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Old 13 Sep 21, 09:04 PM  
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#31
lfc_sarah
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Sorry I don't have any helpful advice to give but massive hugs to you and your family xx
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Old 13 Sep 21, 10:10 PM  
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janeywaney
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Hi Ali

So sorry to read that everything is so up in the air for want of a better word.

You an Amazonian Warrior! Not just any old warrior 😊

You have all gone through so very much, rant away we are all here for you to help prop you up, as much as strangers can!
Sending much love to you and your family. Carry on being that amazing mum that you are, and the best Amazonian Warrior you can be!

Jane 🤗🤗🤗🤗
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Old 13 Sep 21, 10:57 PM  
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My son suffers from anxiety and has been slim since he started school. He is now 17 and no longer suffers with anxiety like he used to (itíll always be there, he just handles/manages it well 90% of the time). I have just checked his BMI as you mentioned your daughters and I was curious to see if my sons was still low. As of today his BMI is 1. Yes, 1! This is actually the highest it has been for years, itís normally off the chart below 1. He always wants to eat more, especially being a boy and having 3 brothers that are all bigger than him, 1 has a large build and the other 2 work out/lift weights. He just canít eat large amounts of food on a regular basis. He can sometimes eat a large meal but then wonít eat another large meal for days. His brother will nag him, wind him up and say itís SO easy to put weight on but the reality is that for him, it isnít easy. I have never considered him to have an eating disorder and it has never been mentioned to me either. I hope for all of you that this is a blip and if connected to your daughters anxiety then as the anxiety reduces it will improve.

I think you are amazing. Having a bad day is normal and we all need to vent sometimes. ĎA problem shared is a problem halvedí (the cheesiest I could come up with). I really hope that things improve for you all soon. Sending you love and hugs 💜
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Old 13 Sep 21, 11:35 PM  
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On my goodness you certainly are a warrior mum 💗 everything you have been through I donít think for one minute if it was me I would still be standing let alone able to deal with all of this , take all the time you need and come on here and get it out your system any time you need to , I think as you can see you have complete heartfelt support and love on here 🥰 ❤️❤️
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Old 14 Sep 21, 08:25 AM  
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buryboy
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Oh Ali - so sorry to hear this ( but to be honest not surprised from your other posts / messages)

I am just about to go into work so donít have time for a detailed response right now ( will send one tonight ) but please

- look after yourself and partner if you have one as well as DD
- ensure you stick to the plan rigidly . Any waivering/ reduction in it will show as a weakness to DD that she will likely jump on board to try to wrestle that control back . You have to be the Ď tough loveí parent .

Look up re-feeding syndrome . The dietician / ED service will be guarding against this so very much doubt that the meal plan will be pushed too high initially

Bear in mind your DD may lie to you when answering questions - their defence mechanism

I have so many questions . Sadly no magic answers but with a BMI of 14 I think the best thing is to keep her off school ( can she get work sent home ?) as itís getting dangerously low . ( DD BMI was 13 when hospitalised ) Dazed must be measuring her sons BMI incorrectly .

Keep strong - I will PM you my contact details later in the day when I have finished work
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Edited at 08:32 AM.
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Old 14 Sep 21, 09:50 AM  
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I don't have any advice to give but I do know (although mildly compared to the situation you're going through now) how much a parents heart hurts when they see their kids struggling. I never realised how much I could wish to take on someone's pain/battle as my own until I saw my kids struggling with their anxieties (both struggle but in very different ways). You have my love and my respect and if I could share some strength with you too, I absolutely would but honestly, you don't need it. You're amazing. We're all here for you xx
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Old 14 Sep 21, 11:27 AM  
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alibeau
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Originally Posted by buryboy View Post
Oh Ali - so sorry to hear this ( but to be honest not surprised from your other posts / messages)

I am just about to go into work so donít have time for a detailed response right now ( will send one tonight ) but please

- look after yourself and partner if you have one as well as DD
- ensure you stick to the plan rigidly . Any waivering/ reduction in it will show as a weakness to DD that she will likely jump on board to try to wrestle that control back . You have to be the Ď tough loveí parent .

Look up re-feeding syndrome . The dietician / ED service will be guarding against this so very much doubt that the meal plan will be pushed too high initially

Bear in mind your DD may lie to you when answering questions - their defence mechanism

I have so many questions . Sadly no magic answers but with a BMI of 14 I think the best thing is to keep her off school ( can she get work sent home ?) as itís getting dangerously low . ( DD BMI was 13 when hospitalised ) Dazed must be measuring her sons BMI incorrectly .

Keep strong - I will PM you my contact details later in the day when I have finished work
Buryboy, thank you, I hope you know how much I appreciate your input...

I have hundreds of thoughts and questions whizzing around in my head this morning so I'm just going to just type them up as they arise... I just feel so conflicted...

I'm going to air them openly rather than by PM as I am open to hearing everyone's opinions on this...

1. I have read up on re-feeding syndrome and agree with your comment, however, hand on heart, I would struggle to eat the quantity of food on her planner.

2. I do not believe that DD has ever made herself vomit. Am I deluded? I don't know. Is DD a fabulous liar, I don't know, I am now questioning everything I think about who I beleive my DD to be (this is heartbreaking for me) and the relationship we have (not down to you I should add)... I should also add that given the circumstances of DD1's death, vomiting is something that we would take extra 'care' around than most and we would all agree is something we would actively avoid, I could be deluded.

3. As you probably know DD has to be supervised after each meal and snack. So yesterday we were sat in the lounge and after her AM snack she said her tummy felt like a washing machine and that she might be sick. She tried to hold it in for quite some time but eventually vomited. The food she brought up looked as good as new, no nasty smell, I'm no expert but it literally looked like she was just brimming over with food.

4. She stuck to the planner rigidly prior to this, she felt severe fullness but it was bearable. She pushed herself to eat for the rest of the day yesterday giving herself terrible stomach cramps. We had to stay up until 2.30am for them to pass as she was scared of being sick again in her sleep.

5. When the dietician formed a new 'reduced' planner she had not removed much at all. We discussed as a family and felt if we could remove one extra smoothie the planner may be doable. DD was more than happy to replace the calories lost by removing the smoothie with an extra spoon of nut butter on her breakfast and extra chia seeds on a later snack. If she really was adverse to gaining weight why would she willing want to increase her calorie intake when she had the offer of us removing?

6. I do believe that her weight loss began when her severe anxiety took away her appetite completely. The bit I find hard is why would she let her weight get so low (I feel wretched for not seeing the complete picture sooner).

7. Prior to our assessment last Friday, CAMHS agreed that they could see that DD's weight had plateaued (just at too low a weight obvs) and agreed that this showed that DD had been making her own best efforts to increase her calorie intake it just wasn't enough...

I am just so confused. I understand that I may be deluding myself. I do think DD has some kind of 'control' or regimented issues with food but can't describe or explain. All of her life she has been indecisive around food which leads me to believe that there may be something underlying or spiralled out of control and I do suspect there is more to her weight loss than just anxiety but I don't know what...

I am pretty sure that I have contradicted myself a million times and am making little sense right now but please don't sugar coat anything you might have to add!

Equally please don't feel any pressure to reply, this was more of a clearing out my mind session.

And to everyone else, if you are still reading, heartfelt thanks for your thoughts and messages, they really do mean a lot.

Ali x

Edited at 12:23 PM.
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Old 14 Sep 21, 09:07 PM  
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buryboy
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Originally Posted by alibeau View Post
Buryboy, thank you, I hope you know how much I appreciate your input...

I have hundreds of thoughts and questions whizzing around in my head this morning so I'm just going to just type them up as they arise... I just feel so conflicted...

I'm going to air them openly rather than by PM as I am open to hearing everyone's opinions on this...

1. I have read up on re-feeding syndrome and agree with your comment, however, hand on heart, I would struggle to eat the quantity of food on her planner.

BB - I will try to dig out what I can of what was on Emmas plan in the first few weeks of her stay in the Priory . Think itís in her journey-book

2. I do not believe that DD has ever made herself vomit. Am I deluded? I don't know. Is DD a fabulous liar, I don't know, I am now questioning everything I think about who I beleive my DD to be (this is heartbreaking for me) and the relationship we have (not down to you I should add)... I should also add that given the circumstances of DD1's death, vomiting is something that we would take extra 'care' around than most and we would all agree is something we would actively avoid, I could be deluded.

BB - You arenít deluded at all . Every anorexic is different . Emma has never made herself sick .

And of course not every anorexic is a born liar . Itís so hard to know either way . I just remember Emma saying at exactly the stage your DD is at now that she couldnít eat much because her stomach was full . I think In reality a mixture of part truth and part the fact that she just couldnít will herself to eat it .
I do think Emmaís possible autism tendencies lead her to thinking she can tell Ď little lies Ď and think we wonít notice . She just has Ď a lookí that says Ď liar Ď but it certainly wasnít always like that .
A few interesting responses below re anorexics lying . But donít get hung up on it . It doesnít mean that your DD is doing it or even that the illness is as well entrenched that itís even a thing in her world . Hopefully not

quora/Why-do-anorexics-lie


3. As you probably know DD has to be supervised after each meal and snack. So yesterday we were sat in the lounge and after her AM snack she said her tummy felt like a washing machine and that she might be sick. She tried to hold it in for quite some time but eventually vomited. The food she brought up looked as good as new, no nasty smell, I'm no expert but it literally looked like she was just brimming over with food.

BB Quite possibly . The thing I would take from that is that it certainly appears not to be an intentional vomiting . Which is a good sign

4. She stuck to the planner rigidly prior to this, she felt severe fullness but it was bearable. She pushed herself to eat for the rest of the day yesterday giving herself terrible stomach cramps. We had to stay up until 2.30am for them to pass as she was scared of being sick again in her sleep.

5. When the dietician formed a new 'reduced' planner she had not removed much at all. We discussed as a family and felt if we could remove one extra smoothie the planner may be doable. DD was more than happy to replace the calories lost by removing the smoothie with an extra spoon of nut butter on her breakfast and extra chia seeds on a later snack. If she really was adverse to gaining weight why would she willing want to increase her calorie intake when she had the offer of us removing?

BB - I think that is definitely something to take up with the dietician. I would have thought they would be ok with that so long as the calories are going in and that the variety of food / drink isnít being overly restricted

6. I do believe that her weight loss began when her severe anxiety took away her appetite completely. The bit I find hard is why would she let her weight get so low (I feel wretched for not seeing the complete picture sooner).

BB - The biggest challenge of eating disorders imho is that itís completely illogical . Even now 5-6 years on , Emma canít say why she canít just eat more ! Itís so frustrating . And will be equally if not more so frustrating for your DD.
Although itís not quite the same , why do larger people not just eat less to try to lose weight ? They know being large isnít good for them , but many simply canít manage to eat less.

Whatever you do , donít get hung up on Ď what I should have seení type self-questioning . It achieves nothing . Anorexics are notoriously good at hiding stuff

7. Prior to our assessment last Friday, CAMHS agreed that they could see that DD's weight had plateaued (just at too low a weight obvs) and agreed that this showed that DD had been making her own best efforts to increase her calorie intake it just wasn't enough...

BB - So do they have , and have they shared with you , a good number of weight readings over several weeks / months ? How kind of pattern does it show ? How much has she lost over what period of time ? Does it go up at all, if does it just keep going down albeit at different rates ?

I am just so confused. I understand that I may be deluding myself. I do think DD has some kind of 'control' or regimented issues with food but can't describe or explain. All of her life she has been indecisive around food which leads me to believe that there may be something underlying or spiralled out of control and I do suspect there is more to her weight loss than just anxiety but I don't know what...

I am pretty sure that I have contradicted myself a million times and am making little sense right now but please don't sugar coat anything you might have to add!

Equally please don't feel any pressure to reply, this was more of a clearing out my mind session.

And to everyone else, if you are still reading, heartfelt thanks for your thoughts and messages, they really do mean a lot.

Ali x
I have tried to give my thoughts above within your own quotes , I will add a bit more of my thoughts in another post in a bit
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Our 2014 west coast trip - pre-trip, small highs and lows , and photo book/storybook
Pre-trip reportsmall highs and lows
photobook/storybook
Our MOST ANNOYING trip to Tenerife February 2018 ( an homage to infamous dibb threads

Edited at 09:22 PM.
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Old 14 Sep 21, 10:19 PM  
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buryboy
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A few more thoughts .

Have you contacted Ďbeatí for support . beateatingdisorders.uk/

Also ask about local support groups where parents may meet to discuss the challenges they face

Try where you can to get other family involved . It helps to share the burden , may give you 2 a bit of Ď time off Ď and also avoids the issue we had of Emma not wanting family to know . We do didnít understand how important Ďcontrol Ď is for anorexics and allowed her to stop family visiting . The anorexia was in control when it needed to have that control taken away . But the family need to be equally as strong as you in supporting the plan ( not allowing not hitting the plan ) otherwise itís a bad idea.

Try to ensure your DD still keeps friendships. Our experience and that of others is that they lose their self confidence and shun their friends. Equally their friends may struggle to understand your DDs difficulties but they need to remain friends if possible and support through the journey .

I see you said you werenít sure she was anorexic . I think most peopleís stereotypical image of an anorexic is the person who wants to be as thin as a supermodel and sees themselves as being fat when they clearly arenít. But that isnít the case in many many anorexics , so the Ďlabelí isnít limited to that stereotype .

Your Ďcaseí is very unusual and I am sure you have explored the impact of not only Abbyís death but also the specific nature of it and the impact that would have on anyone close . It would be completely natural to not want to put something in ones mouth for fear of a repeat .

I canít quite remember the timescale and agr difference, but is DD2 now the same age as Abby ? Could that make the fear even worse ?

I am interested as to why the ED team think she is anorexic ? Is it purely weight / BMI based ? Or a number of signs ? ( not in any way saying she isnít )

I would be asking if there are targets for weight gain or weight stabilisation and what the consequences are likely to be if they canít be achieved.

Do you know if they intend to change the meal plan as time goes on ? The normal thing would be that as the body gets used to the Ďcurrentí plan , then the weight gain / stabilisation reduces , and hence the meal plan gets Ď uppedí to keep the progress going . These were the most challenging days for DD.

Have they explained the Ď guesstimated calorie intake DD has been having compared to what her plan incorporates ? Not suggesting they will tell her , but they may tell you as parents and it may help you understand ( if you follow up by asking ) why the increase seemingly is much more than you appear to believe is Ď fairí

As advised previously , the key is to remain friends with dd while explaining why you need to be firm and support the plan. Giving leeway can be a Ď winí for the anorexia that fuels the desire for more little wins . Small amounts of extra intake can have great impact on weight , but it obviously works the other way too .



Hope some of this helps . Just written as thoughts come into my head so sorry itís not structured very well .

Anorexia is a very complex thing that doesnít have easy solutions . What works for one wonít work for others so just try and see what approach gets the best results
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Our 2014 west coast trip - pre-trip, small highs and lows , and photo book/storybook
Pre-trip reportsmall highs and lows
photobook/storybook
Our MOST ANNOYING trip to Tenerife February 2018 ( an homage to infamous dibb threads

Edited at 11:14 PM.
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Old 14 Sep 21, 10:49 PM  
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alibeau
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Originally Posted by buryboy View Post
A few more thoughts .

Have you contacted Ďbeatí for support . beateatingdisorders.uk/

Also ask about local support groups where parents may meet to discuss the challenges they face

Try where you can to get other family involved . It helps to share the burden , may give you 2 a bit of Ď time off Ď and also avoids the issue we had of Emma not wanting family to know . We do didnít understand how important Ďcontrol Ď is for anorexics and allowed her to stop family visiting . The anorexia was in control when it needed to have that control taken away . But the family need to be equally as strong as you in supporting the plan ( not allowing not hitting the plan ) otherwise itís a bad idea.

Try to ensure your DD a still keeps friendships. Our experience and that of others is that they lose their self confidence and shun their friends. Equally their friends may struggle to understand your DDs difficulties but they need to remain friends if possible and support through the journey .

I see you said you werenít sure she was anorexic . I think most peopleís stereotypical image of an anorexic is the person who wants to be as thin as a supermodel and sees themselves as being fat when they clearly arenít. But that isnít the case in many many anorexics , so the Ďlabelí isnít limited to that stereotype .

Your Ďcaseí is very unusual and I am sure you have explored the impact of not only Abbyís death but also the specific nature of it and the impact that would have on anyone close . It would be completely natural to not want to put something in ones mouth for fear of a repeat .

I canít quite remember the timescale and agr difference, but is DD2 now the same age as Abby ? Could that make the fear even better worse ?

I am intrigued as to why the ED team think she is anorexic ? Is it purely weight / BMI based ? Or a number of signs ?

I would be asking if there are targets for weight gain or weight stabilisation and what the consequences are likely to be if they canít be achieved.

Do you know if they intend to change the meal plan as time goes on ? The normal thing would be that as the body gets used to the Ďcurrentí plan , then the weight gain / stabilisation reduces , and hence the meal plan gets Ď uppedí to keep the progress going . These were the most challenging days for DD.

Have they explained the Ď guesstimated calorie intake DD has been having compared to what her plan incorporates ? Not suggesting they will tell her , but they may tell you as parents and it may help you understand ( if you follow up by asking ) why the increase seemingly is much more than you appear to believe is Ď fairí

As advised previously , the key is to remain friends with dd while explaining why you need to be firm and support the plan. Giving leeway can be a Ď winí for the anorexia that fuels the desire for more little wins . Small amounts of extra intake can have great impact on weight , but it obviously works the other way too .



Hope some of this helps . Just written as thoughts come into my head so sorry itís not structured very well .

Anorexia is a very complex thing that doesnít have way solutions . What works for one wonít work for others so just try and see what approach gets the best results
Thanks so much BB.

A lot of info to take inÖ.

Iíll re read in the morning as lots to think aboutÖ..

Really do appreciate your help.

Ali x
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