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

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concerned62 Show full post »
concerned62
Sotired wrote:
Hi concerned 62,
I'm concerned too.how it feels to me reading your posts is that there are a lot of mixed messages coming from you.you want help but find it hard to accept it will come at a cost -your ds course and having to push for treatment.
You want to fight for your d to go to her course-you should be using that fight to get her into treatment.
You want assurances from providers-there are none.
You want your d to do this on her own-but she has proved over and over that she can't.
So really what would I want to fight for in your situation?
I would want to fight for a bed in a unit.i would put her course on hold.i would remind myself that just because I have become desensitised to how my child looks-no one else will.that in sending her to a course, i am setting my child up to fail.
Now I'm not coming to you from a place of great success myself.my d weighs 42.5kg.this is 10 kg more than your child and my d has poor memory, is constantly cold, can't focus for more than an hour or two before needing to rest/sleep.highly emotional days -a meeting,an outing-the rest of the afternoon is a write off.
No matter how well your d appears obs wise-and I would challenge that as with no overnight monitoring the hospital has no actual idea what your ds obs really are-it isn't realistic to do anything other than look after her health now.if she wants the course,awesome.but if she wants it,she needs to do the work for it-and her work is more than 'I want this',it has to be 'I want this so I have to do the work to get there'.
Otherwise you will end up picking her up in an ambulance.no one is going to check on your d that much.your d is critically ill.critically ill people have to be in a safe place-hospital,residential,eating six times a day every day.she actually has to prove that her want is more than words.
And you have to own your part in her recovery,or at least some weight restoration.you have to be the squeaky wheel.you have to ring the doctor.get her bloods done twice a week and a weekly obs check done at the doctor.you have to go with your d to a&e and get the orthostatic heart rate done and insist on overnight observation.that burden, the burden of love and responsibility falls to you to do.
You have to work alongside and for your d and it is hard and thankless work.it involves getting people's backs up, looking out for your d and saying that actually nope,you don't care about those other people that doctors always talk about-your only job is to fight for your d and that is what you are doing.and then you fight for what your d NEEDS.
NOT what she wants.
Her wants come later.dont fight what you read here in the replies-instead look at the truth of them.be absolutely realistic.you both have a part to play in this,so you need to each own your part and work together for wellness that then will lead to a successful career for your d.
Good luck,


Thank you Sotired. This has been very helpful. Sorry that I can't reply more fully, but do you think that we will have to wait a long time for d to get treatment? Both d and I are concerned that she will not be considered high priority and put on a waiting list for treatment.
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Sotired
Squeaky wheel chick.be the squeaky wheel.obs done and bloods done weekly in the meantime.referral straight to a&e if your dos obs are even slightly out of line.they don't automatically do orthostatic heart rate so you have to make sure that is done-they tried to tell us d was fine one time.h was taking my d in-I said did they do orthostatic -nope they hadn't.once they did they were shocked.assuming your d is a purger cause that's usually part of the deal so make sure the potassium is checked as again this isn't necessarily commonly done.my d has had three or four life threatening readings requiring potassium drips done overnight.that might be a good way to get your d in to hospital actually, as a reading of 3 or less means hospital admission straight away.if your d isn't agreeing to weekly bloods and obs check,then she simply can't cope with being at uni.you each have your bit to do and eating and wellness checks are hers.
I can't promise you anything regarding admission-I can only tell you that persistence and checking admission criteria that your d fits are crucial in the fight.if your hospital has a advocacy service,use it to get help.here we have the health and Disabilty commission so you can ring someone like them (I dont know what your service is called sorry, I'm on NZ)and get them to advocate for you.anyone I can use to help in this fight I have.so that's your next step-what resources are available to you and how do you use tbem to get what you need?
Good luck,
Sotired42
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Blommie
We cannot answer your questions about admission criteria as each team in the UK has their own guidlines. What I suggest is you read these to understand what they SHOULD be proving your daughter:
http://www.rcpsych.ac.uk/files/pdfversion/CR162.pdf
Look at page 15 for risk assessment and treatment
http://www.kcl.ac.uk/ioppn/depts/pm/research/eatingdisorders/resources/GUIDETOMEDICALRISKASSESSMENT.pdf

Also, call the team and ask them for a copy of their admission criteria (worth asking for even if they are rude) which will clarify what they need to see to make a case urgent. If you look at the Marizpan guidelines, your d BMI is HIGH RISK and so I would really push hard for help. You need to arm yourself with knowledge and then go to war for your d.

And lastly, SoTired is right, heart rates drop at night, my d's would go to 20 at night and they only found this when she was observed overnight. She was at a higher BMI than your d. The GP can send you for an ECG and she should be having one weekly at this point.

D officially diagnosed April 2014 at age 13 after being hospitalised on a medical ward due to severe restriction. Been refeeding at home, doing FBT through CAMHS. Living life moment by moment
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concerned62
Thanks all. Will try to get d's obs checked on a weekly basis. I should have more trouble with the doctors than d on this as she is fully compliant.

D is not and never had been a purger and I have given her no opportunity to purge, though thank you for weighing in on this. Also, her potassium was checked at hospital and is normal.

Apologies for the confusion re my question on waiting times. I wasn't asking how long we might have to wait for inpatient treatment!! I realise that could be very long indeed. What I was asking is whether d will be put on a waiting list before receiving OUTPATIENT treatment. At the moment, my main concern is getting her seen at all. I am terrified that we may have to wait weeks and weeks for an appointment with a dietitian. Is this a possibility?
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hyacinth
Frankly anything is a possibility, so it is your job to increase the odds of a favourable outcome. To any of us on this forum, it is clear that your D is high risk and requires urgent treatment. But ED services are understaffed, bureaucratic and it is the middle of the summer holiday season. As Sotired says, you have to be the squeaky wheel, because unfortunately that is how the system works. Making more noise works. And I would certainly not let them know that your D is "well enough" to go to university in October and be overseen by Cambridge ED service - why would they prioritise your D when she doesn't plan to still be in their services within a few weeks.
Don't expect miracles if you are relying on outpatient services. You might get the first appointment within a week or 2 - none of us know - but one appointment won't turn things round. You can implement what she needs right now at home - a steady increase in calories with 3 meals and 3 snacks a day. How many calories did your D take in yesterday and the day before? She may be compliant now, but you can assume that it will get much harder for her as her weight increases, otherwise she wouldn't be at such a low weight right now. Good luck.
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concerned62
A week or two... Ok, that's not ideal but it's not disastrous either. At this point, I will take anything we can get. Starting outpatient will be great as d has already turned things round. All she needs is a plan to give her direction and she will follow it. I have every faith in her.
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concerned62
Doitagain wrote:
Hi again - if you say which service you've been referred to someone might have detailed info although I understand why you might want to not post this info online.

Have you rung the service today yet? You need to ring them every day. You simply say " my D is complaining of ... Leg pains /arm pains/ headaches/dizziness - whatever it is - and I am very worried this morning - she is more unwell than yesterday ". Your D will NOT be telling you precisely how she feels so you will not be telling any lie here. I am simply giving you an opening gambit to give you confidence and "a reason" to call every single day until you get a date for assessment. It is Tuesday today, you have been told they meet on Wednesday - make sure they have an earful of Information from you before then. In the unit my D attended they could do an assessment in very urgent /high risk cases (your d's BMI is urgent/high risk under Marsipan criteria) within five days .. However the report is then done within two weeks. My D was taken on immediately - day of first appointment - we were told in A phone call and outpatient treatment started the next week.

But... She needed a higher level of care . I was there waving Marsipan in their face.. When she reached this awful critical weight I rang every single day with new information on how bad she was. My husband rang on alternate days. - I could not have it on my conscience that if anything had happened to her while we waited I had sat there "waiting" and not telling them everything.

You are obviously a clever woman and I know you can do this. but you need to PUSH very very hard. To be honest if you have not rung twice already today then you are probably not pushing hard enough! (You know what I mean I hope!). Have you read Marsipan ? Wave it and quote it ! Read NICE guidelines. You need to ring your GP today and ask (insist) that they see your daughter too. take her there today for a check - you need them supporting your push as well. Take her to A&E again tomorrow. You are coming to this "out of the blue" at a very very low weight - the official services are only hearing about your D last week - you need to build your case very quickly within the "system" . I hope you do t mind me saying all this - it is great that she is eating and has decided to do this herself at last. Good luck for this week to you both.


Thank you. I'm sorry for wanting to get what you have said completely clear. You say that, after Wednesday, she will definitely have an assessment within 5 days? But what report is this that takes 2 weeks to issue? Will they be unable to give her an appointment until after the report has been issued? We don't want to wait 2 weeks until treatment can begin.

It gives me hope that your d's treatment begun the week after her assessment. Was this because she was considered an urgent case? If so, would you mind telling me what the reason was for her being given priority? What was her bmi?
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concerned62
Doitagain wrote:
I wouldn't hold your breath on getting a dietician either. I do t think we ever saw one as an outpatient t. To be honest you don't really need one. You and she both understand calories well so you can put a plan together yourself. Don't forget the rule - "you know how to feed your child". You do need advice about refeeding syndrome though. Your D will be offered monitoring and therapy I would guess and if it is a good service you should both be offered family therapy . You could push for day patient - presumably she would agree to that? X

No dietitian? Were you with CAMHS or AMHS? We had a dietitian at CAMHS (as outpatient), but I appreciate that AMHS might be different. We were really counting on getting a meal plan. Do you mean to say that you were given no meal plan/guidance on nutrition or target weight and supervised weigh ins?
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Torie
Hi concerned - So sorry you and your d are in this difficult situation. 

In my nearly 2 1/2 years here on the forum, I've seen a good number of new members who want advice helping their ill child navigate the journey to university. Forum members then explain why they would NOT want their child attending university until at least 6 months weight restored. Sometimes the new member decides to forge ahead with having their child attend university, which of course is their prerogative as a parent. We always ask them to stay in touch and let us know how things are going.

I can't remember even ONE person coming back and saying, yep, it worked out for my child to begin attending university when at a low BMI. 

But others DO come back and say, oh no ... I need help because my child is not managing the AN / university combo.

We don't judge. We hope you will stay in touch, whatever you decide, whatever you do, whatever happens.

We will always be here for you, whether we agree with your course of action or not.

And of course, we always wish the best for you and your d. Perhaps your child will be the exception we haven't yet seen here on the forum. If so, please let us know. And if not, please let us know that, too, so we can help.

Wishing you and your d all the best. xx

-Torie


"We are angels of hope, of healing, and of light. Darkness flees from us." -YP 
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concerned62
Doitagain wrote:
In no particular order .. No we never saw a dietician with CAHMS but our experience with them was terrible - D lost 10 kg under their "care". we did get guidance later from inpatient when she came home on leave from IP. Correction, we did not get guidance, she did. I knew what she needed anyway.

I didnt say you would be seen within five days. I am saying that SOME services will do this. We were never with AMHS. We bypassed that stage as we also knew their waiting lists were huge and it was another terrible service. We went straight to an Eating Disorder Specialist Service - in order words they only treat eating disorders - it is where AMHS refer you too if they cannot cope , you are too ill to be treated by them because of low BMI etc. However, we were referred there byCAHMS - we refused AMHS and CAHMS told us that at this weight , had she been with AMHS, they would have been obliged to transfer to a higher care anyway. Don't know how much of that is correct.

She was weighed weekly at the new service plus bloods and ECGs. I wouldn't know what they told her about meal plans or her weight as she was 18 and they don't have to tell you. We were given family therapy quickly and she was given Individual therapy/ which started after about 4 weeks .

Her treatment started immediately because a BMI of 12 warrants it but also presumably because her bloods /ECG were not great. Remember that they are deemed "fine" even when they are way out of range . I saw my D's chart afterwards which spanned about 20 weeks and you could see them going up and down weekly different ones each time. You can see the week of admission as about half of them suddenly crashed/shot through the roof . This happens very suddenly - she was critical on admission.

When I talk specialist service I am talking people like The Maudesley, Vincent Square, Great Ormond Street etc.
Hope this helps.


I think I'm getting confused as to what you mean by a specialist service. The service who we have been referred to, who will be assessing d, is the South West London and St George's eating disorder service. It is a branch of AMHS, but it only treats eating disorders, so I assumed that it was a specialist service. Was I wrong? And can anyone who has had experience of this service say whether they are good or not?

I see. Your d had a lower bmi and bad bloods & ECG. My d has a bmi of 12.47 and her ECG, bloods etc are all normal. Presumably this means that our wait time will be longer. At what bmi did they decide that your d needed to be hospitalised?
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hyacinth
South West London and St George's eating disorder service is a specialist eating disorder service and it is very good by national standards (but still underresourced).
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concerned62
hyacinth wrote:
South West London and St George's eating disorder service is a specialist eating disorder service and it is very good by national standards (but still underresourced).

Great to hear, thanks. Have you had personal experience of them?
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concerned62
Doitagain wrote:
Hi concerned ! Have they called you and if not you should maybe ask your GP to chase. If your GP sees your D he can phone them /email also stressing urgency which will add additional pressure to your referral. I have everything crossed for you and your daughter that you get what you need ASAP. St George's sounds good -it was not an option for us as it is not our area x

Hi again. Nope, they haven't called yet as they have their meeting tomorrow at which they discuss new referrals. I've been too that we will be called with a date for her assessment after this. So, if we gave still not heard anything by Thursday afternoon, I will call them again. Here's hoping St George's is better than your team.

Also, I have a question about adult services. Will my d be allowed to discharge herself when we reaches a "technically" healthy weight (i.e. Bmi 18.5)? I fear she may do this.
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concerned62
Doitagain wrote:
Bmi 12 point something always warrants admission in my opinion. its about state too . How is your D feeling today ? I get angry on your behalf when I think about you even having to wait one day. Keep pushing, ring every day and keep asking questions here - this forum is incredible - it kept me going . Limit all physical activity for your D and take her temperature regularly. Rope in the GP too - you need a bit of a team while you wait . Best of luck today.


Her state is excellent, bizarrely enough... Except her being angry at the delay. She says she is ready to start treatment now, whatever it may consist of: inpatient, day patient, outpatient. She just wants to be well.

Thanks for the support. Will keep doing everything I can.
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concerned62
Also, I have a question about adult services. Will my d be allowed to discharge herself when we reaches a "technically" healthy weight (i.e. Bmi 18.5)? I fear she may do this.
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concerned62
Doitagain wrote:
Yes - she can discharge herself any time she likes as a voluntary patient. Don't worry about that at all now though - it helps I think to focus on the immediate goal and push hard for that. Please do call and speak to the GP too. You could have them lined up for Thursday if you don't get a quick appointment (I hope you do because you should so big fingers crossed). These waits are painful aren't they so reach out here for support for yourself.

I see. Hopefully she continues to think rationally. I have never been so proud of her. And the GP sounds like a good idea.
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concerned62
Just weighed d at home and she was 31.9kg on our scales. This is scary. They had BETTER CALL TODAY.
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concerned62
Still no phone call. Am starting to think that there won't be one until tomorrow. Looking at the info sheet we were given at the hospital, it turns out that the usual procedure is to invite patients to an assessment by sending a letter, rather than making a phone call. So, we might even have to wait for a letter.
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concerned62
I think they close at 5pm, so have given up hoping for a phone call at this point. I don't know what to do.
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Kali
Hi Concerned62,

So sorry that they have not called back. I agree with Toothfairy; don't wait for someone to call you; can you take her to the emergency room now? The response you are getting is appalling but you are in charge of getting your d the best possible help and it is up to you to be the squeaky wheel—and you can do it.

I'm not sure how it works where you live—the response you got at the last emergency room did not seem to offer immediate help and you d's weight and bmi really require an immediate response. Do you have the option to take her to a different hospital emergency room and say you do not feel safe taking her home until someone there helps, and ask for an emergency hospitalization to get her stabilized before admission to an ED specialist unit? Do not take no for an answer. 

Again, so sorry that you and your d. must go through this,

Kali
Food=Love
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K63
Hi concerned 62, this bmi is dangerously low and your d could collapse . The ed will not allow her to tell you how unwell she feels. I would be taking her to hospital and insisting she stays there and you will not bring her home until a specialist bed be ones available . She needs to be under medical care.
Daughter started restricting in February 2014, tried re feeding at home hospital admission 4 1/2 months weight restored started restricting post discharge, back on meal plan full supervision weight restored april 2016. Starting to hand back responsibility for meals it's scary. 
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IrishUp
Concerned62 - I am so sorry! How upsetting for everyone!

This is a very serious situation, and I am deeply worried for you and your D. I am particularly worried that given the severity of what you are reporting, your D's may be at serious risk right now.

On ATDT, our first concern is SAFTETY. We are a peer-to-peer support forum, and are explicitly NOT a substitute for expert clinical care on the ground. I urge you to take a copy of Prof. Treasure's Guide to Medical Risk Assessment (pdf at link below), and take your D to an A&E, and ensure that she is worked up as indicated. From what you report, her BMI is in the Alert range and she merits urgent medical assessment to ensure her physical safety. In your shoes I would be dogged and not allow anyone to brush you off. You can raise the specter of the most severe risks (sudden cardiac arrest being particularly worrying!) if you need to raise the staff's level of concern to an appropriate High Alert.

Under these serious circumstances, it is our policy to lock the thread. 

Please feel free to contact a moderator if you need further explanation or advice.

Our thoughts are very much with you.

http://www.kcl.ac.uk/ioppn/depts/pm/research/eatingdisorders/resources/GUIDETOMEDICALRISKASSESSMENT.pdf
IrishUp
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