
Posts: 245
Reply with quote  #7 
Hi pettely,
that is totally normal ED behaviour. As much you fight the ED, it tries to fight back. You did a great job to get her eat something and gain some weight. Go on with that. These episodes will get less with every kg she is gaining. We all had that screeming and crying and throwing plates and food and scary experiences with knifes and forks. Try to get all sharp things out of reach. We even had to put the paperclips away ;( If she is banging her head, make her wear a bike helmet durig meals or tell her you will add a spoon of food to the plate for every "bang". This behaviour is very hard to stand. But if you get through that, it will get better. ED is noticing that there is an enemy...[wink]
Kalis idea is good: maybe there is special food that is connected with this behaviour. Try to make a list for 2 weeks.
You are doing the right thing. It will be better in some weeks. The only way to get there is going through hell, sorry. But there is light at the end of that tunnel.
Send you a german hug to denmark!
Tina72
EC_Mom

Caregiver
Registered:
Posts: 238
Reply with quote  #8 
We had it too. It's awful, truly horrifying. You need to stay calm and consistent so that even in her terrible distress you can be the steady rock of hope and confidence. I held my d sometimes so she wouldn't bang her head on the wall. Definitely lock up sharps, medicines, poisonous fluids, and don't leave her alone. I slept on the floor in her room. And yes, if it's too scary or out of control, call 911. It did get better, but it is superhero parenting you are doing here.
rose08

Caregiver
Registered:
Posts: 52
Reply with quote  #9 
Hi Pettely.  I am so sorry you are experiencing this too.  My D had what I refer to as "demon effect" episodes that could have come out of a movie, it was as if she was possessed! Also, always after eating, or even just the thought of eating.  This mostly happened at the beginning of the re-feeding process and occurred less and less as we progressed.  Please keep on trying, I know how tough it is, I never thought it would improve, but it did and does for others too.  Please make sure you are taking care of yourself too (easier said than done, I know!) - I think Tina once said to me its like an endurance marathon, it can wear you down, so steady, calm and consistent is the key.  Watching YouTube videos really helped my D. I really read up a lot and (Toothfairy has posted lots of very informative links on this forum) to find out what was going on in her head when she got like that, and the fact is this illness literally torments them.  You are doing an amazing job just getting to where you are, I think any mom on this forum is a supermom. All the best xx
pettelly

Caregiver
Registered:
Posts: 35
Reply with quote  #10 
We had another psychotic episode and ended up having to call an ambulance because I couldn't control her and keep her safe, she was punching herself, throwing herself at the wall. My husband was out with the other kids so I was on my own. She was saying the whole time that she needs to be punished, she's a fat pig and she needs to be punished. She ended up going to the psychiatric hospital where they gave her some anti-psychotic medication. Discharged and home now with some medication to get through tomorrow if needed and to call clinic on Monday. This is insane. She's had one bowl of rice and chilli all day (and that's what set this whole thing off). There doesn't seem to be a pattern other than having eaten more than she had intended to. Distraction often works when it's manageable but doesn't touch it when it's this psychosis. The Dr at the hospital said she's seen it before with anorexics but that my D has really got it bad very quickly (she only even started to diet in mid-July!). I'm so scared and sad for her. 
aloha

Caregiver
Registered:
Posts: 52
Reply with quote  #11 
We had similar outbursts screeching etc
learning to separate is absolutely alien to us but that what we did. The inner dialogue is very powerful and will overcome your daughter but once wgt increases the inner voice will quiten we not there yet but slowly
my regards to you .
mjkz

Avatar / Picture

Caregiver
Registered:
Posts: 1,264
Reply with quote  #12 
Quote:
The Dr at the hospital said she's seen it before with anorexics but that my D has really got it bad very quickly


Meds helped us quite a bit.  My daughter would never take olanzapine but is on a small dose of seroquel which has helped her anxiety and outbursts similar to what you describe so much better.  Glad you have a plan and support on how to handle this.
tina72

Caregiver
Registered:
Posts: 245
Reply with quote  #13 
Hi pettely,
read the posts of rose08, that will give you some hope. She had the same experience some weeks ago and now her d has changed. Just because of gaining a bit weight.
It will get better. Try to go on refeeding and get in her as much as you can. She will get crazy about any amount so make it worth it! You can stand it better when you know she had a 500 or 600 calories meal for that. And the sooner she gaines weight the sooner this hell will end.
Even if she does these insane things, she has to eat. When ED experiences that you are a rock and not moving any bit it will experience that there is no way not to eat and than it will be easier. My d said one day: I know that you will make me eat anyway. It is not possible to starve any more. Then I can eat because its not my fault.
When she cries that she has to be punished and that she is a fat pig try to hug here and tell her: "It is not your fault. Mummy told you to eat that. You had to do this. It is not your fault." That may calm her down a bit because it pushs the guilt away to another person (sorry, this has to be you [wink]).
Try to get some help for the meals, maybe a friend or family member can come around when your husband is not at home. Its too hard to stand this alone...
Go on. You are doing the right thing. Believe me, there is a light at the end of that tunnel. But you must go through there to get there.
Tina72
pettelly

Caregiver
Registered:
Posts: 35
Reply with quote  #14 
The thing is that it's not always directly after meals. We've had 3 episodes so far where she is psychotic, absolutely and completely out of control. One came after a smoothie (called ambulance but got her under control so cancelled it), the other after a glass of milk as a bedtime snack (pinned her down in bed until she fell asleep from exhaustion) and the last one, the worst one, where she was blue-lighted to the psychiatric hospital in an ambulance because she was uncontrollable. Even 2 burly ambulance men struggled with her trying to punch herself, knee herself in the head, scratch herself. Her poor face is covered in bruises.

Yesterday I saw this building up again. She'd been out with a friend and had 2 cookies and had been stewing about it all afternoon. She tried to eat dinner (bless her, she is trying so damn hard) but she started losing control again. I quickly made her take a pill and it worked but it also knocked her out so only half a bowl of soup eaten and no bedtime snack - but if she'd have lost it, there would have been no chance of her eating in any case so probably better. 

We do try distraction and it works for the most part but sometimes the anxiety and guilt and the urge to punish herself for eating are too much and she just loses control. 

I do not understand how a child can go from perfectly healthy and normally functioning to being medicated for psychosis in a psychiatric hospital in 2 months!!! How is this even possible?!
Foodsupport_AUS

Avatar / Picture

Lead Moderator
Registered:
Posts: 3,157
Reply with quote  #15 
Unfortunately this is expected. It is a terrible illness and can come on very quickly. The effects of starvation and malnutrition on the brain can be profound as can the intensity of the ED chatter in their head. This TED talk by Laura Hill may help you to hear it as she is hearing it : 


It is tough insisting on the food, perhaps it may be easier to stick with some form of routine that she finds less distressing. That is meals are only as required and expected, without extras until she is eating well and gaining weight, then trying to add in the variety later. 

__________________
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.
pettelly

Caregiver
Registered:
Posts: 35
Reply with quote  #16 
I can't predict when these episodes will happen. I meant to say in previous post the last one was because she'd had a good lunch (after refusing breakfast and snack). She'd refused afternoon snack as well so it was quite a few hours after she'd eaten that she kicked off, it's not necessarily straight after a meal but the thoughts and anxiety sometimes build up and up. It's usually because she'd eaten more than she'd intended. 
sunnyday

Avatar / Picture

Caregiver
Registered:
Posts: 182
Reply with quote  #17 
I thought I'd chime in and also say we had this type of behavior during refeeding.   My d was "out of her mind" after a successful meal.  Almost immediately within the first few weeks of day treatment and refeeding she tried to self-harm in the car and at home.  I was in total shock....completely out of character for my smart, quiet, studious, polite daughter.  It was exactly like she was possessed.  Thankfully we were in a day treatment program and they helped assess situation. We did end up in the psychiatric ward for a few days in response to suicidal verbalizations.  Best way to handle is with a calm manner but also with short, direct commands. (if you continue to do this then this will happen...) Sometimes the sufferer is beyond hearing you.....and many times they won't even remember what happened afterwards.  This illness is just horrible.  Nutrition will help eventually....and meds/therapy too.  In early stages it is must something to calmly "get thru".  Ativan helped "in the moment" to help quiet the ruminating thoughts...and eventually Seroquel for us.

Eventually we had to do an adherent DBT program for my d.  The adherent DBT helped with the extremes of emotional disregulation.   I think anorexia masks other things....anxiety and depression.  Our kids don't have coping skills to deal with eating disorder hell...sometimes we don't either.

Just think....there are clinicians who quit dealing with ED clients because it is too hard...but parents keep on keeping on.  We can endure just about anything for our kids as long as there is hope.  There is definitely hope....food and nutrition first.....thinking of you.

__________________
Daughter diagnosed 2010 (9th grade) with AN/Binge/Purge.  D. had brewing ED thoughts as early as 4th grade. Constant battle with ED from 2010-present.  Co-morbid anxiety & depression & suicidal thoughts & self-harm.  Most recently in intense DBT/ED program outpatient . Weight restored but not happy about it.
frazzledmum

Caregiver
Registered:
Posts: 20
Reply with quote  #18 
I had this with my d as well, she took an overdose as punishment for herself and us after we did the magic plate and spent 5 hours to get her to eat. Spent the following day in A&E. It is so frightening how quickly this illness( I have called it a demon) take over. I have no advice as I am in a similar situation to you, and will watch this thread with interest.
mjkz

Avatar / Picture

Caregiver
Registered:
Posts: 1,264
Reply with quote  #19 
It might be the result of fluctuating blood sugar levels.  The lower the blood sugar, the more psychotic they can appear.  Higher blood sugar levels can cause all kinds of symptoms that look and feel like anxiety too.  When my daughter was having the same kind of issues, her physician was great in sitting down with her and talking to her about how having high and low blood sugar levels can lead to the episodes.  She hated them too so it really helped motivate her to start eating more regularly if only to avoid the episodes.
rose08

Caregiver
Registered:
Posts: 52
Reply with quote  #20 
Hi Pettelly
I hope things have settled abit for you, it is so scary when your child becomes taken over by this thing. It can and does happen literally just over just the thought of food. My D (12), intelligent, levelheaded, 'A' student with zero previous discipline issues tried to escape my moving car over the THOUGHT of something I had bought for her to eat. At the beginning of refeeding she physically fought me, tried to climb over our 6 foot wall to escape, I actually considered writing our neighbours a letter to explain the daily ear-piercing screaming so they would not think we were harming her! It could be the hardest thing you might ever have to do but keep trying, even just that one extra bite is worth all the screaming she has if it means she will have another the next day and the day after when she sees you are not backing down to her ED. I used to cry every night, stunned and exhausted.... it got better though, a few good days with the bad, more good days and a few bad, an absolute horrendous day and then a whole week of good.... but the good eventually outweighs the bad days and it becomes bearable and you can suddenly laugh and mean it. Please hang in there, take good care of yourself, pace yourself and keep trying. My D is taking a low dose of risperidol - indicated for her impulse control ("demon effect behavior"!) and anxiety She sees a gp and psychologist weekly with a psychiatrist now on board to help manage her medication and hopefully get us further into her recovery. Thinking of you. Ps. And trust your instincts always to keep your D safe xx
pettelly

Caregiver
Registered:
Posts: 35
Reply with quote  #21 
How long with refeeding until you are expected to have a result? We're doing a bit better than last week (where she lost 700g in 3 days) but we are going back to clinic tomorrow and I'm pretty sure she'll have lost as I don't think we're near the calories for maintenance let alone gain. Hopefully they can give us somethign for the psychosis/anxiety- she was given olanzapine but it knocks her out completely. 
EC_Mom

Caregiver
Registered:
Posts: 238
Reply with quote  #22 
I did indeed notify our neighbors and the local police. If it were me hearing a girl next door crying, "Don't make me, I don't want it!" I would imagine the worst, not a Snickers bar. Police were grateful; the mental health liaison said she has a list of conditions police are aware can cause violent and psychotic behavior and anorexia was not on it until I told her.
deenl

Moderator
Registered:
Posts: 853
Reply with quote  #23 
Hi pettelly,

Quote:
Originally Posted by pettelly
she was given olanzapine but it knocks her out completely. 


We seem to be very sensitive to medications in our family so we have a protocol of starting on very low doses and increasing every 4/5 days until the desired effect is achieved (obviously not with things like antibiotics!). It can also help to take medications that have sleepiness as a side effect about an hour before bed. 

I know of a kid who was much improved on 2.5mg dose of olanzapine. For some, the effective dose can be very low. Maybe it is worth trying again with a lower dose at night?

Hang in there

Warm wishes,
D

__________________
2015 12yo son restricting but no body image issues, no fat phobia; lost weight IP! Oct 2015 home, stable but no progress. Medical hosp to kick start recovery Feb 2016. Slowly and cautiously gaining weight at home and seeing signs of our real kid.

May 2017 Hovering around WR. Mood great, mostly. Building up hour by hour at school after 18 months at home. Summer 2017 Happy, first trip away in years, tons of variety in food, stepping back into social life. Sept 2017, back to school full time for the first time in 2 years. Happy and relaxed, just usual non ED hassles. 

  • Swedish proverb: Love me when I least deserve it because that's when I need it most.
  • We are what we repeatedly do. Excellence Recovery, then, is not an act but a habit. Aristotle.
  • If the plan doesn't work, change the plan but never the goal. (but don't give up on the plan too soon, maybe it just needs a tweak or a bit more time and determination [wink] )
  • We cannot control the wind but we can direct the sail.
tina72

Caregiver
Registered:
Posts: 245
Reply with quote  #24 
Hi pettely,
to answer your question about time:
The first time is the most difficult because you have to learn how to get in her as much as she needs to gain weight.
If you got that and she is gaining you will see a little change with every pound/kilo she is gaining.
The first weeks there are only bad days, then you see some good days and soon there are more good than bad days, as rose said.
Do no give up. You are doing the right thing. This is not your daughter, this is a demon called ED.
"I do not understand how a child can go from perfectly healthy and normally functioning to being medicated for psychosis in a psychiatric hospital in 2 months!!! How is this even possible?!"
This is a brain disease. Her brain doesn´t get what it needs to work. The body gives all the power to the heart and the other inner organs. Brain is the looser. It is the same thing when someone has diabetes: if there is a leak of sugar they talk stupid things and can´t control themself, because the brain cannot work any more.
Try to give her as much fat as possible. You can hide a lot of canola oil in a fruity smoothie. The brain is 80% fat and it needs a lot of fat to recover.
If she looses weight, check the meal plan, than you still have not enough calories. It is sometimes an unbelieveble amount they have to eat.
Some people here had good experiences with waking the kids up early and giving them a smoothie while nearly sleeping to have not so much fight. Maybe you could try that?
Send you a hug!
Tina72
pettelly

Caregiver
Registered:
Posts: 35
Reply with quote  #25 
She was weighed today and has lost weight - about 300g - which is what I expected given how much she has eaten. She is eating more than she would if we didn't push her but not enough. Snacks are very small or refused. Meals are usually eaten but not fully. Any calorific drink with meals totally refused. We are trying to add fats wherever possible but she's just not eating enough volume despite our efforts - last night we sat at dinner from 6.30 to 9 with half a bowl of soup eaten (at least added cream and oil) and then from 9.30 to midnight on a smoothie which ended with her having an apple. 
Anyway, we discussed with her team in the clinic and they have put her on a waiting list for day hospitalization. I'm very grateful that they are not basing this on her weight or physical condition alone (which is still OK) but on their observations about how quickly she is deteriorating in her eating. I think we're in a vicious circle of weight loss reinforcing the weight loss and anxiety which we're finding very hard to break.I just hope she gets a place quickly, I think we need it. 
Previous Topic | Next Topic
Print
Reply

Quick Navigation:

Easily create a Forum Website with Website Toolbox.

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

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

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

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

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

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