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

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bonny Show full post »
AUSSIEedfamily
Dear Bonny,

I too hate BMI it is a very flawed formula that has not a single ounce of medical scientific basis to it. It was developed by a mathematician with no medical training at all. There are many studies which show how flawed it is for measuring overweight & obesity. It should never be used in isolation for deciding a person's medical condition. If you use it to measure any of the people with lots of muscle they all end up being defined as obese regardless of their actual level of health & fitness

I will e-mail you a document that is a draft from the Western Australian (WA) Eating Disorders Outreach Service. It is for use in WA government hospitals to decide how to assess eating disorder patients. Pages 6 & 7. It states that BMI is just one indicator & not a precise measure.
ED Dad
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mjkz
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Can I ask how low your D's weight was (and anyone else who would like to comment!) when you were saying eat or nothing happens? Was she in the danger zone?


When my daughter was very low weight nothing worked.  She ended up having to be hospitalized and tube fed.  It was only after she got up over a BMI of 16 that eating at home happened.  My daughter's recovery looks somewhat different than what you are shooting for because of comorbids and getting sick in a time where parents were told not to be food police.  Nevertheless I still would do complete bed rest even at a normal BMI if she was showing signs of her eating disorder because I know how fast she spirals down.  A loss of 2-3 kilos and my daughter is right back into anorexic thinking and sinks faster than I could ever imagine.  I wish this forum had been around when my daughter first got sick. Her recovery might look very different if it had been.  Things I have learned here though is

-Guilt.  Useful emotion at times but not in this fight.  You normalized what was going on. Entirely understandable.  None of us were looking for an ED in our kids.  Don't waste time feeling guilty that you didn't see it, that someone else had to point it out, etc.  This is a brain biologically based disease that depends on genes and luck of the draw.  Save the energy to fight for your kid.
-Address every symptom that is eating disordered because it is life or death at any BMI.
-Continue supervising far longer than you thought you would need too.
-Weight recovered often means a higher BMI than original weight before weight loss.
-BMI means nothing.  One can have a normal BMI and be extremely sick both physically and mentally.
-Get weight on as fast as possible in any way possible.
-No sports or physical activity until fully weight recovered and maintained for a period of time.
-Maintaining weight in restricting anorexics takes more calories than a "normal" person for a period of time after weight recovered.
-Brain healing takes a long time and does not really start until every symptom is beaten to death.
-You are not at fault.  You didn't cause this but your kid is never going to get better if you don't fight for them.  That means you may have to take control of things you never controlled before.  If you don't and continue to try to keep peace, the ED will never leave.
-Your kid is still there being held hostage by the ED.  No matter how awful things get, he/she is still in there.
-Take care of yourself too. I had emergency surgery a month ago because of an abdominal mass I ignored.  Your health is as important as your kid's health.
-Don't be afraid of talking to people about ED and asking for help.  Not everyone feels this way but by being open with people I have found help where I least expected it and people alert me to my daughter not eating-helped avoid some serious relapses.
-A calorie is a calorie.  It is a measure of energy and any calories are good. There are no bad calories or bad food.
-Find what works for you and use it.  If your therapist is not helpful, find one that is.  If your dietitian is screwing things up, get rid of him/her.  You are the coach of your kid's team and you make the decisions.  You get advice from professionals but at night they go home and don't live with your kid.  You know what is best.  If that means you pick bits of one approach and bits of another and it works, great.  Go with it.
-Follow your instincts.  You get that sneaky sense something is wrong-go with it.
-If you don't hit this hard and fast, this could be forever.  I said my daughter's recovery is different than others here because I didn't know a lot of what I listed above.
-Full recovery is possible and that should be your goal.
-Do not keep your kid at home if you can't refeed effectively.  There is no shame in asking of help nor needing to use a hospital.  FBT is primarily an outpatient treatment program that only works if you can refeed your kid.  If you can't for whatever reason, skip the guilt trip and move to what does work even if that is admission to a hospital.
-Not every family can do FBT and that is fine.  I am a single mom who has had to use the hospital on numerous occasions.  Note the word "family" in FBT.
-Help comes in many forms.  Your spouse may not be able to hold it together to do refeeding and that is fine.  He/she can still stand with you presenting a united front to your kid, help by making meals, grocery shopping, emotional support, etc.
-ED is the ultimate divide and conquer disease.  It will see cracks in relationships and exploit them.  Even if your spouse cannot refeed, he/she can support you by presenting a united front.
-Keep your other kids out of it as much as possible i.e. don't use the other kids to spy on the ED kid.  It is traumatic enough to see your loved one going through refeeding and mom and dad stressed to the max.  Get the other kids help if they need it and do any supervision on your own or hire someone to supervise a meal, get help from school, etc.
-Trust.  This will be the first thing that will be sacrificed in this battle.  Your honest to a fault kid will lie to you, hide food, call you names and act like he/she is possessed.  That is the ED.  Do not trust your kid while he/she is sick.  He/she will tell you things were eaten when they were not, drunk when the dog or cat ate them and hide food in places no sane person would ever put food.
-Your relationship will survive and in fact be stronger although it may not seem like during refeeding.  You will do things you never thought you would like hiding calories in food, swapping wrappers on things so your Ed kid thinks he/she is drinking skim milk when in reality it is full fat, etc.  Your kid will not remember what went on during refeeding and the most important part is to get the weight on, not making sure your kid trusts your cooking.  Just as you can't trust them, you may need to do things that will jeopardize their trust in you.  You are saving their lives, giving them what they need to survive and all is fair in this war.  Worry about the outcome (i.e. keeping your kid alive) rather than being their friend or worrying about whether you will ever have a relationship with them.  They aren't capable of a relationship while starving so the best thing to do toward making that relationship with them is to get them weight recovered as quickly as possible.
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kayjay
Hi,

I read that you're due to do mft soon. My daughter is on the ITP at the Maudsley and we are did our four day mft in October, and are half way through the follow up days.

As a family we have found mft helpful in many ways - but our daughter has found it very stressful. I think part of this is seeing her dad and myself learning about her ED and coping strategies, and seeing this as a threat to the anorexia. The other side is that the four days are very intensive - at home and at ITP between meals we try to do things other than focus on anorexia, but on mft it's a series of workshops and exercises around anorexia with other families sharing experiences, she's found this to be very challenging - most of the young people in the group have felt the same (there are 6 young people plus their families in the group). It's a good idea to get out at the lunch breaks, even just to go to Costa round the corner.

Our daughter was an athlete prior to her ED, her weight dropped quickly and dramatically to a BMI not much above 13. After 7 weeks of ITP it's over 15 so good progress is being made. We are very much being told absolutely no sport until she's fully weight recovered - and for her the 100% weight for age they're looking at is higher than her pre-ED weight. She has told her team that she's starting to feel a compulsion to exercise as her energy levels are returning, so another thing to be on alert for :-/

We recently started having the first portion of our weekly family meeting with her team without her being present - it's been quite a game changer for us - just having the freedom to ask questions and seek clarification without worrying about how her anorexia would construe things has been a huge help, it's definitely worth enquiringly about.

All the best x

D, 16, diagnosed with AN Aug 2016. One day at a time...
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bonny
So we are back to where we were on 4th November. Weight is 67.3kg, HR is 42. We have a cardiology appointment this afternoon.

Apparently they don't use BMI, but some height/weight charts and he is at about 103 on them (no idea what that really means, but 100 would be really low for him) and needs to be at 115 or so. It is because he still has muscle that weighs heavy that the weight apparently doesn't look so bad, but it is actually bad. 

The doctor said that he could be admitted to hospital, but that they would try to avoid that (cardiology may take a different view) He could be taken onto the ITP, but as we are about to do MFT starting next week, we are going to try at home (with the proviso that he will go onto that if home isn't working) It was a pretty emotional meeting. 

He has agreed to eat all the food on the plan bar the afternoon snack, and ate all his morning snack just now, like a normal person and no crumbs were left which has given me a little ray of hope.
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melstevUK
Hi Bonny,

To go back to your first post:

" so the doctor put him onto a Weight Maintenance Plan and said he could go back to normal training/football."

That doctor did this when your s was around 69 kilos and look how ill he is at 67.3, not that much lower.

I know you have a lot on your plate at the moment and you need to look forward rather than backwards, but do you know who the consultant psychiatrist is who has ultimately responsibility for your s's care?
You need to highlight that your s's life was endangered because his case was inadequately managed.  You can express this in the nicest possible way but it needs to be said.  He was nowhere near his pre-recovery weight and he should probably have been at more than that given a few more months had gone by and he is a growing teenager.

No way should your s have been allowed to do exercise when still so ill - and maybe the doctor was new and was trying to be nice but she actually made things worse and took you backwards.  This is very similar to BattyMatty's case.

It should not be too difficult to identify the consultant psychiatrist and write a letter if you are unable to get his or her email address.  I know you will not feel like doing it right now - or you might actually feel better if you do say something.  Only when parents speak out will change take place.   
Believe you can and you're halfway there.
Theodore Roosevelt.
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mjkz
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So we are back to where we were on 4th November. Weight is 67.3kg, HR is 42.



I know it probably feels like you are back to where you were but you aren't really because you are much better informed now about how to go forward in the best and healthiest way for your son.  I'm so sorry you had to learn this way but knowledge is power and you got a lot more of it now. 

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He has agreed to eat all the food on the plan bar the afternoon snack, and ate all his morning snack just now, like a normal person and no crumbs were left which has given me a little ray of hope.


So why not all the food on the meal plan?  Are you moving the food from the snack to other meals and snacks?  One of the reasons you might be seeing eating "like a normal person" is because his ED just got what it wanted and is not being challenged in the same way.
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bonny
It does seem like a strange decision when he had lost so much weight and was still in shock from the hospital stay, etc. But I think the doctor was trying to find something that would motivate him. 

We talked about what would happen if he continues to lose weight and the "threat" of a higher level of care seems to have motivated him to eat more and finish his meals/morning snack. This means he is eating quite a bit more than the last week or two. However, he still isn't eating all his meal plan - we are trying to take it step-by-step, with him onboard, but it is impossible for us to get him to eat/drink something that he has decided not to eat. We are trying to work with him rather than use force which has never worked with him in his whole life!

As you say, "Some of us have found that when our kids were threatened with a higher level of care, they suddenly complied, but it is often short lived" - that is exactly why we are trying to work on him changing his mindset rather than relying on threats, etc. I or his dad supervise absolutely everything. He is constantly by my side or in my sight. He sleeps on the floor in my room at night. I watch him throughout every meal and snack and am certain that he eats everything I give him or it is left on his plate. 

But clearly if this doesn't work, he will need a higher level of care than we can provide. The doctors know this and are willing to admit him at any time. However, they have said that research shows that the prognosis for children who are admitted to hospital is not good. And I know that currently kids in the UK are being shipped hundreds of miles away to residential units as there are not enough places.





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mamabear
Bonny,
I am so sorry things are so hard with this disease. It is so brutal on all of us.
You and your team continue to use words like " motivation" and " threats".

This is not a logical illness. The " motivation" to get better doesn't have to be there for refeeding to work. Many ( I'd say the majority) of us had kids who were talking of death and asking to die. The constant noise in their heads from the ED doesn't allow for " motivation". And talking about needing hospital care/tube feeding/ no sports etc is not a " threat", it is reality.

everyone who comes here thinks they have a uniquely stubborn child. Fact is we all have kids with severe eating disorders.The vast majority fight us like hell.

I strongly urge you to start upping his fats and cals. A daily milkshake literally was the most important thing in my daughters refeeding and for years during puberty. It was 2000 cals alone.

You CAN do this. I can tell by what you write that your true son desperately wants YOU to be in charge right now. His ED MAKES him fight you. You ARE stronger.
Persistent, consistent vigilance!
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mjkz
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The doctors know this and are willing to admit him at any time. However, they have said that research shows that the prognosis for children who are admitted to hospital is not good


I don't agree with that at all.  Many of us have had to use hospitals for medical stability and when we can't get enough eating to occur at home.  Home is the best spot as long as treatment is going forward and your kid is medically stable.  If not, then hospital is the best place for them and I would hate to see someone keep their kid at home just because a doctor said admitting them leads to a poorer prognosis.
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melstevUK
Bonny,

"- that is exactly why we are trying to work on him changing his mindset rather than relying on threats, etc"

Again, you are being let down by the doctor who is managing your s's care and mamabear is absolutely right.  There is no logic involved with ed patients, especially with underweight an patients.   There needs to be a clinician who lays down the law that all food has to be eaten, the meal plan has to be followed and weight has to go up, up and up.

Looking for motivation is as good as doing deals with the illness and a sign that the doctor simply does not understand an.  The clinicians should be telling your s straight that he has to eat everything - snack and all.  His mindset will not change until way beyond full weight restoration and beyond.  In fact it is quite unfair on the patient to put the expectation that there should be a change in mindset when it simply cannot happen when weight is severely compromised.

There is also confusion about prognosis and the clinical understanding that outcomes are better if a patient does not go into hospital - a patient has to go into hospital because weight has dropped so low and the patient is so severely ill that recovery will inevitably take longer when the brain has been so severely impaired.  But struggling along for months and months with no improvement is not supposed to be the alternative to hospital care and is not what was envisioned as providing a better prognosis.  At present so many clinicians think they are doing a better thing by keeping patients making no progress out of hospital - when in fact if they were pushed back in IP for only a couple of weeks to get things moving again would be so much better than floundering around. The idea is that patients in an outpatient setting can carry on with their normal lives - but clearly your s cannot do this because he is too ill to do sport.  There are misunderstandings all round about what is better for the patient in the longer term and the research has been misconstrued to some extent.

You are doing great - your doctor or team are not.  And I would not hesitate to raise your concerns with the consultant psychiatrist.  But if you make it clear that YOU will stand firm and insist on a higher level of care if he does not comply with YOUR rules about what needs to be eaten, this may well work.

Again as mamabear says - up the fats and the calories.
Believe you can and you're halfway there.
Theodore Roosevelt.
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mjkz
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This means he is eating quite a bit more than the last week or two. However, he still isn't eating all his meal plan - we are trying to take it step-by-step, with him onboard, but it is impossible for us to get him to eat/drink something that he has decided not to eat. We are trying to work with him rather than use force which has never worked with him in his whole life!


Yeah but with as sick as he is, you don't have a lot of time to get him onboard. If you truly want to keep him outpatient, he needs to be eating the entire meal plan all the time.  The only thing that is going to change his mindset is getting him weight recovered as quickly as possible and then time.  Brain healing takes a lot of time and the willingness to eat that you are seeing now may be to avoid being inpatient but it may also be because his eating disorder got what it wanted-no afternoon snack.  Often times when you give in to the ED, you get a very cooperative, mellow, "normal" kid for awhile until the next issue crops up. 

What does affect prognosis is how fast you get your kid weight restored and keeping him/her there.  The faster you get weight restoration, the better on all fronts.  Trying to negotiate with him sounds good but it will backfire since there is no logic involved in trying to starve yourself to death. 
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Torie
It does seem like a strange decision when he had lost so much weight and was still in shock from the hospital stay, etc. But I think the doctor was trying to find something that would motivate him. 

Yes, well, please keep in mind how many here have had professional "help" that is worse than no help at all (raises hand).  Just because the doc is a doc doesn't necessarily mean he knows what he's talking about.

We are trying to work with him rather than use force which has never worked with him in his whole life!

We don't force them to eat - we require them to.  Just as we would require them to comply with treatment for any other life-threatening illness.

However, they have said that research shows that the prognosis for children who are admitted to hospital is not good.

Oh good grief.  At best, that is such an unhelpful remark.  I would love to ask him what he thinks the prognosis is for children who meet the guidelines for hospital admission, but aren't admitted (for any illness).  Your son has AN, a life-threatening illness.  He needs whatever level of care he needs.  End of.  Offering a lower level of care will not improve the prognosis.

Of course, there are many reasons we prefer to be able to treat our kids at home, for whatever illness might befall them.  But sometimes they need a higher level of care.

Here's the thing: Your s needs to regain the weight he needs.  The sooner the better.  Whatever gets you there is what is best for him.

I hope this message isn't unhelpful - I get so annoyed at the professional "help" that's around that I get a little emotional sometimes.

Hang in there.  It does get better. xx

-Torie
"We are angels of hope, of healing, and of light. Darkness flees from us." -YP 
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BattyMatty_UK
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I get so annoyed at the professional "help" that's around that I get a little emotional sometimes.


Me, too, Torie (raised hand...) Again I'll say - trust your gut instinct and what you have learned about evidence-based treatment, research, etc etc (there is plenty on the FEAST website along with links). If your gut instinct is screaming out "NOOOOOO!" then trust it.
Bev Mattocks, mother of 24-year old male DX with RAN 2009, now recovered. Joined this forum in 2010 - it was a lifesaver.
 
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