F.E.A.S.T's Around The Dinner Table forum

Welcome to F.E.A.S.T's Around The Dinner Table forum. This is a free service provided for parents of those suffering from eating disorders. It is moderated by kind, experienced, parent caregivers trained to guide you in how to use the forum and how to find resources to help you support your family member. This forum is for parents of patients with all eating disorder diagnoses, all ages, around the world.

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Zita

We live in Austria and my 14 year old daughter was diagnosed with anorexia more than 5 months ago. Since then, she is in a clinic that specializes in anorexia in adolescents and is fed with a tube. She has been receiving Zyprexa since being admitted to the clinic, which does not really help her. After 2 months in the clinic, she got an antidepressant and started massively injuring her lip after that and that continues today. The antidepressant has now been discontinued because it did not improve her mood at all. She is a very calm and sensitive child, who absorbs a great deal from the other patients around her. Her interest in everything has decreased in the clinic more and more and we can’t even motivate her to exits or home visits. In the past she was very motivated and did many things. Above all, dancing was her passion. We are quite helpless because we believe that many of her symptoms are side effects of the medication (including Zyprexa) and her stay in the hospital and would like to ask if anyone has had similar experience and if there is any experience with nutrition through tube at home?

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Kali

Hi Zita,

Welcome to ATDT, the club that nobody wants to join as they say here.
I'm sorry your daughter is ill and understand how difficult it is. I want to point you in the direction of some resources that you can take a look at. 

First, if you have not already and would like to, please visit the FEAST site for more information about eating disorders and their treatment.

https://www.feast-ed.org/default.aspx

Here are some books you may find helpful:

When your teen has an eating disorder by Dr. Lauren Mulheim
https://www.amazon.com/When-Your-Teen-Eating-Disorder/dp/1684030439

Anorexia and other eating disorders, how to help your child eat well and be well by Eva Musby

https://www.amazon.com/gp/product/0993059805/ref=as_li_ss_tl?ie=UTF8&linkCode=sl1&tag=evamus-20&linkId=164dc0b4b51cdfd744bd372018daf2b5

Her website is also helpful. She is the parent of a daughter who suffered from Anorexia.

https://anorexiafamily.com/

And finally, I am curious about the plans for your daughter. Of course the first priority is to restore her to her pre diagnosis weight adjusted for any additional gains she should be making since she is still, at 14, growing. Does the hospital have a plan to help reintroduce food again and get her off of the tube? Has she been gaining weight while on the tube feed and how much more will she need to gain in order to be weight restored? When my d. was in treatment and being refed, they tried for a kilo gain every week. Have you discussed with them what the plans might be for her eventual return home and what support she and your family would have at that point?

and finally, here is a link to a thread in German, started by Tina72, who is german, if you want to take a look and see if anything there might be helpful.

https://www.aroundthedinnertable.org/post/informationen-%C3%BCber-fbt-und-maudsley-therapie-auf-deutsch-9514879?highlight=deutsche&pid=1306018121#gsc.tab=0

warmly,

Kali




 

Food=Love
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scaredmom

Hi Zita, 
I welcome you too to the club! I am glad you are here. I do hope that you will find the support you need. I agree with Kali about the plans for her treatment and followup.

There are some children who have had NG tubes at home. Sotired, also I think Mamaroo. Please use the search button for "NG" and there are quite a few. 
Also this thread is recent with some discussions on the NG too.
https://www.aroundthedinnertable.org/post/accountable-eating-9905262?pid=1306123436#gsc.tab=0

Here is one such discussion and there are a few.

https://www.aroundthedinnertable.org/post/ng-feeding-and-nasal-bridle-9869410?highlight=ng&pid=1305831013#gsc.tab=0
https://www.aroundthedinnertable.org/post/can-you-use-ng-tubes-at-home-9692570?highlight=ng&pid=130366526

Please ask all the questions you have. There is always someone around.
XXX









Food+more food+time+love+good professional help+ATDT+no exercise+ state not just weight+/- the "right" medicine= healing---> recovery(--->life without ED)
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Foodsupport_AUS
Welcome Zita. The others have given you a few ideas already. 
There has been a few parents in Europe who have taken their children out of inpatient hospitals for re-feeding at home. The circumstances can be very varied, as can the illness, so there is no one path that works for all. Please ask lots of questions.
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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Nicstar4
Hello and welcome Zita, I think ask the doctors, tell them your concerns.
I think hospital can be hard. When they are out of their home environment the way that they have coped, and managed and the way she is used to to family coping is very different to all the other patients experiences.
I think that this may make them more depressed, and also realize the gravity of the situation.
Also, they way that you support her is not happening at hospital, so she is probably going into herself a bit more.
Plus is she is gaining weight she may be feeling worse.
This may be as well as possible side effects of medication, which sound like they have impacted the situation.
My daughter went in to hospital a few days ago, and her mood has dropped. She has pointed out that most of the other people there are intense and depressed. I partly think that she is used to our big family and black humour to keep her buoyant. Also, she is hating having more calories and the prospect of gaining weight and realized she is missing out on life and how her situation is a problem is also getting her down.
I hope you manage to get some mood improved soon and get answers to your questions.
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deenl
Hi Zita and welcome,

There is a member in Switzerland and their story seems very similar to yours. Their name is tdm13 and here is a link to the topics they posted. It may help you to read their journey.

Please be aware that restriction itself causes an incredible amount of symptoms. After all the basic functions of the brain are electrochemical reactions and the necessary 'chemicals' are derived from food. During WWII there was a study called The Minnesota Semi Starvation Study that took men who were physically and psychologically healthy and restricted their diet by 25%. The symptoms they developed were so similar to those my son developed that I was amazed. You can read about the study here and here.

Should you decide that you do wish to take your daughter out of hospital, you should be aware of how difficult it is to get her to eat. It is very possible, as we can attest to here but it is not at all easy. There are a number of books that are very helpful but these are my favourites:


When Your Teen has an Eating Disorder by Lauren Muhlheim. This is a very clear straight talking guide for parents. I am well through the traumatic refeeding but I have still found lots of ideas to keep us in recovery. It is really great for giving you the framework and detail you need fast but lacks some of detail that Eva's book has.

Here is the link to Eva Musy's website. Eva is a mom who has been through the AN journey with her daughter. Her book 'Anorexia and other eating disorders' is great with absolutely loads of information. When I was screaming out for the answer to BUT HOW this was the book that helped me.

Another book I loved is Carrie Arnold's Decoding Anorexia. Carrie is a science journalist and had Anorexia for over a decade. This book combines the biology of the illness (in a way us non-scientists can follow) with her own story of recovery. Fascinating read that helps you understand all the strange symptoms of the illness.

The website I found most useful was the Kartini Clinic blog.

This is an online educational tool that has lots of info too.

In my mind, the most important tool parents have is information. I found it impossible to help my son and was at the mercy of ineffective professional care until I had gained enough knowledge and found this website. Then I was able to navigate the health care system and take the support I needed (medical supervision of heart and bloods- essential) and reject the areas I found unhelpful (therapy prior to weight restoration). And with the help of this forum I found confidence and courage. I got my parenting mojo back.

Wishing you courage and strength,

D



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, food variety, begin socialising. Sept 2017, back to school FT first time in 2 years. [thumb] 2018 growing so fast hard to keep pace with weight
  • 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.
  • We cannot control the wind but we can direct the sail.
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tina72
Zita wrote:

We live in Austria and my 14 year old daughter was diagnosed with anorexia more than 5 months ago. Since then, she is in a clinic that specializes in anorexia in adolescents and is fed with a tube. She has been receiving Zyprexa since being admitted to the clinic, which does not really help her. After 2 months in the clinic, she got an antidepressant and started massively injuring her lip after that and that continues today. The antidepressant has now been discontinued because it did not improve her mood at all. She is a very calm and sensitive child, who absorbs a great deal from the other patients around her. Her interest in everything has decreased in the clinic more and more and we can’t even motivate her to exits or home visits. In the past she was very motivated and did many things. Above all, dancing was her passion. We are quite helpless because we believe that many of her symptoms are side effects of the medication (including Zyprexa) and her stay in the hospital and would like to ask if anyone has had similar experience and if there is any experience with nutrition through tube at home?



Hi Zita,
a very warm welcome from Germany!
If german is your first language and you would prefer to write to someone in German in addition to ATDT you are welcome to send me a private mail. Just click on my nickname and a window will open where you can write an email to me.
I will also bump some information in German about Anorexia and FBT for you.
Eva Musby has also a lot of information in German on her website.

First questions:
Is she gaining in IP? Is she already weight restorated (she normally should be after 5 months IP unless she was very badly malnurished and underweight)? Is she eating anything besides the tube feeding? Are you engaged in therapy or is it the same "excluding parents" therapy as in Germany? Do you have a say with her refeeding?

Anitdepressants often do not work at all while they are underweight.

My d also got worse in therapy here and we took her out to do FBT at home after 4 months. I would not suggest that for other families but here we had no other option and looking back it was the right decision. But you would need to plan that well and have help with refeeding at home. And she must be in a medically safe and stabil state. And no suicide attempts.

Tina72
Keep feeding. There is light at the end of the tunnel.
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deenl
Here is a great link from tdm13 reflecting on their journey and how they feel about the traditional hospital treatment and family led treatment. I wonder if they would be open to you contacting them directly. You could try sending them an email and asking.

If you are on the computer you can email them by clicking on their name and then clicking on their email address.

If on the phone, click on the box with the three lines on the top left and then on desktop version, follow the instructions for the computer above. To get back to the mobile version go to the bottom of the page and click mobile version!

Warm wishes,

D
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, food variety, begin socialising. Sept 2017, back to school FT first time in 2 years. [thumb] 2018 growing so fast hard to keep pace with weight
  • 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.
  • We cannot control the wind but we can direct the sail.
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tdm13
Dear Zita, warm feelings from Switzerland,

As mentioned by deenl we faced a pretty similar situation: d was in hospital for 4months, fed only with NG & state of mind really as you described.

The hospital was not capable to get her to eat and therefore to remove the NG and therefore to let her go home: catch 22 situation...

During this time we got familiar with FBT, leart a lot (I recommend Eva Musby pragmatic book & support), and decided to remove her from inpatient and refeed her ourselve with the support of another outpatient team that would take care of her, even if (worst case) she would not eat at home neither.

It was the best decision of our life: she resumed eating right away, maintaind a healthy weight and her state of mind completely cleared up with time.

It was however one year of difficult struggles againt ED with lots of support from us the parents: at least one parent full time for a couple months, then it eased with time,... but this is not normal parenting, you need to be prepared for it (you have so many resources for that on this site)
 
Zyprexa was introduced after the hospital and it for sure made her very sleepy at night and maybe helped about her ruminations... not too sure of the benefits, but it did not seem to harm. 

more details in interviews here and here

feel free to contact us privately if you want more details.


hope it is helpful and our hearts are with you!



tdm13
___________________________.
parents of d who started to restrict food at 11yrs in Aug2015, diagnosed as AN. Hospital resident mid-Dec to mid-Apr2016 under traditional treatment (isolation+weight contract). Total failure made us  switched successfully to FBT at home. WR in Aug 2016. No more symptoms since Jan 2018, follwoing growth & bmi percentile
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Zita
Thank you all,

You did encourage us and gave us new hope.

After 2 months staying in hospital our daughter started with self-injury (she bites on her underlip seriously). Since then this is happening. And the hospital personal is not capeable of helping her, neither trought medication, nor throught psychotherapy.
After having read so moch on the topic of FBT, we believe that her depressions are caused by the malenutrition and her tension to self-injury is caused by hospitalism. It does not help the situation at all that she is sourrounded by other girls that have simmilar problems of anorexia, depression, suicidal thoughts.
The doctors are focusing to treat her depression and self-injury, therefor they don't bother her with starting to eat again currently. She has a tube for artificial nutrition.
Our Question:
Does anybody has experience with self-injury behavior, that added later to the sympthomes additional to annorexia?
Any thoughts on what to do.

Our daughter is 14 year old and 1.64m tall and has 44.8 kg of weight. That is the desired weight of the hospital personal.
Do you think this weight is sufficent to let her body and mind recover?

On Monday we have an important meeting with the head of the clinic and the doctors in charge for her case.
Thank you in advance. It gives us strength to know we are not alone with this.
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Ronson
Hi - I think that weight is too low - I’m sure others will have exact figures but my d is slightly shorter and younger and she is now over 6kg heavier than that and starting her recovery. She has always been slight but the minimum weight for her to be considered healthy by professionals was 49kg
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Kali
Dear Zita,

I wanted to reply to your question about self harm. Unfortunately that can be one of the constellation of symptoms which come with the eating disorder. There have been many parents on ATDT who have had to deal with self harm and it is one of the most heartbreaking symptoms of the disorder. My d. also had a long struggle with it and bears the scars to remind us all of that. If you do a search for self harm or self injury you will be able to read about what other parents have said and tried in that situation.

As some of the others have mentioned, your d. will need to gain more weight. My d. is a somewhat similar height, (actually very slightly shorter) and of a slender bone structure and her weight needs to be much higher than where your daughter is right now.

As you are having a meeting with her team on Monday it might be good to ask a few questions of them:

What are their plans for getting her to take food orally and how to achieve that? Will you and your h. able to come to the unit and try to encourage her to eat? 

What are their plans for her weight restoration? Do you have any documentation of a growth chart for her showing what her growth curve would be (adjusted for age and height) if she had not become ill? That would be the weight she ought to be restored to and perhaps you could share that with her team. 

How is she managing to harm her lip and are there any steps which can be taken to prevent that? 

Quote:
The doctors are focusing to treat her depression and self-injury, therefor they don't bother her with starting to eat again currently.



There is always a possibility that the depression could be caused by her low weight since that affects the serotonin in the brain and that when her weight is brought up that will help. When our d. was inpatient they weight restored her FIRST then after she had been weight restored for awhile they evaluated her depression and did recommend an SSRI. But some families have experienced that the depression will clear when the patient is fully nourished and weight restored for some time.  At the treatment center my d. was in, the goal was to restore her to a BMI of 20.5 and then have her maintain that for 6 weeks while still in treatment because they had found through their carefully compiled research that this range gave the patient a better possibility for eventual remission, rather than the lower weights some units endorse. (They follow former patients for 10 years and get in touch with them once a year to ask a range of questions in order to compile data about the effectiveness of their treatment) They were very focused on the importance of weight restoration and brought her weight up from roughly the weight your daughter is at right now to the BMI of 20.5, IN 6 WEEKS. When she had a self harm incident while on the unit she was put under what they called constant observation for a week, which meant that she had to be watched 24/7 by a nurse—even while she slept—in order to interrupt any self harm. In order to get off the CO she had to meet with the head psychiatrist and work out a number of options to distract herself from the self injury and really work on putting them in place, with the support of the staff, when she had urges. If your d. is self harming is there someone who can stay with her to help interrupt the behavior (you, your husband, a nurse, etc)? My d's self harm urges tapered off with weight restoration, the SSRI, and doing DBT and CBT therapies later on and getting reinvolved in her life.


Anyway just trying to throw out some ideas for you.
Hoping for the best for your daughter.
Try to do something nice for yourself if you can since this is such a difficult time for a parent.

warmly,

Kali
Food=Love
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toothfairy
Hi there
Her BMI is only aprox 16.6,
She will probably need to get to a higher weight to see recovery.
Please see this video

Food is the medicine. Recovery is possible.
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scaredmom
Hi Zita, 
I would tend to agree with everyone above. This weight is too low. Do you have historical weights and height ie percentiles for where she was before ED? Ie Was she 80% for weight in the past? If you do have those weights from before I would suggest that would be the lowest target I would aim for. 
My D's first weight goal was 40th percentile for her age, she is now at the 60+ percentile and now has hit her stride. I have not decreased calories and she seems to be maintaining at that curve.
Please look up "state vs weight" There is a great video on that here. Someone may post it here for you too. 

I learned here, that the weights were too low. So when they told us she had hit the first WR ie 40%,I just kept pushing her up and it is working. 

As for the tube, are they trying to get her to eat orally too? That is something they or you need to push. The self-injury can be part of the anorexia and it tells me that she needs to gain a lot more than where she is. 

I wish you the best.
XXX

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

I must have crossed paths with tootfairy about the state vs weight video.
Perfect timing, toothfairy! thank you!!

I really find that video helpful to explain what we are talking about.

XXX

Food+more food+time+love+good professional help+ATDT+no exercise+ state not just weight+/- the "right" medicine= healing---> recovery(--->life without ED)
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Ocras68
“Our daughter is 14 year old and 1.64m tall and has 44.8 kg of weight. That is the desired weight of the hospital personal.
Do you think this weight is sufficent to let her body and mind recover?”

Zita, I would agree with the others that this weight is definitely not enough. My 14 year old daughter is only 1.58m tall and is 49.7kg after months of refeeding at home, and the clinic here (CAMHS in the UK) wants her to put on at least another couple of kilos before they consider her in the safe zone (so I think that would be a minimum of 51kg, and then of course she will keep on growing for many years so we can’t just stop there). My daughter has improved immensely since she put on weight but her thinking is still disordered.

Thinking of you and wishing your daughter a strong recovery.
Xx
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tina72
"Our daughter is 14 year old and 1.64m tall and has 44.8 kg of weight. That is the desired weight of the hospital personal.
Do you think this weight is sufficent to let her body and mind recover?"

No way she will ever recover on that low weight, as the others said it will be at least 6-10 kg more needed.

Can you please ask the hospital how they get the idea that a patient with severe malnutrition and AN can recover on a BMI 16.6 when even WHO says you are underweight below 18.5? In fact leaving her in this state is inhuman and lengthens the disease and the malnutrition without any necessarity. She could have been much better already if they had done what they should do.
When I read how long she has been in hospital now and that she is tube fed there that is really unbelievable. It is a crime against humanity to give a person completely dependend of them not enough nutrition. Why do they not tube fed her with the amount that her body needs? They should add as much food via tube as needed to see a weight gain of at least 500-1000 g a week. Did your d gain anything in the last weeks?
I would ask for increasing tube feeding immediately tomorrow. Anything she gains in hospital will give you a much better start to take her home.

Tina72
Keep feeding. There is light at the end of the tunnel.
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Kali
Dear Zita,

Here are some articles and studies explaining why weight restoration and food variety is so important in Anorexia recovery, in case you want to read more about it and share the info with your d's team. I have found when talking with providers it is best to mention facts and back them up with research. 

https://thefeedblog.com/2017/01/23/understanding-the-role-of-nutrition-in-the-treatment-of-anorexia-nervosa/

https://academic.oup.com/ajcn/article/87/4/810/4633344


https://www.ncbi.nlm.nih.gov/pubmed/21515121

https://www.ncbi.nlm.nih.gov/pubmed/21448937

and here is an article which I think explains FBT very well:

https://thefeedblog.com/2018/03/01/what-you-need-to-know-about-family-based-treatment-for-anorexia-nervosa/

and an article I particulary like, for parents:

https://thefeedblog.com/2014/04/28/call-it-as-you-see-it-advice-to-parents/

best wishes, 

Kali
Food=Love
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mimi321
Zita wrote:
Our daughter is 14 year old and 1.64m tall and has 44.8 kg of weight. That is the desired weight of the hospital personal.
Do you think this weight is sufficent to let her body and mind recover?

On Monday we have an important meeting with the head of the clinic and the doctors in charge for her case.
Thank you in advance. It gives us strength to know we are not alone with this.


Hi Zita,

Many parents have reported their child needed to reach a minimum bmi of 21/22 to see a real improvement in state. Just like our other organs, the brain is effected by malnourishment of anorexia, and once she is re-nourished, the physical and the mental state improve. I saw a real improvement when my D reached a bmi of 22. For your daughter at age 14 and the given height, she would need to weigh about 60 kg to reach a bmi of almost 22. Of course as she grows taller, this target will move higher.

https://www.eatingdisordertherapyla.com/are-we-setting-recovery-weights-too-low/


Promise me you'll always remember: You're braver than you believe, and stronger than you seem, and smarter than you think. - A. A. Milne
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deenl
Zita wrote:
Our Question:
Does anybody has experience with self-injury behavior, that added later to the sympthomes additional to annorexia?
Any thoughts on what to do.

Our daughter is 14 year old and 1.64m tall and has 44.8 kg of weight. That is the desired weight of the hospital personal.
Do you think this weight is sufficent to let her body and mind recover?


Dear Zita,

Our son had self harm, severe depression and eventually suicidal plans. He was admitted to a psychiatric ward to prevent him carrying them out. He was at that time very underweight. They focused on the depression and thought that he was on the autism spectrum and not on food! The result being that he lost further weight and his mental state wasstillterrible.

The good news is that we removed him from their care, although we still had medical supervision, tried to feed him ourselves with little success, found this forum, had him admitted to general hospital for stabilisation and to get refeeding started and although it's been slow, we haven't looked back. Nutritional rehabilitation has been the solution for us and got rid of the self harm and depression.

Here is an article on blood sugar levels and self harm.

And from about post #34 on the second page is a discussion of medication when severly underweight.

Wishing you continued strength and courage,

D
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, food variety, begin socialising. Sept 2017, back to school FT first time in 2 years. [thumb] 2018 growing so fast hard to keep pace with weight
  • 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.
  • We cannot control the wind but we can direct the sail.
Quote
Mamaroo
Zita wrote:


Our daughter is 14 year old and 1.64m tall and has 44.8 kg of weight. That is the desired weight of the hospital personal.
Do you think this weight is sufficent to let her body and mind recover?



Hi Zita, so sorry to hear about the self harm, it is unfortunately very common (my d cut herself and hit her head).

I had a look at the weight / height for age chart (attached) for your d. At age 14 and for a height of 1.64m, she is close to the 75% curve. My d is 95% for height and 90% for weight (so just slightly lower for the weight than the height). At 44.8kg your d is on the 25% curve, that is too big of a gap. For 75% her weight should be around 55-56kg.


growth-2-20-girls.png 
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.
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Ocras68
Dear Zita

How is your daughter? She’s the same age as mine so I’ve been thinking of you.

Xx
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Zita

   

Thank you all for the sum of your good advices.

After we firmly inquired the doctor in charge, they increased the amount of food for my daughter 2 weeks ago. Still her weight is at 45kg whereas she is 1.64m tall. Further they do now give her the opportunity to choose between real food and tube food.

Actually this situation is a scandal. However the doctors try to avoid everything that could increase stress for my daughter, because of the strong tendency to self injuring behavior (which started after 2 months in hospital) that is serious and hasn't stopped till now. We are in contact with the doctors to discuss and evaluate how it could be possible to take care of her at home with medical support. However our daughter is totally afraid of leaving the hospital. Even at Christmas she preferred to stay in hospital, rather than come home and celebrate with her family for some hours before returning.

Since now 7 months she does not eat real food and is nurtured through the tube. We visit her daily, which she values. She has a total lack of motivation. Though she participates in various therapies and her therapists claim that they see an improvement. It is hard to motivate her for something else.

In my opinion it is a obvious case of hospitalism. We are looking forward to take her home by the time she is ready to agree and when we have everything prepared, namely a clear plan to manage this situation at home. It is very important that she sees we are prepared, so that she can trust us enough to take this decision. Without her consent it is impossible to take her home. One problem is that if it does not work, it will be twice as hard the following time to get her trust to come home.

Despite this whole situation, I am looking forward with hope.

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scaredmom
Zita,
Thank you for the update on your D. Many have had to do this without a lot of professional support and it can be done. I too am hopeful for you. You are well prepared and ready. 
I wish you all the best. Please let us know how it goes.
XXX
Food+more food+time+love+good professional help+ATDT+no exercise+ state not just weight+/- the "right" medicine= healing---> recovery(--->life without ED)
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Kali

Dear Zita,

Thanks for updating us on how things are going with your dd. 
It is great that the dr. increased the feed. Usually eating disorder units will try and increase weight by at least a kilo a week. 
Can you keep an eye on what is happening with her weight to see whether they are feeding her enough to gain any weight and if they are not making progress, discuss with the dr again about increasing the feed more? The catch-22 with this illness is that she is not going to get better until the weight goes on but she will suffer while it is going on, and for awhile afterwards and that is unavoidable, so maybe the big picture is that it is actually kinder to do it faster instead of letting her linger like this for months. And when she has gained some and approaches a healthier bmi it may be time to try and get her to take some food orally in the hospital. What plans do the doctors have for that?

There is also a thread by KLB which describes how her son was mostly weight restored in the hospital with the tube and then they brought him home when he got to a bmi of about 18 and had started taking some food orally. You can find their story here if you want to read about it. 

https://www.aroundthedinnertable.org/post/the-journey-up-9888990?pid=1306526087#gsc.tab=0

warmly,

Kali

 

Food=Love
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