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RebeccaEleanor Show full post »
RebeccaEleanor
Thought things were going too well.  Total melt down over lunch.  Spilt some soup - accident, rushing to heat it up before an online school session.  Huge upset about how to replace what was lost, did eat the replacement food but huge distress and that feeling that things are now going to be tense for a while.
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Enn
This is par for the course. And it does not erase any of the good that has happened . Hold onto the good, temper the bad in your mind. It is just the way it  is and you are doing fine. You really are. 😊
When within yourself you find the road, the right road will open.  (Dejan Stojanovic)

Food+more food+time+love+good professional help+ATDT+no exercise+ state not just weight+/- the "right" medicine= healing---> recovery(--->life without ED)
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Enn

You stated in a previous post that you are feeling the team is not doing well by your d. Do you feel comfortable confronting them about exactly what you feel d needs and how they have come up short? 
I have learned through my own experiences and through the many voices here, that things can move forward when you communicate effectively what the plans should be. Please speak up and don’t be worried about repercussions. If the focus is placed on the care of the patient it can be a powerful and positive discussion.

When within yourself you find the road, the right road will open.  (Dejan Stojanovic)

Food+more food+time+love+good professional help+ATDT+no exercise+ state not just weight+/- the "right" medicine= healing---> recovery(--->life without ED)
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RebeccaEleanor
Thank you for your replies, I couldn't get time to myself over the weekend.  My daughter has an appointment with the psychiatrist via zoom on the 7th July.  They are new and we haven't met them before.  I am trying to make sure it is not a review meeting as there is nothing to review, a team that barely knows her or us.  I want her to have CBT with them, she is about 90% height for weight and can talk rationally about it when she wants to. My daughter is sometimes overwhelmed by sadness for no reason.  She tells me but can't explain,  I don't know if medication would help but I don't want her to have it without a proper assessment.  Not just oh your weight isn't going up on our chart exactly as projected so we are going to do this, which is what it felt like when they suggested it before.  I asked if my daughter could have therapy - they said there weren't the resources, hopefully there will be now.  This is what we continue to ask for, the responses start off positive, get progressively more wishy washy and then vanish.  
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RebeccaEleanor
Just feel a total failure, that I have let my daughter down.  The psychiatrist is arranging for her to start on olanzapine and I know rationally that it might help but there is a part of me that feels as though this indicates that I am a total failure.  That I have failed and that I should have been able to do better to make her better that I have failed her.  I don't know why I feel like this but all I want to do is cry.
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Enn
RebeccaEleanor,
I am saying this with love and caring to you. Take a step back and picture you are talking to a friend who is going through this and their kid needed meds. Would you really think they are a failure because their child required medications? I don't think you would. I would not. You got her help, and care and a psychiatric assessment. That, has now borne some fruit to say, "hey let's try some meds and they may help". I think that is a great on your part and you should  feel proud. If your child needed surgery, you could not do that by yourself. If your child needs meds, why not? I really feel that meds are important. They have a place, just like IP has a place, residential has a place. Like for other medical illnesses, it could be meds, and surgery and chemo and radiation and psychotherapy etc. I understand worries about side effects and the doctors should inform you about all side effects, but remember on a balance, doctors only prescribe what they know well, and how they work and why they would try them in each case. 

If we could do this "naturally"  ( that word bothers me from a medical point of view- but this is not the time nor place to get into that) then there would be no need for antibiotics etc. I know you understand this. My d needed meds and when she was on them, gosh they really helped her AND me!
I know many don't need meds and many do. That is just reality. It does not mean that they are worse off. It does not mean they will not recover, it does not mean YOU did something badly, it just is. Some diabetics need orals and some absolutely need insulin injections.
Remember too, without meds she is not doing well. I hope that helps. 
If we could do so much on our own there would be no need for medications. And we know that many meds for certain illnesses, like heart disease, saves lives. I just wanted to reframe it for you. Look at it as a positive. It may be the breakthrough she needs to get moving forward. 
Sending a hug and please remember to take care of your needs as well. 

When within yourself you find the road, the right road will open.  (Dejan Stojanovic)

Food+more food+time+love+good professional help+ATDT+no exercise+ state not just weight+/- the "right" medicine= healing---> recovery(--->life without ED)
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Foodsupport_AUS
I am so sorry that you are feeling so down. I am sure that you know rationally that you cannot MAKE your daughter get better. This illness is very complex. We can help our children, support them, feed them. Ultimately though even if we do everything right there still are more ingredients in helping your D's thinking change, along with helping her brain to heal. The best treatment is sometimes not successful, while for others poor treatment even seems to help. 

It is OK to cry about things. We all shed many tears over this illness. I try not to think about how low my thoughts were when my D was at her most ill. They are not good memories. Be kind to yourself, you are doing what you need to do to help her get better, and that sometimes includes medication.
D diagnosed restrictive AN June 2010 age 13. Initially weight restored 2012. Relapse and continuously edging towards recovery. Treatment: multiple hospitalisations and individual and family therapy.
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RebeccaEleanor
Thank you, I know that rationally this is a move forward, we have been left waiting for a plan for months being fobbed off and left waiting week after week after week.  The new psychiatrist seems really good and interested in my daughter but zoom makes everything more difficult.   Part of my stress has been not knowing if they were going to admit her not admit her, that doesn't seem likely now and I am glad and I should be happy.   I love her so much and the thought of her being in a hospital a reasonable distance away was upsetting me, it always felt wrong to me and the new team feel that admission is not needed.  Everything seems to be upsetting me at the moment.  I am crying while I am typing this which isn't me I can normally think things through but today I just can't.  I am just glad that I can say how I am feeling here as I can't be like this around my daughter and my husband doesn't understand and I have no family near by so feel so isolated at times like this.
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Adlih64
Hi RebeccaEleanor,

I would have avoided medication if not absolutely necessary but olanzapine made the world of difference for my daughter.  It allowed her to regain her required weight, have restful sleep overnight and continuous self harmed stopped quite shortly afterwards.  She also has periods of overwhelming sadness and suicidal ideation.  Olanzapine wasn’t a miracle cure but seemed to lessen the intensity of guilt and disturbing thoughts and as such has allowed her to remain at home whereas back in March the situation was unsustainable at home for her own safety.  It definitely helped with weight gain also. My daughter has been on this since Mid March and as of last week the dosage was reduced with a view to stopping completely over the next couple of weeks.  I believe they only like to use it as a short term medication and hopefully this will be enough to help your daughter through a really difficult stage.  Now that my daughters weight is restored and her thinking more rational she has been offered CBTE which I know you were interested in so maybe this could be a means to get her to that stage?  Although our next hurdle is getting her to agree to this as she’s adamant that she doesn’t want it!  Please don’t feel like you have failed your daughter, she will still need you as her main support.
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RebeccaEleanor
They are planning on assessing her for therapy so we will have to see how that goes.  It is reassuring to hear that olanzapine helped your daughter and that hopefully it will be for a short time. I know that there is a good chance it will help mine and that it will be reviewed regularly. I just need to get my thoughts together and get on with it.  I just want this nightmare to end.
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Enn
When in the middle of a storm you cannot see the end. I get that. Are you able to do something nice for yourself? Self care is so important. Also if you are struggling with your emotions/ stress/ depression please talk to your doctor. Many of us needed professional interventions ourselves. I did for for EMDR and therapy. Some parents, maybe many, do suffer from PTSD. There is no reason to go it alone. If you need more aid please reach out.
I hope you can settle a bit now that you seem to have a good team on your side. 
When within yourself you find the road, the right road will open.  (Dejan Stojanovic)

Food+more food+time+love+good professional help+ATDT+no exercise+ state not just weight+/- the "right" medicine= healing---> recovery(--->life without ED)
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Enn
@RebeccaEleanor, just wondering how you were doing?
Sending good wishes your way.
When within yourself you find the road, the right road will open.  (Dejan Stojanovic)

Food+more food+time+love+good professional help+ATDT+no exercise+ state not just weight+/- the "right" medicine= healing---> recovery(--->life without ED)
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RebeccaEleanor
Hi Enn, Thank you for asking.  I am feeling better today, there are just times when everything seems so overwhelming.   Waiting for the team to review the blood results before we get a prescription for her medication.  Everything always seems to take ages to sort out as it is all being done remotely.
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Enn

I am glad you are feeling better. It is so hard waiting. I hated the weekends as there was less structure for all and I could not get in touch with the professionals. I can be overwhelming for sure. It took me by storm. Sending my best. 

When within yourself you find the road, the right road will open.  (Dejan Stojanovic)

Food+more food+time+love+good professional help+ATDT+no exercise+ state not just weight+/- the "right" medicine= healing---> recovery(--->life without ED)
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RebeccaEleanor
My daughter has now been prescribed olanzapine - tiny dose 1.25mg in the morning but it is just making her so tired.  This tiredness seems to be making her moods worse and she is more tearful during the day and more upset than she has been.   I did ask the psychiatrist at the start if she should take it in the evening as after looking at lots of the messages on her that seems to be the time that most people start taking it.  The reason given for taking it in the morning was that we would be able to see it working better if she took it in the morning.  I have emailed them to ask again about this but if I don't hear back I think I will just have to make that change.   
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Enn
We also tried olanzapine for a few weeks and took it on the evening. It did not work for my d unfortunately.
There is no harm in taking it on the evening. 
When within yourself you find the road, the right road will open.  (Dejan Stojanovic)

Food+more food+time+love+good professional help+ATDT+no exercise+ state not just weight+/- the "right" medicine= healing---> recovery(--->life without ED)
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RebeccaEleanor
thanks, I have e-mailed her team but haven't had a response.  I think I will have to change it to the evening, my daughter has just been on the phone while I am at work in tears because her snack is late. one of the neighbors has a leak somewhere and her dad has gone to have a look.  Normally that would annoy her - she likes to keep to her schedule - but she wouldn't be sobbing.   It is really making her be like an overtired toddler.
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