LisafromAustralia
Registered: May 31, 2008
Posts: 167
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| | June 10, 2008 at 07:58 PM | Reply with quote | #1 |
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D came home from hospital yesterday and it all started again. She refused to have her afternoon tea. Spent 45 mins yelling screaming and saying the most horrible things, particularly about my deceased mother. Tea time she had fish and vegies (I know fish is not high in cals but she hasn't had any for 3 weeks because she was on the allergy menu in hospital). She refused to drink her milk and cordial. Supper was not much better, however d did drink milk, bad mummy gave in and she had skim milk, with topping, not full fat (it's hard to get someone to drink milk who has never been a milk drinker). Breakfast today 200mls up'n'go and a pear. I tried without yelling to get her to have more, but no luck. I am so tired and it has only been one day.
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LauraCollinsUS
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Registered: July 31, 2007
Posts: 4,036
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| | June 10, 2008 at 08:13 PM | Reply with quote | #2 |
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It is hard. Confounding, counter intuitive, bizarre even.
Here's the thing, though, the eating disorder is taking advantage of your compassion. The anger, the resistance, the appeals for mercy - these are not your daughter. It is the ED that is using your daughter to its purposes: and succeeding. And what works for him, he does even more.
I missed my daughter terribly when she was ill. I had to put aside my own loneliness and desire to talk with and be understood by my daughter because she was GONE and would stay gone until she was saved from the ED.
Once I planted my feet and understood that my feelings didn't matter, that my daughter needed me to be strong and not listen to her words - only her needs - I was able to be brave enough to do what had to be done.
She needs you to stand up to ED in a calm and unyielding way.
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arts
Registered: Feb 19, 2008
Posts: 112
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| | June 10, 2008 at 09:24 PM | Reply with quote | #3 |
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HI Lisa
My heart goes out to you. ED is such a difficult thing to deal with. However, Laura is absolutely right in everything she has said.
The thing that helped me the most in standing firm to the mission at hand - which was to get my d well, was separating the ed from my daughter. It took time with, psyching myself up that this is the ed and not my d, talking to her ed was a strange thing but this is normal for me now and helps alot. She has not separated the ed from herself and most probably never will but this single step helped me immensely and is still helping me now. Do not back down. You know what full nutrition is. Give this to your d with love. There will be much yelling and chaotic behaviour but keep firm in your message. We have gone full circle 3 times! I wish i knew what to do the first time.
Just an aside, d is home today from school because she did not have her shake yesterday! Sounds silly but we have to put boundaries to keep them safe and stick with them when the time comes.
Sending you strength and hugs. Arts
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Stubbornmum
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Registered: June 06, 2008
Posts: 624
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| | June 11, 2008 at 01:22 AM | Reply with quote | #4 |
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Hi Lisa and Arts, your posts are really hitting the spot with our family right now, I can understand the tiredness, have you support from other family members?? Dont be hard on yourself, you are a GOOD mummy its just so hard to push food it feels so unnatural!! Stick perhaps to one battle a day, ie make tomorrow full cream milk day, I had to do the same with an apple, she now eats a whole apple! Mornings are the hardest for us, but dont cave in because youll only have to face it later, recovery is about full food choices not ED led choices.Its not rational or fighting fair, you have to stonewall the ED, dont move from the table until its done. I have told her if it cant be done at home, it will be done by the nurses, I have no choice and neither does she, NOT eating is NOT an option. Boy I know its tough, feel free to vent I would be glad to give and receive support, it helps to know youre not alone.
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Mari
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Registered: July 31, 2007
Posts: 289
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| | June 11, 2008 at 05:24 AM | Reply with quote | #5 |
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Sometimes the initial resistance is extreme. I told hardly anybody about the stuff we went through at the table. No one would have believed it if I got the words out anyway. However, beating that initial resistance is what you need to do. I think a few people mentioned The Exorcist. I even rented the movie, even though it scared the heck out of me when I was younger. I tried to channel that priest--stay calm, don't waver no matter what it throws at you.
Stay strong and don't back down. I know this is hard to do but keep thinking about recovery as your light at the end of the tunnel. If ED sees any chance of getting its way, it will take advantage again and again. Whatever behavior is successful, you will see more of. If it knows it can throw dishes and not have to eat dinner, you'll see broken plates for sure. One family wrote that they put several plates of the same meal in front of their daughter. Four of them landed on the floor. She ate the fifth one. That's the key.
The good news is, once you break through the initial resistance the battles will get easier. Not to say that the demon won't rage now and again.
Lisa, I know you have it in you to beat this thing. Go kick Ed's ass!
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arts
Registered: Feb 19, 2008
Posts: 112
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| | June 11, 2008 at 09:36 PM | Reply with quote | #6 |
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Yesterday I told you that I kept d home for not having a shake. Having a shake for her is so major that she took several tabs of diazepam without our knowledge in hope that she would pop herself!!! She says that she does not want this life any more. It is too hard for her and she makes it too hard for us.
I am not angry with her but I am very very sad. This has made me step up vigilence big time and she knows it. I spent all day turning her ed comments and questions around in an attempt to enlighten her to the fact that she should maybe ask her ed or start challenging the negative thoughts with the facts at hand.
Funnily, i feel that she is coming good but the resistance in her head is too strong for her. This is so HARD. So hard for all of us. |
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arts
Registered: Feb 19, 2008
Posts: 112
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| | June 11, 2008 at 09:38 PM | Reply with quote | #7 |
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| Sorry Lisa, I do not mean to hijack your thread but i just wanted to vent. sigh! |
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lydia
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Registered: Aug 04, 2007
Posts: 2,769
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| | June 11, 2008 at 10:31 PM | Reply with quote | #8 |
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" I spent all day turning her ed comments and questions around in an attempt to enlighten her to the fact that she should maybe ask her ed or start challenging the negative thoughts with the facts at hand."
arts,
It will help if you can let go of the feeling that you can "reason" with your d right now.
She's really unable to help her illogical and self-destructive thinking. Patients can't help lashing out at caregivers, that's why it's so important to get support from others who understand this, and can help you see this through.
"She says that she does not want this life any more. It is too hard for her and she makes it too hard for us."
This is a very important statement, and you must take it seriously. Patients feel terrible despair, they want to hold onto the illusion of "comfort" the disease offers, and the idea of resisting ed completely overwhelms them. Stepping up the vigilance is important, but I would also bring your d's statements and diazepam abuse to the attention of her doctor right away.
Sending hope and hugs.
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Linda
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Registered: Oct 03, 2007
Posts: 328
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| | June 11, 2008 at 10:46 PM | Reply with quote | #9 |
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Dear Arts I'm sending masses of good wishes.
I agree with Lydia. My d was in the same position as yours- suicide attempts etc and didn't want that life anymore. in hind site she says my reasoning made it worse because her head just continued arguing with everything i said or tried to turn around. She felt no matter what I said her ED had a reply for. This scared her.
She felt things were more manageable for her when I just confidently said I know life is unfair and awful at the moment BUT you WILL get better and we will battle this together. She was also on 24 hr watch at this time.
Your confidence love and support will get her through- unfortunately reasoning may make ED argue harder.
My d was also reassured when I said I was confident because her feelings were quite usual for someone as sick as she is (not unique at all) and I KNOW that continued eating will make the difference. No reasoning just a statement.
I'll be thinking of you guys.
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arts
Registered: Feb 19, 2008
Posts: 112
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| | June 12, 2008 at 12:03 AM | Reply with quote | #10 |
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Thanks guys for your responses. You are so helpful.
I will take it all on board. It makes sense. Yesterday i could see the struggle d had in her head with the ed.
As Linda points out:
'reasoning made it worse because her head just continued arguing with everything i said or tried to turn around. She felt no matter what I said her ED had a reply for. This scared her.'
This is exactly what i saw in my d's body language.
YOu know, I don't mind her lashing out at me, as I see this a symptom of her ill health but from now i will be mindful of what i say to her. She is in such a fragile place and i love her dearly, even this she shakes her head to and cannot accept. ED is so cruel :-( |
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arts
Registered: Feb 19, 2008
Posts: 112
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| | June 12, 2008 at 12:06 AM | Reply with quote | #11 |
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| Oh by the way, her dr was informed as soon as we worked out what happened. He just called me today too see how d was going. |
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LisafromAustralia
Registered: May 31, 2008
Posts: 167
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| | June 12, 2008 at 02:38 AM | Reply with quote | #12 |
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An update. Although still struggling to getting d to eat everything on meal plan, she is eating most of what I give her, although still skim milk but with topping, and she did have some margarine on her toast /bread, not a lot but some and she is eating f/fat cheese. She has had scare though. A girl who was in hospital first time round has been re-admitted, severely affect, medically. It was sad to hear because she had been out of hospital for some time (about 2 months). D wanted to go to school tomorrow because she is bored, but boo hoo, school is out for the day. We will make a start next week and see how things go.
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Stubbornmum
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Registered: June 06, 2008
Posts: 624
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| | June 12, 2008 at 05:17 AM | Reply with quote | #13 |
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Lisa, that is great news, small steps I know but steps forward and thats great!!. Persistance , love and stubbornness on your part will show your d the way to go. Believe me deep down they do know we love them and they really need our help to move out of the fog they're in. Please take note of my mistake, calmness will win over frustration and despair. I pushed too hard the other day and it made things tense, calmness will speed progress and build trust. Believe me I know its hard but count to ten or one hundred before you react to being pushed to your limit. Each day three meals, snacks etc, its a little like feeding a fussy toddler. At this point my d has gained and the difference in temperment and communication is marked.It really does appear that weight gain brings back their personality, Hang in there skim milk and all, maybe you could move to low fat soon, or pop in melted choc instead of topping (anything to boost calories). Keep going I look forward to hearing your progress again.
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BridgetAUS
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Registered: July 31, 2007
Posts: 1,067
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| | June 12, 2008 at 08:49 PM | Reply with quote | #14 |
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Hi Lisa - as hard as this is you are making headway. Keep pushing to make all those meals and snacks count towards weight gain and good nutrition - and thereby towards recovery. The first glass of full cream milk I served I got straight back in the face - it was tough one for my daughter as well! Many here recommend the 'magic plate' approach which I think now is the quickest and kindest route to recovery. For various reasons we refed with a more structured and repetitive diet (but still high in oils, proteins, carbs and calories) - it took longer but we did get there in the end.
take care
Bridget
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CarolinG
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Registered: Sept 05, 2007
Posts: 259
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| | June 13, 2008 at 06:24 AM | Reply with quote | #15 |
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Hi Lisa,
it's a tough battle and I feel for you. Hopefully your MM team will be fully supportive of your efforts. I am guessing you're working out of Sydney or Brisbane? The initial stages of recovery are hard work but clear boundaries, unwavering determination will pay dividends.
We worked with compromise to begin with, as we weaned our d off a NG tube. Weight gain was our primary concern followed by variety. We insisted on no "diet foods" and as weight increased we were able to add new "feared"foods to the menu. Gauge the moment to switch to "full cream milk" and have 20 litres to back your belief.
Be wary of ED behavior and irrationality and vigilant on 24/7 care. Sending you hope and encouragement.
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CarolinG
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Registered: Sept 05, 2007
Posts: 259
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| | June 13, 2008 at 07:34 AM | Reply with quote | #16 |
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As parents we have to question whether our responses help to maintain an eating disorder. I hope the team in Melbourne are fully supportive of your efforts.
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Zeri
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Registered: Feb 19, 2008
Posts: 1,480
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| | June 13, 2008 at 06:27 PM | Reply with quote | #17 |
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Lisa, Be firm & resolute....no school, no anything until she cleans the plate & drains the cup. You can do it!
Refeeding is very hard, but the alternative is unthinkable.
"Keep going!"
Arts, I hope your d is physically well today. Bless your heart. It's a battle. You're doing a good job....it's so exhausting. I hope you get time for a warm soak in the tub this evening.
Zeri
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LisafromAustralia
Registered: May 31, 2008
Posts: 167
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| | June 17, 2008 at 05:24 AM | Reply with quote | #18 |
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Boo hoo, d lost 1.5kg. Close to going back into hospital. We had therapy session today and she was so angry. Would not eat the tea we offered, eventually eating a toasted cheese Vegemite sandwich, milk (skim with topping, she did try full fat but just couldn't drink it) and an apple. I will offer her supplement for supper see how it goes. As with all of us battling along, I am exhausted.
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Stubbornmum
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Registered: June 06, 2008
Posts: 624
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| | June 17, 2008 at 08:25 AM | Reply with quote | #19 |
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Lisa, I am so sorry to hear that you are struggling so hard, your d is in the grip of the ED that is strong, you have to be stronger!
R u doing this solo? Can others help, siblings family, it really helps to share the load.
I've made mistakes with my approach to insisting on the eating, is it time for you to change your tactics? We stopped threatening punishments, started just sitting patiently, and trying to distract her with good thoughts, talk about the things she could be doing instead of hospital, what are her hobbies, interests?
She really is in a fog and needs direction out, ED will attack those who are trying hard to eradicate it, I,m sorry but you will be in the firing line.There is hope if you realise that any weight gain really will start to bring back their old personality.
Load up the calories, I put coconut milk in her rice, boiled up in this rather than water, HEAPS of fat!! Insist on shakes,I loaded mine with weight gain powder from GNC, 400 cals per drink.It was and still can be a struggle but I dont leave the table until its finished. Tastes better than sustagen, sweeter.
Get the weight on fast and you will see her improve, its really suprising.
Lisa it is tough and I really feel for you, get rest and help, your d loves you she just cant do this alone, its not in her power to change the thoughts until she gets weight on. She really needs a strong presence to take over the feeding task,
I know it feels like your d, but she is lost when it comes to food, irrational , scared, and alone. My d describes it as a fog, sometimes she cant hear us, and the voice is telling her NOT to reach for the food, its too dangerous to eat.
Image that for a moment, its like someone trying to persuade you to swim with sharks. Image that fear and that is what she feels. She needs help to overcome this irrational fear, reassurance that she can do it, she is a hero, she is wonderful, and you will protect her. Practising overcoming those fears will help your d recover,I know this is an essay but I really hope and pray that your d will recover soon and you can get your d back she deserves the best and so do you!!!!
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CarolinG
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Registered: Sept 05, 2007
Posts: 259
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| | June 17, 2008 at 08:59 AM | Reply with quote | #20 |
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Lisa,
If your d goes back into hospital use the time to recharge. It is exhausting work and you have to be 100%. Meals are not negotiable so instead of 'offering' insist that this is what needs to happen. 'Offering' implies 'choice'.
You are doing good work. Tighten up the slack areas where the ED is able to slip through. If she has lost 1.5kg it may mean upping the calories, restricting activity, more supervision, 24/7 care.
Stay strong.
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dh
Registered: Jan 17, 2008
Posts: 139
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| | June 17, 2008 at 09:47 AM | Reply with quote | #21 |
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I have been where you are and know how horrible it is to see this resistance, anger, anxiety. You need to take charge and stop negotiating or coaxing her to eat. Tell her firmly, but kindly that nothing else happens until she eats(and I mean nothing), draw the line in the sand and don't budge even if she melts down over and over again. If you stand firm the ED will eventually give in. If it knows you cave in, it wins and your d loses and she will not get better.
We saw extreme anger, violence, spitting, throwing, wailing, etc. It was agonizing to watch and tested me to the core, but I knew I had to do it.
If your daughter is hospitalized again, she will come home again so why not insist on full nutrition now! She need high fat/high calorie food (don't have skim milk available in your house). The thread at the top of the message board is great with ideas.
She needs you to stand up to the ED, she can't.
I don't want this to sound harsh, I know it is hellish to face this. I followed the advise of the parents on this board beginning in January and my d is a almost weight restored and almost back to her old self. I wouldn't have believed it was possible 6 months ago. You can do it too!!
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LisafromAustralia
Registered: May 31, 2008
Posts: 167
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| | June 18, 2008 at 05:16 AM | Reply with quote | #22 |
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Going bad to worse. The day started well, eating full breakfast, morning t and fairly good lunch, but an argument this afternoon, over supplements, she lost it, She finally had afternoon t but sat at the dinner table playing with her t. It had all things she liked would normally eat even with the ed, but she just refused. We finally got her to drink 350mls of up 'n' go which is equal to a supplement. DH I have high cholesterol, hence the need to have skim milk in the house.
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LauraCollinsUS
Moderator
Registered: July 31, 2007
Posts: 4,036
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| | June 18, 2008 at 06:15 AM | Reply with quote | #23 |
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Lisa,
Don't lose heart! Every meal is a step closer to restoring her reason and independence. Every day is not only a day gained but also a day you didn't go backwards.
She will resist, that's her job. You will perservere, that's yours!
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arts
Registered: Feb 19, 2008
Posts: 112
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| | June 18, 2008 at 11:27 AM | Reply with quote | #24 |
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HI Lisa, hang in there. You are doing well. Keep up with the feeding this is important no matter how hard it is for your d and yourselves. Take it simply as one step at a time. You have to be strong for your d and you will be. Maybe you can think of giving d alternatives to milk that have good calorific value.
Thinking of you. Arts |
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Zeri
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Registered: Feb 19, 2008
Posts: 1,480
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| | June 18, 2008 at 11:30 AM | Reply with quote | #25 |
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Lisa, don't "offer"...you must 'require'. Skim milk for you & h; whole milk w/heavy whipping cream added for d.
As Laura says, the only way out of the disease is thru it...with FULL nutrition...3 meals/snacks a day, every day.
If you can't be resolute at home you must admit her where full nutrition can be administered. While she's in patient, rest & get ready for her return home so that you can "keep going".
"No eat, no anything else". Get on it.
Sending hope & virtual gonads your way.
Zeri
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LauraCollinsUS
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Registered: July 31, 2007
Posts: 4,036
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| | June 18, 2008 at 11:33 AM | Reply with quote | #26 |
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Zeri, I don't think one day goes by that I'm not tickled by your word choices. Virtual gonads, indeed! |
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dh
Registered: Jan 17, 2008
Posts: 139
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| | June 18, 2008 at 08:26 PM | Reply with quote | #27 |
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Hi Lisa,
I hope you have a better day today with your refeeding (I think it's morning for you now in Australia). You are obviously a loving and caring mom. Don't lose heart, there is hope as you perservere. Thinking of you.
DH
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LisafromAustralia
Registered: May 31, 2008
Posts: 167
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| | June 19, 2008 at 05:13 AM | Reply with quote | #28 |
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Yes had a better day today. She ate quite well. Moved from skim to low fat milk which she decided tasted worse that full fat milk! We will keep plugging away. I served the tea she didn't eat last night and she ate all of it. She is now watching tv. We also went to her school to see the teacher that has been helping with school work etc in readiness for her return for next term. I am also arranging for visiting teacher to come around to help her get on track with school work (not that she really behind in anything, the subject she hasn't really managed to keep up with is science and that's the teacher's fault for not supplying the work while she was in hospital). We also got an exemption from all exams. Her half year marks will be based on completed work she has submitted from hospital. So that is 1 less stress for her.
Tell you one thing, we might have problems, but you should see the trouble one kid is in. He arrived at school (same time we did) in a police divisional van (any Aussies will know what I mean) and he was escorted in by the cops. He was given a right royal ticking off by the office lady and then shown to vice principals office. Must get the gossip of what he did because he gave the school "black eye''!
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Stubbornmum
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Registered: June 06, 2008
Posts: 624
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| | June 19, 2008 at 06:24 AM | Reply with quote | #29 |
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Lisa, well done for hanging in there, each meal completed is a step closer to full health. I read that you have high cholesterol and obviously have food choices, but your d really should be having high energy foods to push her recovery.
Try not to mention your food needs in front of your d as this will fuel ED. Insist she eats what is required to regain her health, and downplay your own requirements, chances are she is totally confused about food as ED is irrational at the best of times!!!
I know that we shouldn't "sneak" things into their diet, but to save stress we dont allow our d in the kitchen when we prepare food, and she doesn't know we gave her 1/2 and 1/2 low fat and full cream milk.
My d has gained 1 kg a week since we put refeeding together as a family.
She did and still does resist at times, one afternoon was intense with chairs flying around the kitchen,head banging, but I stayed for 2 hours until I was scared she would hurt herself and I started to drag her to the car thinking she needed hospital care.
This was the day I insisted she eat 4 tiny teddy biscuits. She threw them down her throat as I threatened to call an ambulance. Since that day she scared herself ( as well as me) and she doesnt want to do that again. We both take things a little more calmly BUT I NEVER let her leave the meal uneaten. EVERYTHING is to be finished.
ED now knows I mean business, she even said to me "all this for 4 tiny biscuits?". I replied " ED will never wear me down, I love you and I wont let ED hurt you."As my d has gained (4 kg now) her smile is returning her spirit is stronger.
Please Lisa dont let ED stay in your house, put the weight on and watch ED weaken .Since the tiny teddy incident she has progressed to TV snacks and choc chip muesli bar for afternoon tea.
Winning each battle not allowing ED a chance to win allows your d to see the way out of the fog.
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CarolinG
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Registered: Sept 05, 2007
Posts: 259
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| | June 19, 2008 at 07:07 AM | Reply with quote | #30 |
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Stubbornmum well done on your d progress.
LisafromAustralia good to see you still have an interest in affairs around you, even if it is gossip. Moments like that are important to give you a reality check. When my d was in hospital I marveled at what some parents/families were going through. Sophi DeLezzio (think that's how you spell it), the 4y.o. multiple burns victim from a car accident in Sydney was admitted to hospital whilst our d was there. Along with all the other 'cases' it was a reality check for us. I remember thinking "we've got it easy!".
Distraction during meals is another great way to get the calories in. It takes the focus and anxiety off eating. Some days will be better than others. Keep plugging away. Nothing is more important than your d nutrition and health as well as your families well being.
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Zeri
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Registered: Feb 19, 2008
Posts: 1,480
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| | June 19, 2008 at 01:24 PM | Reply with quote | #31 |
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"I know that we shouldn't "sneak" things into their diet, but to save stress we dont allow our d in the kitchen when we prepare food, and she doesn't know we gave her 1/2 and 1/2 low fat and full cream milk."
I don't consider it sneaky, tricky, or wrong in any way to feed a starving child what they need in order to recover. It is unneccessary, and I consider it merciful not to worry a recovering ed person with the breakdown of the contents of their 'medicine'. "You are sick, and I/we are going to help you get well"...I think that is a sufficient explanation.
I think that therapists, doctors and other professionals who encourage/insist that those ill with eds be given control or a 'voice' regarding their nutrition are getting the cart before the horse; restore physical health first (Stage/Phase I) and then address 'individuation'. Those afflicted w/ed can't successfully individuate & separate from us (parents) if they are not phsyically healthy enough to do so. Does that make sense?
Stubborn, you are a loving, compassionate mom and so intuitively wise to spare your d any unnecessary trauma.
Let's all "keep going"!
Zeri
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LisafromAustralia
Registered: May 31, 2008
Posts: 167
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| | June 26, 2008 at 05:41 AM | Reply with quote | #32 |
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D lost a very small amount of weight 100g. We are disappointed but you know who isn't but she knows that if she loses even the smallest amount next week, it's hospital again. Dr said he was not too concerned this time because she is eating better this time around. After clinic went to hospital cafe were D had 300mls of strawberry flavoured milk (in Australia called Big M) and an orange for afternoon t. She didn't like the "fat" content of the milk but she drank it anyway. T was left-over casserole (always taste better second time round!), slice of bread and glass of milk with topping.
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BridgetAUS
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Registered: July 31, 2007
Posts: 1,067
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| | June 26, 2008 at 06:50 AM | Reply with quote | #33 |
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Hi Lisa - I remember at our first weigh-in after we started Maudsley - we saw a small weight loss too. I think this is not uncommon. It takes a while to figure out just how much you need for weight gain. It was very disappointing but it also hardened our resolve to turn things around. I remember thinking that I didn't want us to be going through all this and not be moving forward. We added a Sustagen to each meal. They were great - available in the supermarket and a good calorie hit with lots of vitamins and minerals as well. We poured them into a glass so our d didn't dwell on the contents labels.
take care
Bridget
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Zeri
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Registered: Feb 19, 2008
Posts: 1,480
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| | June 26, 2008 at 10:41 AM | Reply with quote | #34 |
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You need a LOT for weight gain. Why be concerned about just enough? Your aim should be in the 3,500 - 4,500 calorie range....daily. Whole milk supplemented w/HWC...lots of oil, butter, pasta w/rich creamy sauces, etc. A peanut butter sandwich w/the milk would be 4-5 times the calories of a large orange. You have to be very, very resolute. Disregard your d's resistance & comments altogether.
You can do it Lisa.
Zeri
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LisafromAustralia
Registered: May 31, 2008
Posts: 167
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| | June 26, 2008 at 10:36 PM | Reply with quote | #35 |
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Zeri, D is allergic to peanuts (we exclude all nuts) and eggs, so peanut butter sandwich is out of the question. Even if she wasn't allergic to these items, we can't have peanut butter in the house because I am also allergic to peanuts. While d was in hospital she re-acted to bread (supposed to be gluten free because she was on allergy diet, pardon the pun) and it turned out the bread had egg in it. Not only do I have read labels for fat content, I have to read for her allergens. Anyway we will keep plugging away and saying some prayers too.
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Stubbornmum
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Registered: June 06, 2008
Posts: 624
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| | June 27, 2008 at 01:03 AM | Reply with quote | #36 |
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Lisa, is must be incredibly difficult to have all these dietary requirements ON TOP of ED. Do the dieticians have any suggestions?? I have seen recipies for flourless chocolate brownies etc, If you like I could post it here for you.My d has gained 7 kg since we restarted feeding, and I put it down to a weight gain powder from GNC.It may be suitable for you, 400-500 cals per shake. She has 2 a day on top of meals and this is what is gaining for her. Each kg gained is 7000 cals so aim for 1000 cals extra per day., for my d that equates to 3000 cal diet per day.She is gaining her personality back as well as her confidence with others, sometimes its still hard to know whats ED whats hormones,whats teenager, whats fatigue etc etc.but I can see glimpses of my d again. Our Maudsley team asks us to try to remember what she used to eat regularily before ED, so we've reintroduced TimTams etc. What did your d like to eat before ED? It certainly looks like you've slowed the loss down and she will eat at the cafe, we have still to try eating out so we will attempt this during school hols.Keep up the good fight, every day out of hospital is a good day.
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CarolinG
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Registered: Sept 05, 2007
Posts: 259
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| | June 27, 2008 at 03:40 AM | Reply with quote | #37 |
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Lisa your doing really well.
Don't take your d weight loss too hard. It just means stepping up the pace until the gains exceed the losses. Small milestones like eating and drinking in public places are also huge.
Well done. |
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Zeri
Mentor
Registered: Feb 19, 2008
Posts: 1,480
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| | June 27, 2008 at 03:49 PM | Reply with quote | #38 |
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Lisa, flgirl's d also has a lot of allergies. She's just recently been able to get her d's daily cals in the 3,000 range (she's been able to use heavy whipping cream), & she's going to Duke this weekend. Maybe you 2 can 'talk' about menus, etc.
I'm sorry your re-feeding is complicated w/food allergies; that makes it even more challenging. But don't give up. As Laura says the way out is thru.
"Keep going"!
Z
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kmtmb
Registered: May 13, 2008
Posts: 53
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| | June 28, 2008 at 08:41 AM | Reply with quote | #39 |
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I can relate as well. My daughter is rather hard to feed as well. Dairy and most meat irritates her stomach, even moreso now because of her being malnourished. And since she was a vegan for some years, she isn't even used to digesting meat or dairy. In addition to that experience, her older brother has ulcerative colitis (similar to Crohn's disease, but it affects a different region of the colon). So you can imagine, we have had to do a lot of snooping around the health food store for some time. He isn't supposed to have anything dairy as it upsets his stomach. Both my kids drink soymilk and such but I have been insistant upon my daughter eating fish and yogurt and having shakes. I'm also working on getting her to eat poultry and cheese and eggs. Baby steps I suppose.
Anyways, you can replace eggs in muffin, cake, and brownie recipes with olive oil and applesauce, or mashed banana. One egg is equal to one third cup vegetable oil, four ounces of applesauce, or one mashed banana. You can also use regular cola in cakes or brownies instead, but I like to use mashed fruit because its more nutritious. Soda does give a nice fluffy consistency though. Sometimes, I replace one egg with applesauce/banana and one with soda.
Since your daughter can't have peanuts, try avocados! You can make a great tuna salad by mixing the canned tuna with mashed avocado. Spread plain avocado on a bagel or bread, topped with tomato slices, kale, and pepper. Put it in salads with fruit and a nice dressing. If you have trouble finding breads that don't have any of her allergens in them, making your own is actually pretty simple. If you go to your local health food store, you can find all sorts of exotic flours to make a nice hearty loaf. My son makes his own bread with spelt, quinoa, and ammaranth. He throws in good stuff like flax and sesame to make it more nutritious and calorie laden. Its funny, both of my kids have to eat like horses. I'm grateful that at least one of them is more than willing to do so though.
You might also want to try investigating other nuts that she isnt allergic to. Almonds are wonderful. I make a fantastic broccoli salad with almonds and yogurt dressing. Depending on what kind of yogurt you use, one half cup of it has about 200-400 calories.
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Malia
Mentor
Registered: July 31, 2007
Posts: 1,044
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| | June 28, 2008 at 12:44 PM | Reply with quote | #40 |
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Hey kmtmb--
When you have a few minutes, would you mind popping over to the high calorie suggestions thread? It's sticky at the top of the forum. You can copy your above post to there, and anything else you can speak to in terms of working around allergies during refeeding will help more families than you might realize. Most of our readers never post, and these allergies aren't uncommon.
Also--you mention your daughter having a hard time digesting dairy and meat--have you tried Solgar's digestive enzymes from the health food store? My health food store carries several different digestive-help products, but these are by far the most complete that they offer. For my d., who was evidently lactose intolerant from age five or so, these made a huge difference. (We introduced them during re-feeding and were able to use milk products with abandon.) She took them for several months during refeeding, but goes without them now unless she has a big, heavy, meal and they're handy.
You may have tried this route already--
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kmtmb
Registered: May 13, 2008
Posts: 53
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| | June 28, 2008 at 02:41 PM | Reply with quote | #41 |
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Your request has been granted dear Malia. I posted my broccoli salad in the recipe section. Hopefully it will be enjoyed.
Thank you for the tip about digestive enzymes. Do they aid digestion in general, or are they specifically for lactose-intolerance? I'm asking because my daughter isn't really lactose-intolerant. Its more of a problem with her overall digestive system I think. Hopefully as her health is restored, this will right itself.
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Malia
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Registered: July 31, 2007
Posts: 1,044
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| | June 28, 2008 at 03:58 PM | Reply with quote | #42 |
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In general. As a bonus they also seemed to help our d. with what looked like lactose intolerance for much of her school-age years, but now seems to have resolved. |
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LisafromAustralia
Registered: May 31, 2008
Posts: 167
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| | July 08, 2008 at 03:20 AM | Reply with quote | #43 |
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Yippee. D gained this week. Although not sticking to meal plan to perfection she has done really well (1kg) which what Drs wanted. We have seen Ed make a view comments, snide remarks etc but I just divert conversation or ignore. All this means is that d can go back to school next week part time for 2 weeks then full time thereafter (all being well).
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LauraCollinsUS
Moderator
Registered: July 31, 2007
Posts: 4,036
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| | July 08, 2008 at 06:42 AM | Reply with quote | #44 |
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Lisa,
That is FANTASTIC. Like turning around a very long ship, once you are going in the right direction it gets a lot easier! Keep going!
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Stubbornmum
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Registered: June 06, 2008
Posts: 624
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| | July 08, 2008 at 08:14 AM | Reply with quote | #45 |
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Yahoo that is great, keep it up and you will see great changes with your d , we have, I cant believe how things have changed already. There have been many tears and who knows maybe a few more to come but I now know we can take charge of this ED and with our d 's being young we have a few years to assist their recovery. Lisa you are a hero and so is your d .
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lydia
Moderator
Registered: Aug 04, 2007
Posts: 2,769
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| | July 08, 2008 at 09:16 AM | Reply with quote | #46 |
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" All this means is that d can go back to school next week part time for 2 weeks then full time thereafter (all being well)."
Lisa,
It's wonderful to hear that you're making real headway against your d's ed. I know this has been a struggle, you have done a phenomenal job!
I would just suggest a bit of caution about your d's plan to go back to school. To sustain the gains you've been making, it's very important to maintain a regular schedule of eating and to keep your d's calories moving consistently throughout the day.
That means she'll either need a schedule that allows her to be at home with you for all meals and snacks, or someone knowledgeable at school to oversee her eating there--making sure she eats the required calories, on time, and ensuring against any possibility of purging afterward.
Ed looks for any chinks in the armor. And time away from home is often when ed finds ways to regain control. We have to assume this whenever we're anticipating our children returning to school, going to camps, or returning to work. For our d, the time she took off from school made a real difference in her recovery.
Sending hope and strength
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Zeri
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Registered: Feb 19, 2008
Posts: 1,480
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| | July 08, 2008 at 11:03 AM | Reply with quote | #47 |
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I'm glad that the tide is turning for you, but I would echo Lydia. Your d is only 15, yes?
"Keep going!"
Z
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dh
Registered: Jan 17, 2008
Posts: 139
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| | July 08, 2008 at 09:01 PM | Reply with quote | #48 |
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Awesome news! Your perseverance is paying off. |
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LisafromAustralia
Registered: May 31, 2008
Posts: 167
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| | July 17, 2008 at 07:48 PM | Reply with quote | #49 |
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Boo hoo. D hadn't put on weight "legally". She cheated and got caught this week when it showed she had lost weight, yet her food/moving around had not changed. She confessed to Dr yesterday, and was extremely upset. This may or may not be a turning point as she is deeply ashamed of what she did. We haven't talked to her about it yet (on Dr's advice) and will only discuss it if she says anything. I should note she hasn't lost weight either with her weight being the same as 2 weeks ago, which isn't what we want but better than losing. She has gone back to school (mornings only) this week and she is being kept busy with small amounts of homework. At least while her mind is occupied with school work ED is pushed aside for the moment.
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lydia
Moderator
Registered: Aug 04, 2007
Posts: 2,769
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| | July 17, 2008 at 10:18 PM | Reply with quote | #50 |
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"She cheated and got caught this week when it showed she had lost weight yet her food/moving around had not changed..."
I should note she hasn't lost weight either with her weight being the same as 2 weeks ago,"
LisafA,
How did your d "cheat"? I'm a bit befuddled by your post...
I'm asking because often patients can start to loose, even if they're keeping the calories up and limiting activity. Starvation causes metabolism to slow down (to conserve energy) and it sometimes takes a while for it to switch on again. When BMR begins to increase again, it's necessary to increase caloric intake. One of the many reasons why weekly weighing is so important.
"This may or may not be a turning point as she is deeply ashamed of what she did."
This is so heartbreaking isn't it, to see our children suffer this way.
I'm sorry about this setback, we're all here for you. |
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