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toothfairy

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Reply with quote  #26 
How long has she been ill?
Has she list much weight?
What is her current bmi or weight/height?
Has she had a proper medical evaluation?

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Son,DX with AN, (purging type) in 2015 ,had 4 months immediate inpatient,then FBT at home since. He is now in strong recovery, (Phase 3 ) and Living life to the full, like a "normal"[biggrin] teen. This is with thanks to ATDT. Hoping to get him into full recovery and remission one day at a time. Getting him to a much higher weight, and with a much higher calorie plan than his clinicians gave him as a target, was instrumental to getting him to the strong recovery that he is in now. Food is the medicine.
frazzledmum

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Reply with quote  #27 
She's lost approx 12kg in 2 1/2 months (which I think is why they said they would hospitalise her), though she put on 200g last week. She's had full blood tests twice, and is now 44.2kg at 162cm height. We've had several evaluations and are under Chelsea and Westminster ED service and we are getting proper treatment/care. 
I am cautious with how far to go with things as when we did magic plate a few weeks ago, she ended up in A&E as she took an overdose, (I got a letter from social services afterwards and manged to get rid of them) and don't want it happening again. She certainly eats better after negotiation and making small changes each week as discussed with the Dr. 
toothfairy

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Reply with quote  #28 
Od dear, that shows how strong her ED has a hold on her.
I would push for hospital with all I had....she will turn 18 next birthday which can be a game changer....be warned...I know I sound like a broken record!

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Son,DX with AN, (purging type) in 2015 ,had 4 months immediate inpatient,then FBT at home since. He is now in strong recovery, (Phase 3 ) and Living life to the full, like a "normal"[biggrin] teen. This is with thanks to ATDT. Hoping to get him into full recovery and remission one day at a time. Getting him to a much higher weight, and with a much higher calorie plan than his clinicians gave him as a target, was instrumental to getting him to the strong recovery that he is in now. Food is the medicine.
mjkz

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Reply with quote  #29 
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He should have an idea of how awful this is, as his sister was anorexic, back in the late 70s, the only help they got was an understanding GP not used to dealing with ED.


Yes but back in the 70s they told parents not to be the food police and that their loved one had to want to get better for it to happen. We now know different.  He may be trying to treat your daughter with old information.

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I am cautious with how far to go with things as when we did magic plate a few weeks ago, she ended up in A&E as she took an overdose,


Having had a daughter who did the same thing, it was terrifying.  I still did Magic Plate and LSUYE.  I made sure that someone was with her at all times and locked up any meds, sharps, etc.  Following my daughter's rules (because her OD scared me too much to do anything else) kept her sick for a long time.  I hope you are able to get a hospital bed but if not, you have to change the rules to keep her alive.  In the long run not eating will kill her too.
Torie

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Reply with quote  #30 
Quote:
Originally Posted by frazzledmum
He should have an idea of how awful this is, as his sister was anorexic, back in the late 70s, the only help they got was an understanding GP not used to dealing with ED.


Ironically, I think that can make it harder.  When what they have seen is an ineffective, outdated treatment model, that can make it harder for them to get onboard with current thinking.

Is he willing to watch some of the videos toothfairy posts?  

Thinking of you. xx

-Torie

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frazzledmum

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Reply with quote  #31 
Thank you all for the replies, I hadn't thought about the old treatment methods having such an effect on H. Maybe he also feels powerless as he has tried to 'fix' D and sees his efforts having little effect on her, then gives up. He's not into watching the videos or reading the books but has done some searching on the internet.

She is complaining she is fat now so am distracting her with every boring and dull thing I can. She does seem to be responding to the Dr making small changes every week and seems to be willing to do what they say, despite pretending to ignore them.

Just getting worn out now and other D goes back to Uni at the weekend which will be hard for us as she has been a great support over the summer. And my dad has terminal lung cancer, 200 miles away.


EC_Mom

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Reply with quote  #32 
Just another voice to say that bribing and distracting are your friend right now. Let's call it "incentivizing" rather than bribing: "Once you've started eating, then you can use your phone with your other hand"; "after dessert is done with we can go shopping for that new perfume [not clothes!!]"; "X is coming over today but I've said that unless you are well enough for a visit it won't work, so let's quickly finish up so that X can come!"
frazzledmum

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Reply with quote  #33 
Yes, I suppose it's whatever will work, the end will justify the means! It's really hard to go back to bribery and corruption, I used it loads when the kids were small, but in a way she's small again....
toothfairy

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Reply with quote  #34 
Hi there, 
Would it help to print this out for both of you to read. Again, this illness is deadly serious and needs to be treated as such.....

Would it help to re-frame for your H, your D has a potentially deadly illness,  it has the same mortality rate as childhood cancer , would he look at videos or read books if the diagnosis was cancer. 

https://www.nationaleatingdisorders.org/sites/default/files/Toolkits/ParentToolkit.pdf

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Son,DX with AN, (purging type) in 2015 ,had 4 months immediate inpatient,then FBT at home since. He is now in strong recovery, (Phase 3 ) and Living life to the full, like a "normal"[biggrin] teen. This is with thanks to ATDT. Hoping to get him into full recovery and remission one day at a time. Getting him to a much higher weight, and with a much higher calorie plan than his clinicians gave him as a target, was instrumental to getting him to the strong recovery that he is in now. Food is the medicine.
frazzledmum

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Reply with quote  #35 
Hi toothfairy,
I'll print it out and leave it where he'll find it! To be honest he would be the same if D had cancer as now, head in the sand at first, then charge at it like a rhino, if that doesn't work, stick head back in sand and try to blame me.

We went for our appt today and I told the Dr that H needs to help with making sure D eats and not just complain about what she does/doesn't eat. He agreed. We'll see what happens with H this week.... 
toothfairy

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Reply with quote  #36 
Great,
Best of luck.

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Son,DX with AN, (purging type) in 2015 ,had 4 months immediate inpatient,then FBT at home since. He is now in strong recovery, (Phase 3 ) and Living life to the full, like a "normal"[biggrin] teen. This is with thanks to ATDT. Hoping to get him into full recovery and remission one day at a time. Getting him to a much higher weight, and with a much higher calorie plan than his clinicians gave him as a target, was instrumental to getting him to the strong recovery that he is in now. Food is the medicine.
HateEDwithApassion

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Reply with quote  #37 
As one who also has had a H who hasn't quite gotten it and vacillates between disengaging and then engaging with anger to "fix" it, I understand how stressful that can be. I'm sorry you aren't getting the support and back up you need.

The parent to parent video was something I shared with my H and he did watch it. I think your H might get a lot out of that video and it's short and easy to take in vs. reading articles or websites. I would ask him to watch.

As for bribery, if it works, do it. For many of us, and particularly those of us with young adults, we have no such leverage. If you have leverage still and it gets food in her body, go for it. The sicker they get, the less they care about life, the less hope they have for the future, and the less you have to incent with. I wish I had something my D really wanted to do so much that she would stick with her meal plan to get it. I'm glad you do!



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17 yo D. Diagnosed in July 2013. W/R in Sept. 2013 and has remained so. Roller coaster on and off since, mainly with ED under control but co-morbid depression and other negative coping mechanisms making our life hell. Trusting in God for daily strength and wisdom.
frazzledmum

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Reply with quote  #38 
Yes, vacillating between engaging to fix this quickly and disengaging is exactly it, relieved I'm not the only one! But very stressful as I feel I am fighting a battle on 2 fronts and there is only one of me.

There are likely to be interesting developments this week as D's older sister has just gone back to university and that is when D usually gets much clingier to me. However at the moment I am the devil incarnate, so we'll have to see if her need to cling to me is greater than the demon that is AN.......
mjkz

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Reply with quote  #39 
Yes, you do want to jump on this and get it taken care of as quickly as possible.  Dragging out weight gain does nothing but prolong suffering.

Also your hubby doesn't need to get it to help you just as our kids don't need to have insight in order to get better. I found with my own ex-husband that he never really got it but could follow my directions or suggestions of what would be helpful.  Lack of insight simply means he needs more suggestions from you on how he can best be helpful or stay out of the way.
frazzledmum

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Reply with quote  #40 
So, last week D didn't lose any more weight which was a huge relief. H still not on board but, not really sure what else I can do about that, other than say he should stop complaining about what she is eating and come up with something she will eat.

We have been told she should start drinking milk, which she hasn't done since she was a toddler and even making it into hot chocolate didn't really work, she thinks she is lactose intolerant as she said she felt sick after drinking yesterday's milk and as if there was a lead weight in her stomach. I am not sure if I believe this or not. Should I continue  with the milk? I have said she could swap it for a piece of cheese. Other types of milk have not gone down well in the past, we have tried various ones.

Also, what have other people done about school, D is 17 and in her last year of A levels and is at school but I know that her health needs to come first. What are the long term consequences of staying at school/ keeping her at home (Dr is against this as it impairs their social development)/ not doing well in her exams etc? She is a high achiever, but has dropped one of her subjects and is not applying to university, so is feeling undermined by other people doing more subjects than her and filling in application forms etc. Any advice/ experience gratefully received.

Finally, looking on the website there is lots of talk of a recipe book, but I can't find it, does anyone know anything about it?
Foodsupport_AUS

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Reply with quote  #41 
Great that you have slowed the loss, it is hard, but I know you know that this week she needs to be eating more. 

Caloric beverages, in particular full cream milk is great because it has a variety of vitamins as well as protein and fats. This is why it is often recommended. It is hard to say if she is lactose intolerant but remember it is common for there to be stomach discomfort with refeeding, the malnutrition of eating disorders affects the gut and so it is common for there to be discomfort irrespective of food. It is one reason why the more calorie dense the food the better. If historically she has not drunk milk then using cheese or yoghurt can be a good alternative. 

You wonder about school. The most important thing at the moment is that she is eating. When at school is she having supervised meals? If not she may need to be missing school, looking at part time etc. Many here have had to remove their child from school, my D missed more than 18 months. 

This is a link to the recipe book -- https://www.bookemon.com/book-profile/family-recipes/320399

It is always worth looking at these threads too: http://www.aroundthedinnertable.org/post/high-calorie-suggestions-696425?highlight=high+calorie&pid=1299960201#gsc.tab=0 or http://www.aroundthedinnertable.org/post/high-calorie-snacks-5794369?highlight=high+calorie&pid=1295467176#gsc.tab=0


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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.
Kali

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Reply with quote  #42 
Hi Frazzledmom,

Excellent news that your daughter didn't lose any weight last week. 
Here is a link to the high-calorie meal thread which has lots of good recipes:

https://www.aroundthedinnertable.org/post/high-calorie-suggestions-696425

and a thread with some online resources for recipes:

https://www.aroundthedinnertable.org/post/online-refeedingrecipe-resources-8521051#gsc.tab=0

Is this the recipe book that you are looking for:

https://www.bookemon.com/read-book/320399

As far as milk and cheese go, I'm lactose intolerant and the condition is very easily managed. (If she is truly lactose intolerant) Can you give your daughter 2 lactaid pills 5 minutes or so before drinking the milk? You are in the UK right? I don't know if they are called something else there but I can tell you that they work. They supply some of the lactase enzyme needed to digest the milk products. Vanilla Almond Milk or Vanilla Soy Milk also taste good and cause no reactions and do contain some fat and calcium. 

https://www.lactaid.com/products/lactaid-dietary-supplements/lactaid-fast-act-caplets?&utm_source=google&utm_medium=cpc&utm_campaign=Branded+-+Supplements&utm_content=Supplements&utm_term=lactaid+pills&gclid=CICSm-K-3tYCFa6wswod6-YLKA&gclsrc=ds

If she is truly lactose intolerant, the best cheese I have found is called manchego and it is a Spanish cheese made with sheep's milk. It tastes really good, has calcium, fat and protein, and causes no discomfort at all even without the pills. 

There is an actual test that the dr. can give her to find out whether she is truly lactose intolerant and either confirm a diagnosis of that and give you dietary guidelines to manage it or you can find out whether this is just something the eating disorder is saying. Maybe you could look into that? Lactose intolerance does not present as a lead weight in your stomach but anorexia can. Lactose intolerance presents first as a very uncomfortable stomach ache and then (apologies if this is TMI) abdominal pain and the runs later on. But the team is right that she does need milk and dairy products for her bone growth. If she is not drinking enough milk she will need a good multivitamin with calcium.

As far as school goes that would depend on how she is managing...if she is eating enough...how are lunches at school being handled...is she able to start gaining....what the team thinks... My d. took a year off between high school and university to work on her health. She was iller than we realized her last year at high school and that was when the eating disorder really started to kick into high gear but did manage to get through it.

Kali

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Torie

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Reply with quote  #43 
Quote:
Originally Posted by Kali
As far as milk and cheese go, I'm lactose intolerant and the condition is very easily managed. (If she is truly lactose intolerant) Can you give your daughter 2 lactaid pills 5 minutes or so before drinking the milk? You are in the UK right? I don't know if they are called something else there but I can tell you that they work. They supply some of the lactase enzyme needed to digest the milk products. 


Kali is right.  If your d doesn't want to take the tablets (AN sufferers are often irrational about that kind of thing as they fear ANY intake including vitamins etc.), you can buy lactase drops that you can add directly to the milk itself, either with or without her knowledge.

I also agree with Kali about the symptoms of lactose intolerance. 

For some reason, milk was really tough for my d when she was in the throes of AN, which made us all the more determined to make sure she drank plenty of it.  I hate this vile illness.  xx

-Torie

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Kali

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Reply with quote  #44 
Hi Torie

Thanks for the info about the lactase drops, I didn't know that they existed. I'll try them at some point and see how they work!

Kali


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frazzledmum

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Reply with quote  #45 
Thank you for the replies, I am torn between wondering if she is lactose intolerant or whether it ED related. She ate cheese before ED but never really liked it, though it didn't upset her stomach and she has always eaten yogurt with no problems which makes me think it is not lactose related. She doesn't complain about stomach ache with any other food though. Will look into the drops, they sound a good idea.

As for school, she is already doing part time, as she is in her last year, the students are given more freedom and don't need to attend if they have no classes, which is good. Her eating is supervised as much as possible as she eats with a teacher, which she hates but complies with. My main concern is her stress levels as it was the stress of exams in June which triggered this awful situation.
Kali

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Reply with quote  #46 
Hi Frazzledmum,

You are probably right that if she had been eating yoghurt and cheese with no issues then it is not lactose intolerance. 

Are there some things which you can help her with regarding stress: guided meditation, restorative yoga (Highly recommended! There is no movement, you are just lying in different poses and focusing on relaxing) or mindfulness exercises?

best,

Kali

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deenl

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Reply with quote  #47 
Hi frazzledmum,

My husband can't have lactose so we buy full fat lactose free milk from any major supermarket. Cream has no lactose. I doctor the milk in our fridge by drinking 200ml from each litre and replacing it with cream. My son hadn't had milk in so long that he no longer knew what it tasted like and never noticed.

In your shoes, I would be inclined to buy lactose free milk and tell her but add cream without her knowledge. If she says anything about the difference in taste just put it down to the different brand.

There is no doubt that my son felt psychosomatic pain which felt and was real to him. I would just say matter of factly 'Aw, you poor think. Your system is just getting used to x again. Will I get you a hot water bottle?' Answer was usually a scowl or worse but he knew he still had to eat.

I don't know if it would be different for girls but my son was home for two whole school years. He's back full time since September and doing super. No social issues other than what was there before. He did rejoin his old classmates as his school does all work on computers and each person works at their own level anyway.

Warm wishes

D

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2015 12yo son restricting but no body image issues, no fat phobia; lost weight IP! Oct 2015 home, stable but no progress. Medical hosp to kick start recovery Feb 2016. Slowly and cautiously gaining weight at home and seeing signs of our real kid.

May 2017 Hovering around WR. Mood great, mostly. Building up hour by hour at school after 18 months at home. Summer 2017 Happy, first trip away in years, tons of variety in food, stepping back into social life. Sept 2017, back to school full time for the first time in 2 years. Happy and relaxed, just usual non ED hassles. 

  • Swedish proverb: Love me when I least deserve it because that's when I need it most.
  • We are what we repeatedly do. Excellence Recovery, then, is not an act but a habit. Aristotle.
  • If the plan doesn't work, change the plan but never the goal. (but don't give up on the plan too soon, maybe it just needs a tweak or a bit more time and determination [wink] )
  • We cannot control the wind but we can direct the sail.
Torie

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Reply with quote  #48 
Hmmm ... my understanding is that cream does have lactose, but somewhat less than milk.  Here's a chart:

http://www.stevecarper.com/li/list_of_lactose_percentages.htm

Regular milk + lactase drops = lactose-free milk.  So I would go with whatever is cheaper - lactose free milk or regular milk + the drops.  (Lactase is the enzyme that breaks down lactose.)  xx

-Torie




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toothfairy

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Reply with quote  #49 

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Son,DX with AN, (purging type) in 2015 ,had 4 months immediate inpatient,then FBT at home since. He is now in strong recovery, (Phase 3 ) and Living life to the full, like a "normal"[biggrin] teen. This is with thanks to ATDT. Hoping to get him into full recovery and remission one day at a time. Getting him to a much higher weight, and with a much higher calorie plan than his clinicians gave him as a target, was instrumental to getting him to the strong recovery that he is in now. Food is the medicine.
pettelly

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Reply with quote  #50 
My D is lactose intolerant. Symptoms are like Kali described: lots of wind (everyone in the family knows if she's had lactose!), bloating, cramps and pain and the runs but usually a couple of hours or later after eating. She can't manage milk, yoghurt, soft cheeses but is OK with butter, some cream and hard cheese. 
We buy lactose free dairy products. Because they tend to be lower-fat (as choice limited here), I usually add cream if possible. I also buy soy cream/yoghurts/desserts and soy or nut or rice milks and use them in smoothies.
The dietician recommended not giving her the lactose pills regularly, she thought better to give her lactose free products. 
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