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floating
D out of hospital and in residential for 1 week.

As she cannot purge or exercise she has began for the first time to refuse to eat most meals for the last 3 days. She has always been fully compliant with meal plan so this is very scary for me.

She only allows me to stay for 20mins on visits. Prior to this week when in IP  hospital I spent 8 hours a day with her and if I was 5 minutes late she would be on the phone........

Today she asked the unit to call and ask me not to visit anymore...

Aware now she probably will not be well enough to spend christmas at home.

Feels like she will not recover.
No weight gain in 14 weeks : 6wks hospital, 6wks home, 2 weeks hospital
Still 39.7kg/BMI 14

My heart is broken she does not want me or sisters to visit

Any advise please


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Iaminspired
She wants you to visit!  ED does not.  Visit anyway.  If she tells you to leave after 20 minutes, stretch it out and stay longer.  Go get a coffee for 20 minutes and then come back.  Tell her you understand this is hard and you love her and will be there for her.  Sometimes I just sat in a chair with a book and waited until DD's mood passed and then we could have a conversation.

There are lots of posts here about our ED kids who tell their parents horrible things and then say later (well into recovery) that they didn't mean it and they were glad the parents didn't listen.  Plus, with a BMI that low, her brain is not functioning at full capacity and it sounds like her anxiety is very high.  So she is lashing out.

Good luck!  It is so hard!  You are doing a super job!

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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Sadmom
Oh Corkie,I am so sorry that your D is trying to exclude you. My D did the same thing for about ten days, and it broke my heart in a million pieces. I cried and cried, that she could treat me like that.

It isn't your D. As Colleen says, it is the ED pushing you away. I did give my D space and did not visit for a good part of that time, and do wonder if it was the right thing to do. They just aren't thinking at all clearly, and mothers are always the easiest to blame. 

Hang in there. It will get better. You are a wonderful, loving mother, and your D will come back to you.
Sadmom
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Charbonie
My d laid in her bed, depressed, with blankets over her head, refusing to eat for 24 hours on a couple of different occasions. I stayed in her room with her most of that time although she insisted that I leave, told me angrily to just leave her alone. I knew if I left it would reinforce that she was not worth staying with, that I had abandoned her, and had given up. This is what the voice in her head was telling her. Instead I slept on the floor on pillows next to her bed, and told her confidently (although I was scared to death) that I would never leave her alone in this, that I would never abandon her. I repeated this when she would ask angrily 'Why are you still here?' Inside I wasn't entirely sure that this wasn't making things worse, but our FBT coach encouraged me to do this.

Now that she is WR, happy, social and doing fine in school and planning her future we are closer than we've ever been. I know our coach was right. D tells me regularly what an amazing mother I am, and how much she loves me. D does not talk about those horrible times, however, I know that she knows inside that I am her rock and will always be there even when she tries hard to push me away. And she knows somewhere inside that someone thinks she is worth that. If ever there is a relapse, I am hoping that this solid foundation will help us.

I am telling you this to be sure that you know it is okay to follow your instincts. What she says is not how she really feels and not what she needs.

Best wishes,
Charbonie
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18 yr old d Dx Mar 25/14. WR June 2014. FBT/EFFT, Individual Therapy. In Phase III, eating intuitively, letting her plan ahead on her own re her nutritional needs for the day and how they fit into her schedule. Teaching her how to cook more for herself. Still watchful. Thankful every single day.

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Seabird

What the others said.

Your D is in a bad way and can't be responsible for herself, absolutely stay there with her, tell her you are not going to sit back and watch this happen to her and leave her.  She may have been quite unsettled/distressed by the change in her environment and routines?  

I recently told my son that I'm not just going to sit on the periphery of his life while he is so unhappy, I'm going to get him the help he needs and I'm not going anywhere, so I just ignore his attempts to push me away.   Just don't buy into it.   

In my head I have rationalised it by reminding myself that my S has a very youthful perspective and doesn't have the life experience yet to have confidence that things will get better for him.   Whereas I have a whole bunch of life experiences behind me so that I know that bad times are just temporary and there are things one can do to improve or change what needs to be changed, to make progress.     So whereas my S is acting on impulsive distorted emotions rather than reason, I'm not going to be influenced by those emotions, only by my own knowledge.   Therefore it helps me to forgive him instantly for all the rather horrible things he has said & done towards me.  And to keep us both focused on the future and recovery and the real world.

I hope that the residential unit your D is in, has a family-oriented perspective on recovery.   If your D isn't eating, would the residential unit continue to have her, or will she go back to IP?   14 weeks is much too long for no weight gain, I don't quite get if she has been fully compliant up till now with eating, why hasn't she gained weight?  The meal plan may not be adequate?   Sorry there's a lot of questions here but I'm just wondering what could be changed to get that crucial weight gain.

Stay strong and keep focused, your D needs you more than ever right now
 

Mother of 20 y.o. male diagnosed at age 16 with RAN, exercise compulsion, anxiety, depression & SH, FBT 4-5 mths to WR, WR now 3 yrs; suicide attempt 4-6 wks after WR,  IP 4 weeks.  Steady progressive recovery over past 3 years including support from psychologist on general wellbeing. Slow steady steps to success!! 

When your last bow is broken and your last arrow spent, then shoot, shoot with your whole heart
 [Zen saying}
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floating
corkireland wrote:
corkireland wrote:
My D is in a CAMHS unit, one third of the kids have an ED and they are experienced in this area but already I have concerns as we mothers do......
Unlike the medical hospital where I could sit with her all day every day which I did. I cannot do that here. Do not feel welcome to be honest.
BUT as some of you know Ireland is very limited in ED help and way behind other countries.


The bedrooms are upstairs and are not accessed in the daytime, we are put into a small visiting room that is not relaxing etc
 Not a place where you can visit all day and she is on total rest bless her. Mentally the worst I have seen her.

The reason no weight gain is her meal plan is 2000 calories and this has never changed even though I have explain, cried begged each place to up calories to no avail. Daughter will not allow me to change ANYTHING or add anything from this plan............. I know this is not enough,

She gained a little weight at home but began to purge and exercise so CAMHS decided she needed IP but even with a full medical/psych team of 25 staff for 10 kids they are not gaining anymore ground than I was alone with D at home???

Now is allowed to refuse meals at this low weight with no consequences of ensures? ?.......

At the end of my tether and frightened 


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Foodsupport_AUS
That sounds so tough for you, struggling to even get to see D, then her ED telling you to leave as well. 

I can hear your frustration with them the CAMHS unit and their apparent inability to recognise that she needs to eat enough to gain weight and not accepting food refusal. Do they have the option of NG feeding if she refuses meals? Requiring supplements may work for some kids but others will refuse supplements just as much as food. 

Hopefully they can get things heading in the right direction soon. 

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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sowego
Dear Corkie,
I am so sorry to hear what you are going through. 
I have no words of wisdom for you but just thought I would let you know about when
my D was offered a place in a CAMHS unit. On our visit to the place I remember asking about the calorie levels, as at the time we had a dietician have her on a 1500 calorie meal plan (ugh, another saga). They said over 3000 was usual , sometimes 4000. It was the head of the unit, a psychiatrist I believe, told us this. Could you ask for a meeting with the head of the unit an explain what your concerns are, and ask about the tube feeding policy? What weight gains do they expect per week? (We were told 0.8kg/week)
The visiting situation does sound difficult too, especially when you are cycling out there in December weather. I am sure your D will appreciate what you are doing for her in time.
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Trytrytry
Things sound bad, and all your cycling must be exhausting..........plus allowing you mind to wander with monotony of pedalling

What next? She will lose weight if refusing and knows there is no consequence. I would be asking the staff when she will go back to the hospital, not if. The current situation sounds untenable and so beyond the realms of common sense, I feel so angry yet you have to live it, I can only sympathise.

I know you have been shouting, trying to get some commonsense happening but is there even a management plan other than let her starve and be bounced around back to hospital in a few days when obs are unstable?

Am not from UK so can offer no practical ways to manoeuvre thru the useless system. Can you insist on NG tube when she ends up in hospital to at least gain a few kg to stop - I know you have tried.
If she is over 18 can you try to get some legal medical guardianship or. whatever it's called over there. I imagine it would be easier to get now if she is just getting repeatedly medically compromised - just a dumb idea, I just try and think of practical things that may be useful if not now but at sometime in the future
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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floating
Sowego did your daughter stay in Galway CAMHS?

Do you know if they use the NG tube in Galway CAHMS
 and are not even willing to use Fortisips but I have insisted so may now but Dietician will be gone for next 5 days

Terrified at present

Thank all for support


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sowego
No, she didn't stay in CAMHS unit. 
It did seem more parent friendly than what you describe, though I didn't see any parents around. They said they had more success with weight gain than with working on the psychology end of things. 
I asked them did they use tube feeding, and they seemed to imply that was a very rare occurence, or that it had not been necessary...sorry this is not more clear for you. I am not sure about this, but I think they need some sort of permission, to do this. I am pretty sure Irishjan's daughter was tube fed in Dublin. I will see if I can find any info on her posts. Can they do tube feeding in the hospital?- I presume they could if necessary. If they can, would she be better off there?
Its awful what is going on-I am so sorry.
And I cannot understand their issue with Fortisip-it beggars belief.

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sowego
Just went through Irish jans' thread- her D was tube fed in hospital, it seems they had to make her a ward of court to do so. 

Best wishes to you.
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Jasmine1
sorry you are having to go through this - it must be tough. Although I am new to this I am pretty sure it is ED's voice speaking. The last few weeks I have been physically shoved away by my daughter, screamed at to leave and she has told me she wants to die. Heart breaking but I know it's not her speaking - it is the ED and all triggered by food. So I have just remained calm and let the words go right over me. Then things settle down again. Perhaps you could still visit anyway - sit quietly in the waiting room and let the staff tell her that you are there if she needs you. And try not to be disheartened if she doesn't make an appearance and perhaps leave a loving message in a card for her. And as much as it might pain you - don't give up - keep going. She knows you are there for her then and I bet one day she will see you. One thing in my short experience of ED is that it changes the moods and makes the sufferers very volatile and it doesn't take much to stress or upset them. So you might find although she feels like that now - it could quickly change. Don't give up. But my heart goes out to you for just how hard it must be.
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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