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

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floating
Hi All

My D as some of you know is in a CAMHS inpatient unit for the last 2 weeks but
Remains 39kg/BMI 14. She has been this weight for past 16 weeks....during this time she was in hospital 6 wks, home 6 wks, hospital 2 wks and current CAMHS UNIT at hovers at this weight whilst others are WR in this time frame.

After a lot of drama she was at the last minute allowed home overnight on christmas eve night.
After much excitement from us she was cross and ran to a friends

She returned in minutes but continued to plead to not go back to IP unit ever and this pleading did not stop for 3 days.

On Christmas day D  was in very bad state mentally which shocked us.
As I did not agree to her not returning to IP Unit she started screaming and hitting herself and tried to get out of front door. I explained that I loved her and could not allow this and 2 of us had to hold her to prevent her leaving. She is so painfully thin we were afraid of hurting her.

After 3 night sleepovers she said randomly "take me back now as you are going to anyway"
She keeps saying I just put her in there so I could go back to work and they can babysit.
This is making me feel so GUILTY.
As I Have gone back to work last 2 weeks BECAUSE she is IP. She is not IP so I can work. I keep telling her this but she is not listening.
I have just been on 12 week leave from work...6 wks so I could stay by her side 8 hrs a day at hospital and 6 wks feeding her at home.
For first time I feel so guilty

D is now phoning begging to be re fed at home and I just do not know what to do for the best anymore. Please help me ...........................


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sk8r31
I am so very sorry for what you are going through right now; it sounds really tough and I can imagine you are finding it emotionally draining.

From what you describe, the IP stay for the past two weeks has done nothing to help your d gain any weight.  This of course can not continue.

However, the stay at home and refeeding efforts for 6 weeks did not help your d to move forward either.

So, something needs to change, either at the IP unit or at home.  Ideally, more support for you to refeed at home might be worthwhile...but what could be done differently?  Do you have someone who can help you do this?  Or take care of other household tasks so you can focus exclusively on refeeding?  

I'm not completely aware of what help might be available to you via CAMHS if you were to try refeeding at home again.  I guess my point is that you'll need to develop a plan or strategy, tools and skills to help move forward.  

Please know that myself and others on the forum are holding you in their thoughts, and sending you very best wishes for strength and the support you need to help your d.  

I'm sure others will be along soon with more advice & suggestions.  Hang in there!

Warmly,
sk8r31
It is good to not only hope to be successful, but to expect it and accept it--Maya Angelou
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floating
Thank you sk8r31

My D was has been IP for 10 weeks in total without weight gain
At present she is back on 24hr supervision and still not gaining

She is not allowed to go to the bathroom for 1 hour after meals but my guess as I have told them is she is purging after the hour

She has lost over half of her hair which is waist length, it is coming out in large amounts daily....
Will she lose it all? Has this happened to anyone else


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trusttheprocessUSA
I think ED will make our kids say the very thing that will cut us to the core. My son said I only loved him when he was sick. That made me believe I hadn't shown him enough affection - sent me reeling. Now I know ED says the very thing that will allow it to keep its grasp on our beloved kids. We must ignore it and know deep down we know what's best for our kids. Don't let anything she tells you deter you from saving her life. One day she will thank you.
Son diagnosed @ 12.5 yrs old with Severe RAN 2/11. Co-morbids - anxiety, Active restriction for 3 months. He stopped eating completely 2x. He needed immediate, aggressive treatment from a provider who specialized in eating disorders, adolescents and males. We got that at Kartini Clinic. WR since 5/11. 2017 getting ready to graduate slipping lost 8lbs. Fighting our way back.
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galanick
Corkie,

My d had long hair and when she was very sick last year lost hair by the handful. Continued to lose hair for few month wr. But after that started coming back. Recently had a pony and had tons of fly always. Asked her if had tangles or something that caused her hair to break off. She was no that is hair that I loss coming back. So it does come back, body just needs enough nutrition.

I feel so bad for you. But, don't feel guilty. You have done nothing to feel guilt about. It is not d guilting you it is Ed fighting back. I know it still hurts , but try to separate d and Ed and it does not hurt as bad.

Can you try something different. Can Camhs provide you with in home support if they can't feed her inpatient. I heard of someone with Camhs having Ed nurse come to home and help with meals and supervision. Do you have any ideals how ip can change care to be more effective for d. Can they do an ng tube. Your d and you have suffered for so long. Prayers that you find more effective method of treatment

eeyore
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dad67
Cork,

Curious on the reasons IP seems to be failing at WR for your D?  Is she not compliant with the meals, purging or is the meal plan itself deficient given her needs?  Non-compliance and/or purging simply should not be an option in a proper IP setting (though admittedly I am not familiar with the protocols in the UK).  We were in a similar place with our D last year and she was very resistant to IP care, meals, etc.  She was placed on NG tube to ensure nutrition was getting in and eventually realized that the calories were going in no matter what the method.  She was medically cleared to discharge after about 4 weeks of very difficult refeeding (note we did this 4 times before we were able to have any success outside of IP).   IP was the worst experience of our lives, however, in the end it did accomplish its main goal which was to get weight on.  Seems the IP program needs more discipline to prevent any purging and ensure 100% compliance with daily intake - we had locked bathroom and supervised bathroom visits 100% of the time while in IP.  This should be mandatory for an ED patient.

My thoughts and prayers are with you and your D - you are not alone. 
Dad of daughter with ED
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floating
Trusttheprocess this is what I keep telling myself that to bring her home would be more harmful than leaving her in the unit as she only has 4 months till she is 18yrs old and has already said she will not be complying after this.

I have avoided guilt from the beginning by something I read on here......"my daughter did not choose ED and I did not cause it" I repeat this all the time but her constant comments about me returning to work are hurting deeply and she rather refuses visits or allows me 20 mins but hey she is stable and for that I am grateful ........


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Cassandra_UK
I'm sorry to hear that things have been so difficult for you, no weight gain after all that time must be so frustrating and distressing for you.
I don't have much helpful advice I'm afraid, being a sister rather than a parent, but the only thing I can say is that the NHS may not be being helpful now, but the adult eating disorder services are a nightmare. They generally put the emphasis on the patient to want to get better and gain weight and even to those extremely ill the help given is minimal. If it is an option, and there are things you can change to do it at home I would not expect the professionals to help you at all in four weeks I'm afraid. I really really hope that there is a way you can move forward and she can get some weight on.
All the best to you.
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Jasmine1

please don't feel guilty. It sounds like you have gone above and beyond to help beat this awful ED. My daughter is an inpatient too at the moment so I know how tough it is. I wish I lived nearer so we could help support each other.
I am too wondering why your daughter hasn't gained weight as an IP. The first 2 weeks my daughter lost weight as she was refusing most of her meal plans. So we had a meeting with the ED nurse who said the hospital care plan has to be shown to be effective in outcomes. So in my daughters case it wasn't - so then they then had to change the plan to be effective and told her they will have to NG tube her. As she is only 11 she freaked out ( and we were nervous about this too) so they gave her one final chance - as she was backed into a corner to eat or be tubed. And this last week she has actually gained a kilo by actually following her meal plan 
My daughter was on bed rest too and not allowed to the loo for an hour after eating. Then she has to talk to a nurse constantly while she is on the loo later - as the nurse waits outside so they know she is not making herself sick (although I know she doesn't do this they aren't taking any risks)
Maybe if she's not gaining weight the care plan needs to be reviewed and a different approach needed. While she is there - before she is 18- I just hope she can restore weight while she has the chance.
I wish I could offer more help or a magic answer but this illness tests all of us. Just wishing you well - and kind thoughts x

Daughter was age 11 when she started restricting Aug 2014, admitted to paed ward Dec 2014 for low BP, pulse rate and spent 3 weeks there. As they were about to NG tube her, she decided to eat again. After approx. 1.5 years on a meal plan and lots of toil, sweat and tears she is weight restored and has just been discharged from NHS care. It's been a very slow traumatic process but each day we are making progress.
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Foodsupport_AUS
Her pleading to come home along with the goading you about returning to work when you all need a roof over your heads, suggests to me that being inpatient is exactly where she needs to be. It is what ED fears the most. 

She has only been at this IP unit for two weeks and some of that has been home with you. To be fair they have not had a lot of time to get much weight on. She clearly fears that they will achieve those goals. Re-feeding at home did not go well, you tried prior to her first admission, and to this second one. As hard as it is to be separated from her things do need to change. 

I am also a single parent, and D has no contact with her father. She is an only child as well. As time has gone on, one of the things that she has explained to me is that she found it incredibly hard being re-fed at home because of this situation. She ended up mostly being re-fed in hospital. When there was just the two of us she could not turn from me making her eat into me trying to comfort her with regards to her distress. (She was mentally very unwell). Whilst inpatient I could offer her comfort, support her through the distress, as I was not the one requiring eating. She was still angry with me for making her be there, but she accepted that she needed to be. As time went on she was more able to accept me needing to feed her and she could re-feed at home. 
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.
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Torie
Corkireland - Would you agree it would be counterproductive for your d to feel guilty about this?  And if so, would you agree it is also counterproductive for YOU to feel guilty about this?  Whenever I feel the urge to guilt-trip myself, I remind myself that that serves ED's purposes while doing harm to my d's treatment.  

My d tends to blame herself for everything.  It would be much healthier for her if she would blame me instead.

So aside from the fact that you are a hero who deserves accolades instead of guilt ... your real d needs you to set aside the guilt.  It is getting in the way.

You're doing hero's work.  She will thank you one day.

Hugs
"We are angels of hope, of healing, and of light. Darkness flees from us." -YP 
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Sadmom
I understand your feelings of guilt, but people also must work. Not everyone can drop everything to stay home for months on end to feed their children, especially when some children are very difficult to feed at home.

I am hoping that there will be a big turn around for your daughter in 2015, and that her road to recovery is smoother than the past few months have been.  You have lots of people rooting for you, Corkie.  

Warm thoughts always, during these especially trying times.
Sadmom
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floating
Gosh thank you everyone for taking the time out to reply and offer support as no-one understands but you parents..........

Torie you are going through a lot at present and STILL you are offering me support xx
I never thought of the guilt as getting in the way and you are blinkin right if the ED is blaming me it is hurting my D less

Dad67 she does not complete every meal and there are no consequences........I have pointed this out to the unit and demanded they give her fortisips if she refuses a meal which they have only done once? the meal plan is only 2500k as it is and we all know this is not enough. She is not allowed to go to the toilet for 1 hour after meal but I too have said the purging is taking place after the meals but they say the nutrition is already taken by then, I disagree. So I have a meeting with them tomorrow and will be pointing out what you have said and push for changes , thanks for advice

We really need some weight gain right now and they are trying to put her on Olanzapine which scares me as one of the side effects is strange repetitive face or tongue movements
Has anyones child been on this and has this side effect occured??


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sowego
Dear CorkIreland,
So sorry you are having it so rough right now. They will need to make changes to what is going on, has the calorie level increased to 2500? I think you said before that it was lower. If so it is a step in the right direction. And you got them to use Fortisip, even though it was only once so far. See if you can build on this somehow in the meeting tomorrow. If the meal plan is 2500 calories they have to be sure she gets that in fully, and keeps it in. 
If it is any consolation my D did gain on that calorie level when she was BMI of 14, then she plateaued and we stepped it up. 
My thoughts will be with you tomorrow. Be the squeaky wheel.


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Trytrytry
The facial movements can be caused by the meds she's taking side effect due to the drug changing dopamine levels in the brain- but goes away when med stopped but it isn't a side effect as such it is expected especially at high levels. I don't think it is seen as a problem as it will go away when med is stopped and the consequences of not having a med that lessens anxiety, helps eating is far more important but do ask the drs about it.

When you have your discussion with the drs, when they say vomiting after an he is of no consequence etc - if all these things are not problems then why isn't she gaining weight? 2500 cal (if she is even eating that much) is obviously not enough. The evidence is in the weight. 1kg per week is what a hospital should be achieving and if not than their plan is not working and she needs more help whether she has more food, boost, at least eat everything or NG to make it easier. Ask if she hasn't gained by the end of the week can she get an NG tube with sedation to top up at least what she hasn't eaten and then some.
I would also push for them to get as much weight as possible before she turns 18 as things get harder and as someone else said, you think paediatric services are hopeless, they are non-existence and if there are any they exclude you or anyone else.

Don't feel guilty, ED wants to be somewhere it can get away with more and that must be at your house so I don't think taking her home is a good idea
I want a realistic dr and team, not someone who says what I want to hear and not a 'touchy feely nice' dr that doesn't have success.
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Iaminspired
Hi Corkireland

I agree with what everyone else, said - the guilt won't help you or your daughter and it was ED talking.  I think we've probably all heard shocking things from our children as ED knows it is losing ground.

It sounds like IP is the place for your D right now, even if they are struggling with figuring out how to help your D.  I hope you can get through to them in your meeting tomorrow.

When my D was IP, the consequence of not finishing a meal was it was replaced with liquid nutrition.  If not finished, then it reappeared at the next meal or snack.  Another refusal and the doctor was called to discuss an NG tube.  An NG tube was also an option to deal with extreme anxiety about eating.

Every morning each patient's weight was evaluated and the need to alter their calorie intake was discussed with the team, including the dietician.  No weight gain or a loss and they upped the calories.  Which they expected to do every few days anyway.

My D was started on Olanzapine while IP.  She never had any negative reactions to it other than fatigue (she was and still is very tired on it.)  She has been on it for about 4 months, started at 1.25 mg, upped to 2.5, then reduced back down to 1.25 (very low doses).  I noticed it helped to mute the intrusive ED thoughts within a couple days.  I was very hesitant to agree to it but it did help and gave her some relief when she really needed it.

My thoughts and prayers are with you for your meeting tomorrow.  I hope your D's team has some better ideas or are open to incorporating what you learn from this forum.

Colleen
Colleen in Ontario

Single Mom to DD#1 (20), Autism Spectrum Disorder (diagnosed at 16 1/2), Generalized Anxiety Disorder, Social Anxiety, Panic Disorder
and DD#2 (17), In solid recovery from Restrictive AN, Managing Social Anxiety, Generalized Anxiety Disorder, Panic Disorder, ASD, finished with IP and FBT, successfully managing school and life

If, at the end of my days, I can say I saved the life of not only my child, but helped to save the life of someone else's child as well, then I have lived a good life.
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Radcliffe
I'm not sure what is available to you via CAMHS.

We refed our d at home with help of a CAMHS crisis team who came to give us meal support (not every meal and snack but quite a few in the early days) I'm not sure we could have done it without them.

Our d had BMI of 11. It was touch and go whether she could stay at home or be inpatient.

She had to gain 0.5 - 1kg per week to remain at home.

We managed this with help of meal support. It was utter hell and I had to give up work for a long time but we did it.

Our d also had a low dose of olanzapine for 3-4 months and I think it helped her sleep and deal with ED thoughts a bit.

Our d also lost a lot of hair but as she ate it did come back and it is lovely again now.

Not sure what is going on in your d's inpatient unit but she obviously can't be allowed to leave any food at all!

So sorry for all you are going through.




Mum of recovering 16 year old daughter. 4 years into recovery.
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Foodsupport_AUS
My D also had olanzapine. It is commonly used to help with anxiety about feeding. I have not heard of any one who had the facial ticks which can be associated with this medication. The most common side effect that seems to be reported by other parents around here is sleepiness. My D had this too, and as a result came off it after several months. The other side effect which is often reported if you do a few searches is weight gain, I can't say it helped my D much with this.

I think the key thing that is the issue for your D at the moment is that she is not gaining weight. There is a lot of research supporting that there is no recovery without weight gain. I would be asking how are they planning on resolving this. To most of us it seems obvious that if she is eating 2500 per day then she needs more. If she is not finishing meals then something needs to be done to get that nutrition in. For some medication can get over that anxiety hump and help her eat.

When my D was inpatient if she could not complete a meal, refused a meal or did not finish on time then she was given a liquid supplement. In effect this meant for her she refused a meal and she got a supplement. She never started if she did not intend to complete, and she always made sure she finished on time. If the supplement was not completed within 15min or was refused then a NG tube was fitted for the next three days and the liquid supplement was given via that route. If no supplements were required ie. all solid foods for three days then the tube was removed. These sort of regimens are common in many ED places, each with their own variants. Some do supplementary feeds with NG tube overnight as a routine.
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.
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floating
Attending meeting today

Met D first who pleaded to be taken home and was very unhappy

The unit said she is the sickest child they have had and we discussed Olanzapine that I have so far not agreed to but today agreed that 2.5mg at night could be administered. Hopefully this help.

She is now on bathroom supervision 100% of the time and today was once again fully compliant with meal plan.
I pointed out after 16 weeks re-feeding including hospital, home and current IP unit no weight gain is very upsetting and unacceptable at this stage and asked them to PLEASE consider NG feeding. They do not do this on the unit but will be contacting her Consultant at the main hospital to discuss and are not ruling it out.............

D is upset today and they suggested I go after meeting as to visit may upset her further............I listened to my D outside the building as I waited for the taxi screaming. They later told me this went on for 1 hour and she was kicking and thumping the walls asking for me.

D phoned 10 mins ago and said she could not believe I left without saying goodbye. I think I definatley should of said goodbye, tut

The unit wanted to know if I would like to take her home for 1 night tomorrow for new years eve. After not returning for 3 days at christmas on 1 night home leave and begging to leave the unit since returning I did not think she would get leave again this soon.
Now I am left to make the decision knowing she may not return or not without great difficult. What a blinkin nightmare!!!!

Thanks for listening so in despair...................................how do you all do this??/


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Iaminspired
We all do this one day at a time, just like you are doing it.

I'm glad you got a tiny bit of progress at your meeting today.

I think your D crying for you today is probably your real D who wants and needs you there, in spite of the nasty things the voice of ED is saying.  It is so hard to figure out which one is talking.

As for taking her home for New Year's Eve, that one is a tough call.  The first time my DD came home on a 12 hour pass, the doctor made it very clear that if I had trouble getting her back, the hospital would call the police to assist me and that it had been done before.  Since you've already had trouble getting her back, and just last week, I think you might be in for a real battle getting her back to the hospital.  Three more days out could be very bad for her attempts to gain weight.  I'm wondering if it might be too big a challenge for her to manage, too much change in being IP, being home, being IP, being home and then being IP again.  Personally, I would have a very well defined Plan B in place to get her back to the hospital if she refuses to cooperate, preferably a Plan B where the hospital offers some support, like sending an ambulance or something.  As hard as it may be to be the only one in the unit on New Year's Eve, it may be the best place for her.

My thoughts and prayers are with you.  You sure are having a rough go of it.

Colleen
Colleen in Ontario

Single Mom to DD#1 (20), Autism Spectrum Disorder (diagnosed at 16 1/2), Generalized Anxiety Disorder, Social Anxiety, Panic Disorder
and DD#2 (17), In solid recovery from Restrictive AN, Managing Social Anxiety, Generalized Anxiety Disorder, Panic Disorder, ASD, finished with IP and FBT, successfully managing school and life

If, at the end of my days, I can say I saved the life of not only my child, but helped to save the life of someone else's child as well, then I have lived a good life.
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Torie
Hi Corkireland - I'm not sure if you are able to see them, but there are some real positives in your report, tucked in between the heartbreaking news bits.  I know others have gotten real help from olanzapine; I hope it will be as much of a help to your d as it has been for many others.  You are being a great advocate for your d - it's wonderful that they are starting to listen to you.  I'm so frustrated for you that you have to teach them about the merits of NG tube and all.  Aargh.  Hard enough to be the mom without having to do all the thinking for the "professionals" as well.

Hang in there!!! You - and your d - will get through this.  One day, one meal at a time you will get your d back.

Please remember to take care of yourself while others are caring for her.  She needs you to keep up your strength.

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