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yellowcaty

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Reply with quote  #26 
Hi

Still no change. We are waiting for a bed, but don't know how long it will take or where it will be. Bloods being redone on Monday at the request of the hospital consultant. They will then decide what to do. CAMHS team are seeing her twice this week. Her mood is up and down. She keeps saying that she is anxious, but won't/ can't explain why. Sometimes she seems quite happy and relieved and then the next moment she is angry again. I think we will all function a little better when we know what will happen.

Thanks for all the advice and support.
Yellowcaty
silvermoon

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Reply with quote  #27 
Yellowcaty, I like you, read posts daily, and although I'm new to all this and don't have any advice to offer.

I wanted to post some words to say I'm thinking about you and your d and hoping that she gets the help she needs soon. It's a terrible illness! hopefully the support from this site offers you hope and let's you know your not alone. Sending hugs.
kazi67

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Reply with quote  #28 
Yellowcaty
Thinking of you and your family too, no words of advise my d didn’t go to hospital but have been down the horrible refeeding path and it is a awful journey for all of us
Hope you get the help you need very soon
x
yellowcaty

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Reply with quote  #29 
Hi

Thanks Tina 72 for checking on me. It means so much in this lonely world to have people that care.
Silvermoon and kazi67 ( and all others) thank you for your support.

Spent the day feeling really anxious. I don't know how to cope with this period of waiting. Finding it hard to motivate myself. There is no time for anything. The house is a mess and the laundry pile is unbelievable. As we are insisting that she stays with us for 2hours after eating, it takes up to at least 13.5 hours a day with eating. When they suggested 2 hours it seemed extreme, but the desire to purge is so strong that even that doesn't stop it. I feel like I have no time for the rest of the family.

Sorry for the continued moan!
Yellowcaty
tina72

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Reply with quote  #30 
Hi yellowcaty,
we simply thought at you, we know how you feel now. And I can remember that good feeling to be able to come here and vent.
We are with you in spirit! Send you so many virtual hugs...
Until your d is in hospital the rest of the family and the laundry must wait. Your d is most important now.
Can you get some help from family/friends? Do your kids have friends and you can get their parents into the boat and ask them to do something nice with them?
Can you get someone to help you with laundry? Sometimes the friends/family just doesn´t know how to help and are thankful for an idea.
Tina72
tina72

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Reply with quote  #31 
Maybe it would give you both some distraction to ask your d to help you with the laundry after a meal?
And can you phone up the hospital daily to make it urgent?

Remember: No one dies because the house is a mess or the laundry not done. You have different priorities now and that is o.k.
Life stops. For us, too. But it will continue later.
Torie

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Reply with quote  #32 
Quote:
Originally Posted by tina72
Abnormal blood tests are "normal" with Ed


Tina, when you say this it makes me wonder if they test for more things in Germany.  Elsewhere, it is very common for blood tests to be normal until sufferer is essentially in medical crisis.

YC, I agree with Kali that it would be prudent to speak with facility when your d goes in because it is common that they do not monitor carefully enough to stop the purging.  Can someone tell us specifically what she might be able to arrange to help ensure the best care?

So sorry for all the difficulty.  ED is the worst. Keep swimming. xx

-Torie

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"We are angels of hope, of healing, and of light. Darkness flees from us." -YP 
tina72

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Reply with quote  #33 
You are right, Torie, it totally depends what you are looking for. In IP they did only a simple blood test and that was quite normal (only vitamin D was so low they couldn´t messure it any more). But later we found a GP who knows something about ED and also other metabolism diseases and he took a big blood test. He said that it is common for ED to have low zinc, magnesium, iron and vitamin b1,6 and 12 and so it was with my d.

And you are right that many sufferers seem to be medically stable and o.k. until they faint or get heart problems. It is unbelievable what the body is standing...

Purging: it would be necessary to tell them that she is able to purge AFTER 2 hours because in many IP they only watch them 1 hour because they think it is not possible to purge later.
Tina72
yellowcaty

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Reply with quote  #34 
D at therapy today ( they offered it as one last attempt, but we were told it probably wouldn't work) and she said that she has nearly finished the referral. The doctor has obviously done her part, so really frustrated that the phycologist hasn't completed it. This will mean that there will be an even further delay. She also told her that they are really concerned about her health, so I can't really understand why she hasn't sent it off. We are seeing the doctor tomorrow so hopefully she can hurry it up.

Bloods have been redone so we will have to wait for the results. D's very angry with everything. Anytime food is mentioned or presented she starts having a go. It is becoming really draining. I am trying not to get drawn into arguments with ED, but then she just says I am ignoring her.

Feeling down and frustrated.
Yellowcaty
mid73

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Reply with quote  #35 
It is ridiculous that they’ve not done the referral yet. I feel angry on your behalf. Just keep serving up the food. It is draining and exhausting but try if you can to zone out from the argument with ED. It’s taken me a year to learn not to rise to EDs bait.

When you see the doctor I would clearly explain that you feel she is deteriorating and you are concerned that the longer these behaviours continue the more entrenched they will become and your daughter needs help now to get her firmly on the road to recovery.

All the very best x

tina72

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Reply with quote  #36 
Hi yellowcaty,
I know it is difficult at the moment, but try to offer her something you can do together which has nothing to do with food to give your relationship a new start.
Call that psychologist daily! Why didn´t he finish it? Tell him time is running out and wether he will take consequences for that.
Is drinking more easy than eating? Can you wake her up with a heavy smoothie in your hand and just say "drink this"?
Tina72
yellowcaty

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Reply with quote  #37 
Thanks Tina72 and mid73
It is so comforting to get support. Hopefully the doctor will push things along today. It is clear that she is deteriorating, both in mind and health. If the bloods come back abnormal again I think that will rush things along. I am going to be quite forceful today. I have my own appointment with them once they have seen us both together.

Tina72
She has a huge issue with drinks apart from Forticip (she has 3 a day). At the beginning they supported us with a meal plan. They do up this constantly and are really good about adding calories. She is now on 3000+. However, she won't deviate from this plan. She will eat anything they tell her to, so we can control it that way. Dinner is the only meal that is different each day and that she doesn't know what it will be beforehand. I know this will make it more difficult when she goes into IP, but it is what saved her at the beginning.

I will update later!!

Mamaroo

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Reply with quote  #38 
Hi Yellowcaty

I hope the referral is on its way today! My d doesn't purge, but complained a lot about feeling nauseous after eating. I gave her a glass of aloe vera juice a day until the feeling stopped. It might help your d.

Good luck and sending plenty of hugs!

__________________
D became obsessed with exercise at age 9. Started eating 'healthy' at age 9.5. Restricting couple of months later. IP for 2 weeks at age 10. Slowly refed for months on Ensures alone, followed by swap over with food at a snails pace. WR after a year at age 11 in March 2017. She is back to her old happy self and can eat anything put in front of her. Now working on intuitive eating.
yellowcaty

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Reply with quote  #39 
Hi

We are still waiting. Referral form has gone in, but we have no idea how long we will have to wait.
Her potassium levels are low. We were in A&E all day on Tuesday, but got conflicting opinions from 3 different doctors. She had 3 blood tests because they didn't take enough the first time to get any readings. She has just been for more blood tests today.
I'm not sure how we can physically go on much longer. I am sitting beside the phone in case there is any news 😢
Yellowcaty
tina72

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Reply with quote  #40 
Hi yellowcaty,
I feel with you, these days are so hard to stand. Oh how I hate that, 3 doctors and 4 opinions. When do you get the results of her blood tests? Maybe that will help a bit. Can you add potassium meanwhile? Just to make it not any worse.
Try to do a short walk on the fresh air. You can take your cellphone with you and will not miss anything. Maybe hubby or a friend can stay with your d to give you some minutes? Or try to take a bath. Anything that might relax you a little bit.
The referral has gone in and they are now surely seeking for a bed. I hope they will give you more information soon.
I cross my fingers that your phone will ring. Sending you a big pack of power and hope.
And an enormous hug.
Tina72
silvermoon

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Reply with quote  #41 
Yellowcaty, it's the worst feeling to be, just waiting for the phone to ring. Are you able to sit in the garden so you can get some fresh air, I find this helps even if it's for 5 minutes.

I also find listening to a favourite song gives me a few minutes of distraction. Thinking of you and your D, hoping for the help to come your way fast.
Silvermoon
Kali

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Reply with quote  #42 
Yellowcaty,

Thinking of you and hoping your daughter will go in soon.
This is the hardest time, right before, since everything your daughter is experiencing is likely to be at its very very worst. I remember that two week period before my daughter went in as the most nightmarish time of my life.

I found the uncertainty, fear and stress really indescribable. However, when she went in I started to feel as though she was in a safe place for the very first time since it had become apparent that she was ill. It was difficult for her to comply with what was being asked of her at first, but within a few weeks she started to complete her meals and things improved from there.

Try to see if you can do something kind for yourself once she is in that safe place. 

Sending support,

Kali



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yellowcaty

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Posts: 87
Reply with quote  #43 
Hi
Latest update
Her potassium levels are still low, so now on medication. Doctor has told her that she now needs constant supervision to try to stop the purging cycle. If her potassium levels drop anymore then she will be admitted to a paediatric ward for stabilisation.

A bed in a good hospital nearby is coming up in the next week or two. Her doctor really wants to try to get her there, because the other limited options are a long way from home.

She is so upset tonight because she says that if she can't be sick then she can't eat as much, it is too hard. Currently she eats about 3000 calories, but is being sick around 6 times a day ( she admitted this to the doctor today). Do I give her slightly less food to make it easier for her to stop the purging? It is the purging at the moment that is the main medical emergency. I know that she needs to do both, but I am scared that she will stop eating altogether and then we will be right back to the start.

Yellowcaty
tina72

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Reply with quote  #44 
Hi yellowcaty,
a bed in the next week or two sounds great. You will stand this. It is good when it is nearby and you do not have all this travelling on top.
I would not give her less. What will you achieve? She might make herself only 5 times sick when you drop calories a bit. But the next day she will say you need to drop it more and then she will only make herself 4 times sick and you know that it will not be true. You open ED a door you will regret soon.
Can you possibly TELL her you will give her slightly less food (and just put the calories in another portion)? Maybe she will purge less only BELIEVING you give her less food and that would be a real victory.
I cross all available fingers for you that you don´t have to wait longer. Please keep us updated how you are doing.
We are all thinking at you.
Tina72
yellowcaty

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Reply with quote  #45 
Hi

Tina72

Thank you for your advice. Yesterday was horrendous. It feels like we have gone right back to the beginning. I managed to supervise her all day, so there was limited sickness, but we had so many battles over food. She was still eating her lunch at 6pm. Although I really tried, there were lots of items on her food plan that she didn't eat. Everyday seems to get harder and harder. She is refusing to believe that if she is not sick she still has to eat.

Yellowcaty
tina72

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Reply with quote  #46 
Hi yellowcaty,
these days before IP were horrible, I remember that well. On the last 2 days we fought to get 1/2 ensure into her (for the hole day) and she restricted to drink water.
What you see at the moment is ED in total person.
"I managed to supervise her all day, so there was limited sickness, but we had so many battles over food."
ED is seeing you take it serious and you achieved to supervise her all day and she could make herself sick as often as ED wanted. To ED is through the roof at the moment, but honestly that is a victory for you (I know it doesn´t feel like that). The consequence for ED is that if the battle "purging" is lost, it turns to the battle "food" again.

Do you think it might help you to call Eva Musby to get some help until you wait for that bed? She does skype-sessions, maybe she has some ideas how to manage that difficult time.

"She is refusing to believe that if she is not sick she still has to eat." She is on medication for low potassium, so she is definitivly sick. If she were healthy, she would not need meds. Try not to argue about that, she doesn´t believe she is sick anyway and you know that is part of ED. You are chief, you are in charge for health, you are in charge for food. No discussion.

If you see ED, you can fight him. He is so angry at the moment and fights so much because ED knows that IP is coming at that it will be fought there.
I once told my d: "You can fight me as much as you like, but I will NEVER give up until you are healthy again and live a normal teenager life. I am much more stronger than you think and I will NOT let you die." Fake it until you make it. Try to give her the illusion that you know what you are doing and that you will not give her up. She needs you. You are her mirror. If you give up, how can she fight this damn illness?
Tina72
yellowcaty

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Posts: 87
Reply with quote  #47 
Hi
Still waiting for a final decision. We know there is a bed coming up soon, but we have had no reply yet from the central board dealing with the referral. We should have had it by now so unsure how long it will take and if we will miss the bed in the meantime.
It is really frustrating.
Yellowcaty
mid73

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Posts: 121
Reply with quote  #48 
How frustrating! can you push for a progress update. I’m not entirely sure how the referral system works. However we were lucky that as a bed was available when we needed one it literally happened overnight so I don’t understand why they can’t give you either an answer or an indication. I will keep my fingers very tightly crossed for you. Do look after your self and carry on carrying on.

Best wishes x
yellowcaty

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Posts: 87
Reply with quote  #49 
From what the doctor is saying I think that the referral will be accepted, we are just waiting for it to be confirmed. They have said that we should have only waited a week, so they will chase it tomorrow. The doctor knows that a bed will be available next week, but she doesn’t know if anyone else is on the waiting list. Hopefully we should find out soon as she is restricting food again and still being sick.
Foodsupport_AUS

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Reply with quote  #50 
I can only scream in frustration at the inadequacy of the service you are being forced to deal with. You started this thread a 16 days ago, and are still waiting to even find out that she is definitely on the list, let alone any indication of when she may be admitted for her life threatening condition? Can you move higher in the chain for a complaint? Member of parliament?
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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.
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