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clem

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Reply with quote  #1 
Hi,

Oh crumbs!

I am posting this as a new thread (it's also tacked onto my last thread, was worried it would get missed as thread is about starvation mode)

I am really worrying...

This morning D did not have a bowel movement for the 2nd day in a row, very unusual. I gave her a mild senokot (herbal stool loosener) last night before bedtime, nothing has happened.

She has gone completely off the rails, is shouting and screaming at me and throwing things around (our poor dogs are scared!). I am a little frightened and not sure what to do. Typically it's Sunday and the universe is closed! I am worried, she will not eat today! She is already refusing drink.

Anyone had this experience?

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D14, AN. 5' 8" and 45kg. Diagnosed and hospitalised in Sept 2017 for 9 days. At home since in recovery/relapse. Time for Mummy to take over, time to take the reigns and bring on the magic plate!
clem

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Reply with quote  #2 
Quote:
Originally Posted by clem
Hi,

Oh crumbs!

I am really worrying.......

This morning D did not have a bowel movement for the 2nd day in a row, very unusual. I gave her a mild senokot (herbal stool loosener) last night before bedtime, nothing has happened.

She has gone completely off the rails, is shouting and screaming at me and throwing things around (our poor dogs are scared!) and slightly damaged a door by chucking a dog bone at it! I am a little frightened and not sure what to do. Typically it's Sunday and the universe is closed! I am more worried, she will not eat today! She is already refusing drink.

Anyone had this experience?

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D14, AN. 5' 8" and 45kg. Diagnosed and hospitalised in Sept 2017 for 9 days. At home since in recovery/relapse. Time for Mummy to take over, time to take the reigns and bring on the magic plate!
clem

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Reply with quote  #3 
I am in such a pickle, I managed to quote myself without realising!
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D14, AN. 5' 8" and 45kg. Diagnosed and hospitalised in Sept 2017 for 9 days. At home since in recovery/relapse. Time for Mummy to take over, time to take the reigns and bring on the magic plate!
doris

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Reply with quote  #4 
Hi Clem, firstly congratulations on working out how to quote stuff.. I have no idea how to do that!

You are in a really scary place at the moment and your daughter even more so. Try and remember it is not your D who is shouting and screaming and throwing stuff. That is ED and the ED is cross because you are challenging it. If you and the dogs are finding it scary she will be too but she has no way to explain it to you. When my daughter gets like this I found acknowledging how she felt and gently calming her down was the only way we had a hope of getting through to her. It was usually before or during mealtimes and once she calmed down she still had to eat the meal. Getting cross or upset myself only ever made matters worse. Sometimes this process would only take a short time but in the early days when she was very undernourished it could easily take an hour or two. I always found as I started getting through to her that if I could hug her it would help her but I know not all kids will tolerate being hugged.

The bottom line is she has to eat, she has to eat 3 meals and 3 snacks a day and it is really really tough on her and you and the rest of the household. For a long time I negotiated too much with ED about what she would eat and so she lost more weight and gradually drank less and less with bowel movements down to once a week till we ended up with her being admitted to the children's ward for a fortnight for observations and feeding by nurses who gave her an ensure if she didn't eat and the threat of an NG tube if she didn't have the ensure. She hated being in hospital but it was only when she got there that she began to acknowledge she was ill. We would only let her home if she ate to our plan, no negotiation. She came home early December and has gradually got better and better such that her period started yesterday for the first time since last may. We still have the occasional bout of screaming and violence, my coffee mug was thrown against the kitchen wall this week, but she can generally be talked out of it and comforted a lot quicker. She has not been in school since October and I have barely worked... both these things cause strain but it had become very clear that the only way she was going to get better was to make it priority number 1,2 and 3. We still have a long way to go but please believe me it does get easier, but it often has to get worse before it gets better.

You are doing a great job, probably the toughest most exhausting job you will ever do. Try to find some support for you...if you can find a friend or two in the real world who gets what you are going through it will help. Use this forum, I found it really overwhelming but in hindsight I wish I had used it more.

CAHMS has helped us but they have also advised things along the way that have had a negative impact, for example limiting the length of meals and snacks..ED loved that because she could effectively just sit it out for 40 minutes and eat just a few scraps.
clem

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Reply with quote  #5 
Hi doris,

Not sure if I could do the quote thing again if I tried lol!

Thank you, ALL of your words ring so true. I have been on this since since Sept 2017, just before d14 went into hospital for a 9 day stint. I did not visit or post again on this site after the hospital visit - out of shear trauma and dread and also knowing nothing of AN. It is very overwhelming and I cry at almost every post and thread... but new type of mother instinct has kicked in!

Well done for your d having her period again! Now that is cause for celebration! Mine has not had one in around 9 months, is not at school at all this academic year and I have not been able to properly work since Sept 2017. Yes, it's a living nightmare here.

I can update that d is eating her breakfast! it did not help that I forgot the clocks went forward this morning (she has very rigid eating times, so the fact that she managed to overcome that as well, I am so proud of her)

Have not had a hug with her in months. I know it's ED and not my d, but Maaaaaaaaaaaaaaaaaaaaan, this all really sucks sour lemons! She is still shouting at me, but it's ok, she ate, I can handle the ED outbursts. I do worry about how this is damaging her though, the trauma she must be going through.

I have made d an out of hours GP appointment for later today, to see if there is anything going on with her non bowel moving tummy. We can't go on any more days with her bowels not moving!

Our CAMHS suck! I am really trying with them, but they messed up so much so far, d has lost all faith in them and course does not want to engage with them.

Sigh!

PS: Yes, I do now acknowledge that I too need support, I have isolated myself from everyone. I could also do with a massage!

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D14, AN. 5' 8" and 45kg. Diagnosed and hospitalised in Sept 2017 for 9 days. At home since in recovery/relapse. Time for Mummy to take over, time to take the reigns and bring on the magic plate!
Foodsupport_AUS

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Reply with quote  #6 
Her anxiety about her bowels not moving is just that. It is likely that her restriction is finally catching up with her and her bowel motility is slowing dramatically. The treatment is not laxatives but rather more food. My D managed to go three weeks without a bowel movement at one stage.  Yes we did use gentle laxatives for that but we were assured that when her intake improved things would work and they did. 

As much as possible it is important for you to stay calm and confident about what is happening. Your D needs to increase her intake. As her restriction increases so is the hold of her illness. When you go to the GP I would strongly suggest asking the GP to do a formal assessment for risk from her AN. You can look this up in Junior MARSIPAN - these are the UK guidelines for assessment of very ill people with AN. I would recommend printing out the assessment pages for the GP. A number of things you are saying makes me concerned that your D is critically unwell at this point. Great for getting her into the GP today. 

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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.
clem

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Reply with quote  #7 
Thank you Foodsupport_AUS,

I am just reading up on Bowel Motility and will print off the Junior MARSIPAN - where do you find this stuff! You guys are truly amazing.

I agree and cannot tell you how concerned I am as well.

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D14, AN. 5' 8" and 45kg. Diagnosed and hospitalised in Sept 2017 for 9 days. At home since in recovery/relapse. Time for Mummy to take over, time to take the reigns and bring on the magic plate!
tina72

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Reply with quote  #8 
Hi clem,
my d also had a lot of problems with constipation and it is because the body takes all he needs from the food and at the moment there is not much left to leave the body so the answer really is more food.

"She is already refusing drink."
Do not accept that in any way. Refusing to drink brought my d nearer to death than refusing to eat. In the last days before IP last year she did not drink even water any more because it "made her tummy fat". What tummy?
We had progress after 4 months adding dryed intestine bacterias (you drink it once a day with some water). The intestine system of AN patients is as damaged as with chemotherapy or antibiotics. Worth a try?

Not drinking enough is more constipation. Try to have her drink about 2 l a day. If she refuses to drink for more than 12 hours, think about driving to ER and have controlled wether she is dryed out. 24 hours without drinking is a case for ER.

"Have not had a hug with her in months. I know it's ED and not my d, but Maaaaaaaaaaaaaaaaaaaaan, this all really sucks sour lemons! She is still shouting at me, but it's ok, she ate, I can handle the ED outbursts. I do worry about how this is damaging her though, the trauma she must be going through."
It is so hard when you think you will never ever have a normal relationship to her again. But with refeeding and after WR this will get a lot better. My d today gives me all the hugs I missed last year. This time will come for you, too, I am sure. And she will not even remember what she said and did in this bad times. The patients can forget that, for the parents it is much more difficult.

"Our CAMHS suck! I am really trying with them, but they messed up so much so far, d has lost all faith in them and course does not want to engage with them."
D doesn´t really need to engage with them at the moment. If refeeding works, you do not really need them, too. If they cause more problems then help, try to change the team. Plan B and plan C. Bad help is worser than no help.

Try to do something nice for yourself and come here to have some contact if no other is available. It is important that you care for yourself.
Send you a huge hug from Germany!
Tina72





Torie

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Reply with quote  #9 
Clem, please stay with us here.  THis forum is such a powerful lifeline.

Many people do not have bowel movements every day or even every other day.  That is not something YOU need to worry about.  The fact that SHE is worried about it might offer a tiny bit of ammunition.  If she is crying and screaming about it, I would say something like, "Gosh, it really sucks to have an eating disorder, doesn't it.  I'm sure your system will get back to normal when you can eat normally again."

If she gets violent with people, I suggest you let her know this is not acceptable and you will need to call the police if she can't control herself.  If you think that will be necessary, call the police beforehand to let them know a mental health issue is involved and ask how they handle these types of things.  Some police depts are great with this, and others, well, not so much.

It's great that you seem to have decided it doesn't matter what she says - it only matters that she eats.  THat's what I think, too.

Hang in there!  We're with you in spirit. 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  #10 
Hi Clem,

You are right this absolutely sucks SOOO much, but you are doing an amazing job!

I echo what others have said, a 2 day constipation is nothing to worry about BUT you may get some leverage out of it if your daughter thinks it is. And if your CAMHS team are not helping you then just do the weighing and feeding at home yourself and meanwhile be on the look out for GOOD help while you are doing this.

Your daughter will begin to trust you more as she sees you are a calm brick wall in the face of her ED, she really wants you to face up to the beast ... and you got her to eat breakfast when she'd refused, I know you can do it.
I wonder how your appointment went?
Thinking of you. X

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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.
clem

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Reply with quote  #11 
Hi lovely people!

It's been a few days. Bowels are moving again! The GP prescribed just one packet of Macrogol to stimulate D's bowels to move, she is back to morning poo's which is a relief, I she was getting discomfort in her tummy, as well as mind.

We did go to the out of hours appt, it was a disaster! Took a while to get there, D has not been out of the house in a couple weeks and has developed agoraphobia on top of all of her other ED associated OCD like behaviors). The GP was running late and when we did see him, he just stared at her (or rather observed). That sent her doolally and she bolted for the car, grabbing my keys on the way. I had a chat with him and he was very concerned about her state of mind, more than anything and felt if we could address this first and now, we could address the AN!

What do you think to that?

He said to seek help out of our county, cos our county are not very good ED support wise etc.... hmmmm. I get this, but I need to get her weight up to a safer level.. and I feel like it's starting out again, but can't hurt.

Saying that, D has taken it upon herself over the last few day to increase her calories, albeit a few at a time every day, (was on 1000cals and is now on 1040), her weight has increased a tiny bit.... I am proud of her, but I still need to take over fully and not sure how to go about this.........

I am waiting till I see the NHS dietitian on the 9th of Apr. I have no idea what WR we should be aiming for and how much each day. I have tried to get the appt sooner, but no luck so far. Trying to wing a plan in the meantime.

We also have a CAMHS appt on the 10th of Apr at 11:00am (this is going to clash with when D eats and is going cause a MAJOR nightmare and really set her off) The last time she was there, they really handled it badly, so I will have to practically drag her in (seriously).

Should I go by myself for this first discussion session? It's a discussion about how to take WR forward, should D who will be 15 the next day, be there? My GP feels she should not have to be there.

I am glad CAMHS are stepping in (4 months late to my liking, Sept 2017 was when D was in hospital for severe restriction and diagnosis, she was put on 1400cals per day to maintain her then weight of 52.2kg, but got no further advise or plans, even though I asked, I was told an ED dietitian would be assigned to us, but it never bloody well happened).

I do feel like it's all on my shoulders, and I am blind at the moment. I will do this, I am determined, but it's not that easy, as I am sure you know. I am working my way through lots of videos and books, will see CAMHS and NHS dietitian (not CAMHS, because they don't seem to have one...I had to get one referred through GP), just not sure if D should be there at these first appointments, as she will be scared and angry.........

Thanks for all of the support and suggestions so far.


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D14, AN. 5' 8" and 45kg. Diagnosed and hospitalised in Sept 2017 for 9 days. At home since in recovery/relapse. Time for Mummy to take over, time to take the reigns and bring on the magic plate!
tina72

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Reply with quote  #12 
Quote:
Originally Posted by clem
The GP prescribed just one packet of Macrogol to stimulate D's bowels to move.


My d was running on Macrogol for 1 year and we had problems to get rid of that again. Macrogol concentrates fluids in the intestine system so she will need to drink more. Be aware that these fluids in the intestine will change the number on the scale without being "real" weight. She will not have normal bowel movement with that, it is only a short time solution.

Quote:
Originally Posted by clem
The GP was running late and when we did see him, he just stared at her (or rather observed). That sent her doolally and she bolted for the car, grabbing my keys on the way. I had a chat with him and he was very concerned about her state of mind, more than anything and felt if we could address this first and now, we could address the AN!
What do you think to that?


Try to change that GP. He does not know anything about AN. He should know that low weight is causing her behaviour and that only weight gain will normalize it.

Quote:
Originally Posted by clem
Saying that, D has taken it upon herself over the last few day to increase her calories, albeit a few at a time every day, (was on 1000cals and is now on 1040), her weight has increased a tiny bit.... I am proud of her, but I still need to take over fully and not sure how to go about this.........


Increasing from 1000 to 1040 is nothing, sorry for that. She will have to go at least 300 up every second day to come to something like 2500 to have a steady weight gain of about 500 g a week. You only lose time waiting for insight and herself doing that. She cannot do that at this state. You need to do that. YOU need to take over. Yesterday. Sorry for these open words. The little weight gain you see might be only fluid because of Macrogol. 1400 calories a day is just needed for her basal metabolism to work. With that low intake you can only stay in bed doing nothing. That is not your target.

Quote:
Originally Posted by clem
I am waiting till I see the NHS dietitian on the 9th of Apr. I have no idea what WR we should be aiming for and how much each day. I have tried to get the appt sooner, but no luck so far. Trying to wing a plan in the meantime.


You need not wait for a dietitian. You only lose time with that. WR is a question after you see a steady weight gain for some weeks. First step is to increase intake a lot. You can do that adding cream, butter and oil to everything she eats and buying only ful fat products. The dietitian can help you with that if you do not have ideas where to put what in, but she cannot help you with that confrontation you need to do.

Quote:
Originally Posted by clem
We also have a CAMHS appt on the 10th of Apr at 11:00am (this is going to clash with when D eats and is going cause a MAJOR nightmare and really set her off) The last time she was there, they really handled it badly, so I will have to practically drag her in (seriously).
Should I go by myself for this first discussion session? It's a discussion about how to take WR forward, should D who will be 15 the next day, be there? My GP feels she should not have to be there.


I would not take her with me if you want to talk about target weight and WR. No way.

Quote:
Originally Posted by clem
I do feel like it's all on my shoulders, and I am blind at the moment. I will do this, I am determined, but it's not that easy, as I am sure you know. I am working my way through lots of videos and books, will see CAMHS and NHS dietitian (not CAMHS, because they don't seem to have one...I had to get one referred through GP), just not sure if D should be there at these first appointments, as she will be scared and angry.........


You are not blind, you are just anxious to do the first step. We all were. We all feared what ED will show us when we require eating with magic plate. But you will only lose that fear if you try to do it. Close your eyes and go through that tunnel. You need to do that to see the light at the end again. It is not easy. You will need to learn a lot by try and error and you will make mistakes. We all did.
It is on your shoulders. But your shoulders can carry that. You can do that. You have fed her all her life up to now. In your heart you know what she should eat at that age. You just need to serve it and have the power to stay strict. I know that this is not easy, but I know it is possible.
Looking back I would have loved to have someone who had kicked me in my a... a bit earlier. We would not have gone through all that. It would have been easier to gain 10 pounds and not more than 20.

If she were drunk and wanted to drive your car, you would do everything to take the key out of her hands. It is a question of life threatening importance. Do not wait. Start refeeding today.

Tina72


clem

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Reply with quote  #13 
Thank you Tina72.

I am so worried that starting the magic plate will make her refuse to eat! At least now she is eating, although it's not enough..........

The out of hours GP, thankfully is not our local GP, so we wont be seeing him again. I won't take her to the CAMHS appt or dietitian, thank you for that advice.

I need some serious help her and thank you for your words, nothing will offend me.

I can do this, I can do this,I can do this,I can do this,I can do this,I can do this,I can do this,I can do this,I can do this,I can do this,I can do this,vI can do this,I can do this,I can do this,I can do this,I can do this,I can do this,I can do this,I can do this,I can do this,I can do this,I can do this,I can do this,I can do this,I can do this,I can do this,I can do this,I can do this,I can do this,I can do this,I can do this,I can do this,vI can do this,

Will make a plan and make a start!

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D14, AN. 5' 8" and 45kg. Diagnosed and hospitalised in Sept 2017 for 9 days. At home since in recovery/relapse. Time for Mummy to take over, time to take the reigns and bring on the magic plate!
scaredmom

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Reply with quote  #14 

HI clem,
I agree with tina72 110%.
The next statements are said with love, kindness and understanding of where you are right  now- really! And I too wish someone told me this, just as tina wished had been told to her. 
You do not need a dietitian. You know she needs to eat more. You know that you have to do magic plate. And you have to start now. I understand the anxiety and fear. We all had that. But it has to happen. Waiting for appointments will not help you or her- they are not in the home with you so you are the therapist. The professionals you will see, if they know anything about ED, will tell you the same thing. Please, please, please just start. Today, right now.


It is hard and it will be hard. It was hard, so hard for many of us. We are there with you in spirit and I wish I could be there in person to help you. 
"Looking back I would have loved to have someone who had kicked me in my a... a bit earlier. We would not have gone through all that. It would have been easier to gain 10 pounds and not more than 20."- Tina's words are oh so true. You don't want her sicker, I know you don't.
So here is the "kick in the pants" that we all should have had. Do it now!

As for your mantra, it is not that you CAN do it. You WILL do it! NO. MATTER. WHAT.

We are here. Go get her a meal, sit with her, be calm during the freak outs, let it just happen. Keep yourself and her safe (if needed call 911, police). 
Come back here right after and tell us how you did. I will be checking in on you. [smile]

Lots of love and support your way right now.

You go girl!

XXX

clem

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Reply with quote  #15 
Thank you so much sacaredmom!.

It starts NOW!

X

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D14, AN. 5' 8" and 45kg. Diagnosed and hospitalised in Sept 2017 for 9 days. At home since in recovery/relapse. Time for Mummy to take over, time to take the reigns and bring on the magic plate!
scaredmom

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Reply with quote  #16 
[thumb]
tina72

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Reply with quote  #17 
Try to fake that you know what you do.
Try to stay calm if it doesn´t work 100%.
Try to make her eat one spoon more than she wants to eat. Then two...like a baby.
If she smashes the plate, get another one and refill it with the same amount. Think about buying some plastic plates. Take big ones, the portion will look smaller on that.
You can do it! We all did it! You just need to trust in the process and believe in your love for her!
Come here and tell us how the first meal went. We are here.[wave]
Tina72

P.S. I just saw her high in the bottom of your post. She will need to gain AT LEAST 10-12 kg to get somewhere near WR. And then 1 kg every year until she is grown out. So no time to waste and nothing you could do wrong in the next months. No wonder she could not recover with target weight CAHMS set, 52,5 kg is way too low.
kazi67

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Reply with quote  #18 
Hey Clem
You go girl! You got this! Kick this mongrels backside! You can do it!
Great advise from all above, scaredmom so well said
I have sat back and waited for help/advise of GP’s and dieticians today sat at the hospital looking at d looking like a skeleton crying and I honestly thought she was just going to die
The hospital seemed to do.......not much a cup of OJ after 3 hours
My h ended up bringing a banana and peanut butter sandwich in after I called him and I made her eat it
Seriously you have to do it!!
They just checked her vitals and asked “are you in any pain “
🤪
tina72

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Reply with quote  #19 
Hi kazi67,
no words for that hospital team.
Who would not be in pain?
Hope you will get some more help soon. Send hubby to get another peanut butter sandwich! Great that you got her to eat that.
I am with you. Send you a huge hug from Germany. Do you feel it?
Tina72

Just learning english: what is a mongrel???
scaredmom

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Reply with quote  #20 

Hi Tina, 
I take the word mongrel to be like a wild untamed dog. [biggrin]
I hope you and your family are well, Tina,
How is your D?

XXX

tina72

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Reply with quote  #21 
Hi scaredmom,
thanks, I did not find that word in my dictionary...[wink]

Yes, we are well, thanks for asking. We have spring holiday at the moment and I baked an easter challah with my d today (with walnut filling). And I am sure she will eat a big piece of it later for coffee. She has done her final school exams (writing tests, oral are in late May) and she will finish school this year against all prognosis from "professionals" here that said she will not go back to school again. I am very proud of her. She is doing well, her mood is nearly normal most of the days (she is living a bit puberty now which is o.k. for 18 to do that now). We have still lasagne and Mc D on fear food list but everything else is done I think. Eating out with friends is still a bit a problem when she has to eat and the friends do not eat at the same time, but we will work on that.
Nothing can be compared with Easter last year when we just had brought her home from IP and needed to learn to refeed her on our own. It is so much better now and I hope you all now in the dark days will get there soon.
I hope you have a nice Easter too. I send you a big hug from Germany.
Tina72
scaredmom

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Reply with quote  #22 
Tina, you guys are doing so well
" I baked an easter challah with my d today (with walnut filling). And I am sure she will eat a big piece of it later for coffee" That will be great.
Funny I am making lasagna tonight.[smile]
I am so glad it so much better than last year. It is really hard when you are at the beginning to see the improvements.  Look how you proved the "professionals" wrong. I have seen that here over and over again. I have learned so much thanks to you and everyone here.
So happy for you all!

XXX
tina72

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Reply with quote  #23 
"Funny I am making lasagna tonight.[smile]"

Just a dream: could you image I could send my d to your house to eat that lasagna with you?

What a wonderful world this would be if we could all live in the same village.
Friends around at every door.
Help available 24/7. Just ring the bell.
We could send our kids around for meals to have fear food day.
We could drink a glas of wine in the evening.
No explaining. No prejudice. Nothing to hide.

Tina72


Sorry, clem, I hijacked your threat...[wave]
EC_Mom

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Reply with quote  #24 
Clem, great advice here. Don't wait, just feed. My 2 cents:

1. The only medical concern with refeeding on your own is 'refeeding syndrome'. You should escalate calorie intake by a few hundred calories at a time and get a doctor's input (who should not undermine you...)

2. I recommend coming up with short-term positive leverage for your d for refeeding. NOT punishments but rewards. "You can have your phone back as soon as you start eating and you can text/play on it as long as you are eating and afterward"; "Right after lunch we are going to play with the neighbor's puppy, so let's get started!"; "You wanted to go online and order those socks/earrings/books/whatever, as soon as you've eaten we will do that, so let's get started!"
Torie

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Reply with quote  #25 
Quote:
Originally Posted by clem
The GP was running late and when we did see him, he just stared at her (or rather observed). That sent her doolally and she bolted for the car, grabbing my keys on the way. I had a chat with him and he was very concerned about her state of mind, more than anything and felt if we could address this first and now, we could address the AN!

What do you think to that?


I think this is worse than no help at all.  So sad and frustrating how many here have been saddled with that (raises hand).

I think it is likely the dietitian will also be worse than no help at all, but if you go by yourself it will only be lost time and gained aggravation ... if you take your d, it could become a real obstacle.

CAMHS?  Based on what I have read here, I wouldn't count on them, either.

My money is on you, clem.  You can do this.  You WILL do this.

How did the meal go? xx

-Torie

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