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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andrew77
My daughter was diagnosed with anorexia in January this year. Her weight today was 27.3kgs (about 60 pounds). She is 144cms (4'7"). We are living in Japan. She sees a doctor once a week who gives her a physical check and counsels to her for around 15mins.

She is trying to maintain 1300 calories per day using shakes from the pharmacy plus one small meal. She takes 2.5mg of Zyprexa (Olanzapine) per day.

Since I am in Japan I have no way of knowing if this therapy is appropriate. Her weight stabilized a little but has dropped 1kg over the last couple of weeks. She is at junior high school but not participating in sports. My concern is that she seems very weak and I am worried she should not be going to school. However, the doctor thinks this is good for her recovery. He has given us the figure of 25kgs before she needs hospitalization. 

My question is should she be going to school at this weight? She seems so very frail. Any thoughts or advice welcome. Thanks from a very worried parent. 


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Playball40
I am not a doctor, but it seems to me that her weight is dangerously low.  I also think the calorie count needs to be much higher at this point.  There are others on this board that will chime in soon, but based on my experience, these are my thoughts.
Caroline
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deenl
Hi Andrew77,

Welcome. Our kids are a similar age and our s is 151cm and until he was about 32kgs I was monitoring his heart and blood pressure at home (IP was a disaster for us due to non specialist mental health facility) His mood and thinking were unbelievably messed up and he was suicidal. He is much improved now but mood and thinking still for the birds.

I would be asking questions to try to determine the doctors expertise in EDs. These blog enteries may help you figure out what to ask

http://www.blog.drsarahravin.com/psychotherapy/how-to-choose-a-therapist/ This is obviously for a therapist but there are many relevant questions.

http://www.blog.drsarahravin.com/eating-disorders/red-flags-how-to-spot-ineffective-eating-disorder-treatment/

I would urge you to find out what options are available in Japan. It may be that you have to make do with what is available.

Edit: Just to be clear I am suggesting you look immediately for medical care specialised in EDs and thereafter a ED treatment team. Our experience of a general psychiatric/medical system is that it is not sufficient. Unfortunately, such expertise is not available in very many places in the world like here in the south of The Netherlands so we are muddling through mostly relying on our own strength and this forum but when S was medically unstable we had very close medical monitoring.

Read around the site and find ideas to impliment at home NOW. You are the parents and you do not need permission or collaboration with any doctor to start feeding your daughter.

I would suggest that you really plan well before you start and be ready for explosions. The Eating Disorder (ED) will not be pleased (remember it is not your daughter behaving in this way, it is the starved brain wiring misfiring)

Information is power, so read all you can and ask literally ANYTHING on here. Someone, somewhere will have been there and seen that, I promise.

Again welcome and warm wishes,
D

Edited to include link to medical guidelines for emergency admission to hospital http://www.feast-ed.org/?page=MedicalEmergency I would think it quite likely that your daughter falls within the high risk and should be monitored for medical stability in hospital
2015 12yo son restricting but no body image issues, no fat phobia; lost weight IP! Oct 2015 home, no progress. Medical hosp to kick start recovery Feb 2016. Slowly gaining at home, seeing signs of our real kid.

May 2017 Hovering around WR. Mood great, mostly. Summer 2017 Happy, first trip away in years, food variety, begin socialising. Sept 2017, back to school FT first time in 2 years. 2018 growing so fast hard to keep pace with weight. 2020 Off to university, healthy and happy.
  • 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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sunnyday
Dear Worried Dad,

I just logged on and saw you posted your message just a few minutes ago. So glad you found this parent support forum...I think it will be very helpful for you. There are other fathers on this forum too. This FEAST website and parent forum have been tremendous support and a wealth of information for me.  You found a good place of support from way over in Japan.

I am sure others will hop on soon who are just better than I am with wording and information.  I wanted to let you know your message arrived to the forum just fine....and you are in the right place for parents.

If you are experiencing that niggling feeling something isn't right as a parent....it most likely isn't.  Sometimes the parents here call that "spidey sense".....don't second guess yourself.  Sometimes the medical professionals don't catch everything....the ones we had back in the beginning of our ED journey did not. 

Definitely look around on the FEAST website for all the Hall of Fame posts, general definitions etc.  Take a look at the recommended reading list and try to read the books there. There is a lot of information on the website.  Read everything you can about eating disorders. 

I am glad your d is seeing a medical doctor weekly...however it is NOT good for young teen to be losing weight.  You are right....not ok. Wondering if weight discussions are based on her growth curve and not BMI....should be based on her own growth charts.  Regular meals....Breakfast, snack, lunch, snack, dinner, snack is most important thing. There are FEAST guideline pamphlets with information for physicians concerning eating disorders.  Take a look at those too.  Your d may need more calories/more food....most likely does.....

Others will post soon....glad you found FEAST.  Never underestimate the power of food, fats, calories and sustained nutrition. Welcome...

Daughter diagnosed 2010 (9th grade) with AN/Binge/Purge.  D. had brewing ED thoughts as early as 4th grade. Constant battle with ED from 2010-present.  Co-morbid anxiety & depression & suicidal thoughts & self-harm.  Most recently in intense DBT/ED program outpatient . Weight restored but not happy about it.
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sk8r31
Hi andrew77,

Welcome to the forum, though sorry you have a need to be here.  You will find the very best information here on evidence-based treatment for EDs, as well as the peer support to get through this difficult journey, and help your d into recovery and health.

Some time ago, we had another member from Japan, stargazer3310, and she had chronicled her d's journey through to recovery on a thread called "Sayoko's road to recovery".

I have pulled up the thread for you here.  The thread is lengthy, and spans a couple of years, but I think you'll find very useful information there to help.

Based on the info you have given, your d is in a very compromised state medically, and you would be wise to have her seen by an MD or GP at least weekly if not twice a week.  The Academy of Eating Disorders has a medical management pamphlet which is in pdf format and can be downloaded and given to medical professionals to make sure they are assessing your d properly, including orthostatic blood pressure readings.

If you feel your d is too fragile for school, I would pay attention to that instinct.  The most important thing at present is to get your d's weight up, first for medical stabilization, and then to get back on her growth curve.  The latest evidence is that nutritional rehabilitation as soon as possible leads to the best long-term recovery for those suffering from an ED.  Many parents on the forum have had their kids take a hiatus from school, without much detriment.  Health is the most important thing; school can wait.

Sending you strength and support,
sk8r31
It is good to not only hope to be successful, but to expect it and accept it--Maya Angelou
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iHateED
Andrew, a warm welcome to the group, though so sorry you need to be here with us.   From what you describe, your D's weight needs to increase asap.  You ask if she should be taken out of school. The short blunt answer is probably yes.   Her best chance for recovery is to get the weight on as fast as possible, eating 3 meals and 2 or 3 snacks each day... this also includes burning as few calories as possible each day.   When she is at school, who can monitor her food intake?  Her activity level?  She may be throwing out lunch and telling you she is eating it.   The only way you can be sure of caloric intake is to watch the food get eaten.   I have two D's who suffered with eating disorders and both are in strong recovery now.  My younger D was in high school at the time and I drove to her school every day at lunch time.  She would come out to the car, eat lunch with me and when she was done, she could return to school for the afternoon.   Your D needs to get the message from you, her parent, that this is a very serious illness and nothing is as important as getting healthy again.   Her ED won't want to hear that and will likely cause more stress and anxiety for her, which she will in turn take out on you.  Don't take anything she says or does right now personally, it is her starved brain that is doing the talking right now.   In my opinion, therapy won't do her much good right now.  It's like talking to an alcoholic while they are still drunk. 

So how can you get her weight up?  We can help you if you need ideas on how to increase her calories each day.  My D needed over 3500 calories each day for months to gain weight.  I started preparing all of her food and made it as calorific as possible.  She was not allowed to see me prepare the food.  I didn't give her choices as this actually adds to their stress and anxiety.   You would think it would help but it causes her brain to go into overdrive thinking about which choice has the lesser calories. 

Hang in there and please feel free to ask more questions.
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AUSSIEedfamily
Dear andrew77,

As sk8r31 has indicated if you look at old posts from early 2013 you will see the ones from stargazer3310 who lived in Japan & found good people.

Again I am not a doctor so medical advice is not something for me to offer. However from what you have posted I would suggest that she needs to be getting a lot more food than she is currently eating and it would be a really good plan to get a doctor who understands how to treat eating disorders & understands the starvation syndrome and how to treat that.

Not sure about the doctors weight figure. The clinicians I currently collaborate with use a whole range of details to decide when the person is medically unwell & needing hospital for medical stabilisation.


Others here have given you great information.

sk8r31 has indicated this from the Academy of Eating Disorders has a medical management pamphlet which is in pdf format and can be downloaded and given to medical professionals to make sure they are assessing your d properly, including orthostatic blood pressure readings.

There are others with slight variations. I would certainly be giving this to your doctor & be insisting he use it to assess your daughter.

As a dad I would recommend that you read up as much as you can about how you can participate in the treatment & recovery & collaborate with clinicians. If the clinicians you see are not prepared to work & collaborate with you then I would consider looking for ones who will & believe that you are part of the solution to recovery

ED Dad
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andrew77
Thanks everyone, I can't say how much I appreciate the support and guidance here. The whole things has crept up on me a bit. I was at a loss as to what to do and was relying on the local hospital to provide the best treatment. Unfortunately I am not sure how appropriate the treatment is here. My feeling is that Japan lags behind when it comes to the treatment psychiatric illnesses and eating disorders. Certainly treatments in Japan seem to be far less aggressive than elsewhere. The goal of the doctor here appears to be to stabilize her weigh at a certain level so she realizes she can eat without gaining weight. He believes this will calm her down and then she will start to eat additional calories voluntarily. She did start to add very small snacks a couple of weeks ago but hen stopped again.  

Since I am new to this site it seems the best thing I can do now is take a good look around and follow up on the links and PDFs you have so kindly provided. (Also thanks for the link to Sayoko's story). Using this information I will put together a more assertive nutrition plan. I had a long discussion with my wife last night and we will meet with the doctor on Friday and talk about our concerns. My wife want me to keep our daughter at school for one more week and if there are still no improvements, or she drops again this week, then she will consider keeping her at home.  

Thanks again for the links and the pdfs, your help is greatly appreciated by both me and my daughter J. I hope I am able to contribute to this site in some way in the future.   

A

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Torie
andrew77 wrote:
My question is should she be going to school at this weight? She seems so very frail. 


Welcome, Andrew. 

As the others have indicated, getting your d to eat fully is the most important thing right now (with the possible exception of medical monitoring). Anorexia is a very serious illness with mortality rates similar to those of childhood cancer. Education has always been a very high priority for me so it was a real adjustment to have to learn to put health first - above even education.

Having said that, though, I also keep in mind that being a unified team with my husband (D's father), is also super important. This is especially true if the available professional support is less than optimal. Personally, I would feel very strongly that my d should not attend school at such a low weight: Anyone who is not well enough to eat fully is not well enough to attend school, in my opinion. If your wife is emphatic about your d attending school next week, might she be agreeable to requiring your d to eat a full breakfast before leaving for school and ensuring that snacks and lunch are carefully monitored as well? I learned from the good folks here to say, "When you have finished breakfast, you can leave for school" rather than "If you don't finish your breakfast, you can't go to school." And when she has finished her snack/lunch, she can go back to class. 

You said, "She is trying to maintain 1300 calories per day using shakes from the pharmacy plus one small meal."

I'm sorry to be blunt, but this is not okay - that is NOT NEARLY enough nutrition for a 13-year-old girl. I'm sure you're aware that a healthy teenage girl would find it extraordinarily difficult to limit herself to such a small amount; that your d has to work to consume even that much shows how powerful this terrible illness is.

I'm going to repeat that full nutrition is essential. If your d had cancer, I'm sure you would insist that she comply with the FULL treatment regimen, no matter how traumatic and difficult. What your d needs is FULL nutrition.  Making that happen might be the most difficult challenge you ever face, and the most important one.

I'm so sorry you needed to join us here, but this really is the best place for information and support. Please feel free to ask as many questions as you like.

Hang in there. 

-Torie
"We are angels of hope, of healing, and of light. Darkness flees from us." -YP 
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momon
I strongly encourage you to read  the medical guidelines sk8r linked to and know what they say and take them to your doctor. You cannot trust that your child's doctor will know how serious a life safety risk is created by your d being so malnourished is or what signs to look for. We had a doctor who didn't check a single one of the crucial things to check when d fell ill, sort of ridiculed me for being so worried, and when we 2 months later gave her a medical eval form from our d's ED psychologist that  required an EKG, the pediatrician told us the EKG came back fine. A year later I got that medical record and found out the EKG in actual fact showed a level of bradycardia that should have required immediate hospitalization rather than the "your daughter only has a mental problem" that the pediatrician said.  My d was a 10 yo at 58 pounds at that time.

Especially with a child at such a low weight, things can go downhill fast. It is really important that you personally know what to look for and be ready to demand that the doctor's office send her for  cardiac monitoring if needed. I'd immediately stop school and focus on getting her weight up with careful medical monitoring. We began with a goal of 1-2 pounds of weight gain a week. We didn't count calories, we just pushed and pushed for more food and if we got that weight gain, we knew we had the right calories.

Sorry to sound scary but I don't want anyone else's child to need to rely on luck to not have a serious medical consequence, because they have an ignorant doctor. I know how the shock of this illness feels and hope you come on here for help and info.

My d is a healthy growing 13 yo now. This illness is beaten by parents every day, you can do it!
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cjac16
I am so so sorry you have had to find this site but you really have come to the best place.  1300 calories is not nearly enough calories for your d - even double that amount may still not be sufficient for weight gain.  Food really is the best medicine for your d.  I would imagine her BMI is very low.  Has she had her heart checked out and bloods taken?  My d needed to gain 0.5-1kg per week and in order to do this she had to have AT LEAST 2,500 calories per day in the form of three meals and three snacks.  I know some on this site needed to feed their children a lot more than that to gain weight.  Is your doctor recommending 1300 calories per day?  Is there another doctor you can see?  I really don't mean to alarm you but you do need to act as quickly as possible on this.  If you d is feeling weak I would keep her at home and start getting those calories into her where you can see her.  You will find a wealth of really good information on this site.  I don't know where we would be today if it wasn't for here.
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Foodsupport_AUS
Welcome to the forum. You have already received good advice.  I agree that it is probable your D is not safe at school, and likely she may not be eating there anyway. Your D is seriously ill and does require a lot more food than she is getting. Real food is probably better as it has a better mix of vitamins, minerals, proteins, carbs and fats than her current diet, though when really struggling all food is good.  There is lots of great information here, please ask more questions.  
D diagnosed restrictive AN June 2010 age 13. Mostly recovered 10 years later.  Treatment: multiple hospitalisations and individual and family therapy.
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gdawgs
Your situation sounds very close to what we went through with our son, except I believe you caught it a bit earlier than we did.  When our son was diagnosed earlier this year, he was 12 years old, 4' 8" 60.5 pounds at the lightest.  As most everyone else has mentioned, I'm not a doctor nor an expert on eating disorders, but I've lived through the hell.  Keep in mind though that I would consider many people on this site experts in the field compared to many medical doctors who just don't know a lot about treating eating disorders.

andrew77 wrote:
The goal of the doctor here appears to be to stabilize her weigh at a certain level so she realizes she can eat without gaining weight. He believes this will calm her down and then she will start to eat additional calories voluntarily.


I believe the doc is partially right and partially completely off base.  The part about eating without gaining weight is WRONG or at least the timing is backwards.  She NEEDS to gain weight.  Once she's at a healthy weight for a period of time, the fog of the eating disorder will lift, and she'll be able to think clearly about food again.  At that point, she will be able to choose foods on her own and live like a normal kid.  But until she gets to that point, she needs to be heavily monitored to make sure she's getting the calories she needs.

Again I'm no expert, but I'm assuming your daughter is currently completely overtaken by the eating disorder, and her thought processes are all messed up.  She cannot make common sense food choices.  If left to herself, she will most likely reduce calories further.  And things get bad quickly(medically) from there. Our son was down to 400 calories per day before he was put in the hospital.

What are her vitals like(heart rate, blood pressure, body temp, etc.)? I would assume all of these are low which should set off some alarms at the Dr's office.  Maybe they aren't that low yet, but given her weight, I would have to believe they are.
Some clues of severe malnutrition are low vitals(our son's heart rate was down to 40 bpm), cold hands, hair falling out, fine hair starting to grow on the body, dry/cracked skin, little sleep(waking up very early, our son was waking up at 4am on his own), withdrawn personality, no energy.  My son told me recently that he used to sleep on the couch  a lot because he didn't have the energy to walk to his room.  He also used to crawl up the stairs on all fours because it was too difficult to walk up.  You can observe many of these things and don't need to Dr for them.

Like others have mentioned, she needs more food, and soon.  Just as reference, the nutritionist at the treatment center we went to told us that this is their typical calorie schedule for patients when they are admitted(it may be customized for different needs, but it's a good baseline) .  They start them out at 1,500 calories per day.  Then on every Monday, Wednesday, and Friday, they get bumped up 500 calories.  For example, our son went in on a Friday and started out at 1500/day.  On Monday it bumped up to 2000, Wednesday - 2500, Friday-3000, etc.  If they are there for a few weeks, they will take them up to 6000/day.  This is a very aggressive schedule and it tough for the kids, because they feel stuffed all the time.  If you are doing it at home on your own, I'd maybe move a little slower.  When you start refeeding, their bodies go into a hypermetabolic state and the burn calories like crazy as their bodies repair themselves.  This is why it takes so many calories for them to gain weight.  Someone else mentioned it earlier, but when you start re-feeding, you will awaken the eating disorder beast and it is not pleasant.  Prepare to be yelled at frequently.  Lots of "I hate you!!", "leave me alone and let me die" sort of talk.  Just keep in mind that this is not your child talking, it is the eating disorder.  This goes away once they get to a healthy weight for a period of time.

Best wishes to you and your family.  Come here often for help and support.  Like I said, there are many experts here.

Sorry for the long post.



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kassie
Andrew,
Glad you found this site. It has helped my h and I gain the strength to take COMPLETE charge of our Ds eating.
I know all this info WILL make your head spin but digest and reread-- that helped me.
I know others have touched on it but please, please, please understand the cardiac implications of this evil disease. We did not and our D was in hospital for over 2 weeks getting over 3000/day with tube feeds and eating and it took all 2 weeks for her nighttime heart rate to come out of 30s. Her phosphorus and potassium were so out of whack she could have had a heart attack at any moment before she was admitted.
Check your Ds heart rate while she sleeps too.
If it's under 50 go to Dr or hospital.
The scary thing is that our D was eating 1600-2000 cal/ day WHILE her heart was taking a hit.
( we did not know to watch her 24/7 and she was doing hundreds of crunches,push up and squats. Each day)

This is drastic disease and you need drastic measures
How I wish I knew that back in January

2 very helpful books-- for me and h
Are : helping your teenager beat an eating disorder by James Lock---- doesn't matter that she's not a teen yet
And. "Brave girl eating" by Harriet Brown ( was like someone videotaped my family and wrote about it)

I got both as E books on my phone.

What has helped me the most is FEAST and knowing I'm not alone and now, you and your w aren't either.

You passed the first hurdle of knowing there is a problem.

My thoughts are with you and your family.

Kassie
glad I'm not alone in this
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sahmmy
She needs 3 meals + 3 snacks greater than or equal to 3000 calories per day. I don't know how typical meals are socially structured in Japan, but in the US it can look like this: breakfast (6 am), snack (9 am), lunch (12 noon), snack (3 pm), dinner (6 pm), snack (9 pm), at least 3000 calories per day. That works out to to about 500 calories per meal/snack. She should eat about every 3 hours. Increase her caloric intake slowly as described above. Try a couple of weeks on 3000 calories per day. Weigh her weekly. She may require more calories than that as her metabolism recovers from the starvation.
d=18, R-AN, Generalized Anxiety Disorder. Refed at home with information gathered from this forum and lots of books. Relapsed. Refed. Relapsed. Refed. 17 sessions with an excellent individual therapist. 19 sessions with unhelpful dietician. 3 sessions of DBT (didn't like it). Psychiatrist available if needed. Prozac - fail. Lexapro - fail. 5HTP - fail. Clorazepam/Klonopin = major improvement, only used when necessary. Genomind SLC6A4 short/short - not able to process SSRI's.
d=15, lost 14 lbs in 8 months, Ped [nono]diagnosed as a crystal on a hair in the ear canal
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