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CED123 Show full post »
tina72
CED123 wrote:
tina - (don't know how to quote, sorry). her lunch is not currently supervised in school. 


That would be important if you can get that supervised because normally food that you do not SEE that she ate is not eaten.
Some ask the school nurse or a teacher to supervise lunch and report what she has eaten. In some cases it was enough to TELL them it is supervised and check that now and then.
Some took the kids home for lunch and brought them back afterwards (we did that). That is a good incentive because they eat faster and finish earlier when you say "you can go back to school as soon as you have finished lunch".
Some let them have what they have for lunch and do not count it at all and fill all the calories in the rest of the meals. But that is not best solution in my eyes as they get low blood sugar when they do not eat lunch and that increases ED thoughts. Better would be to make them eat regularly.

If you want to reply with quote you go to the post you want to quote and click on the 2 ,, on the right base. Then another window opens and you can reply with quote. Do not ask how long it took for me to find out how all these things work here...🙂
Keep feeding. There is light at the end of the tunnel.
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Mamaroo
CED123 wrote:
and do I do both fights in one - ie taking control and changing foods completely? or take control but mainly stick to her safe foods, and re intro other foods later? 
I know from past weeks that I have more chance of adding belvita/shakes (ie increasing the foods she does eat) than getting her to eat a muffin for example.


We took control first and refed her on safe foods, which in her case was ensures only, we slowly increased the ensures until she was having 6 a day and then added snacks. Later on the ensures were swapped with food. It is going to be very hard on her when you take control, but soon, if you don't waiver, she will accept it. We did the same as Tina, serving the whole family magic plate and I still do, makes it soooooo much easier. Later on you can add fear food, one at a time until she's eating what she was before.

Sending you lots of hugs 🤗🤗🤗🤗🤗
D became obsessed with exercise at age 9 and started eating 'healthy' at age 9.5. Restricting couple of months later. IP for 2 weeks at age 10. Slowly refed for months on Ensures alone, followed by swap over with food at a snails pace. WR after a year at age 11 in March 2017. View my recipes on my YouTube channel: https://www.youtube.com/channel/UCKLW6A6sDO3ZDq8npNm8_ww
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CED123
Thank you all again for the support.  I am coming up with a plan to implement after our holiday and will probably be back when it all kicks off.  

I still cant do quotes so haven't answered every Q but have taken info on board.  one thing re our therapist "He should know that it is evidence based now that fast progress and fast weight gain is best" - when I raised the research into early gain meaning better outcome, he said don't believe everything you read about anorexia! which is why I am trying to change therapists.
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scaredmom
It is ok if you don't quote anyone specifically, 
You can just name those that you are responding to, if you wish.

Changing therapists sound great! This one needs to get some real Education!!
All the best.
XXX
When within yourself you find the road, the right road will open.  (Dejan Stojanovic)

Food+more food+time+love+good professional help+ATDT+no exercise+ state not just weight+/- the "right" medicine= healing---> recovery(--->life without ED)
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CED123
Jojo - i feel for you and your daughter. That sounds extremely tough and I can't comprehend how you are coping. 
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Ellesmum
Nobody is a failure- it’s the hardest thing ever. Truly if you read the first couple of pages of my thread you’ll see the despair I felt, the fear and feeling I’d never be able to do this.  
Ellesmum
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tina72
CED123 wrote:
one thing re our therapist "He should know that it is evidence based now that fast progress and fast weight gain is best" - when I raised the research into early gain meaning better outcome, he said don't believe everything you read about anorexia! which is why I am trying to change therapists.


That is totally right, you should not believe everything that you read about anorexia as there is a lot of old fashioned and outdated advise BUT he should know the recent scientific literature and all modern studies on that and the evidence based studies are nothing you need to discuss about.
I would change that therapist, too, he does not seem up to date.
Keep feeding. There is light at the end of the tunnel.
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Ellesmum
tina72 wrote:


That is totally right, you should not believe everything that you read about anorexia as there is a lot of old fashioned and outdated advise BUT he should not the recent scientific literature and all modern studies on that and the evidence based studies are nothing you need to discuss about.
I would change that therapist, too, he does not seem up to date.



Yes, our team wanted to go for a slow approach for a better long term outcome, my feeling is that once they’ve done their initial training that’s it forever pretty much. The services are very stretched and the training is from a 30 year old book. 
Im certain that if I were to follow their advice d would end up in long term ‘revolving doors’ treatment.  Never fully recovered.  This really must change, it’s just not good enough.  
Ellesmum
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tina72
Nobody would think about treating cancer that way. They would not tell you "you are not sick enough, come back when your tumor is double size". They would not tell you "we just take a part of it away as it might be too stressful to take it out as a whole". They would not say "we do only slow chemotherapy and accept that it is growing bigger in that time". They would do the all or nothing battle and that is needed here too.
The longer they stay sick the longer it takes to recover and the longer they need to suffer.
Keep feeding. There is light at the end of the tunnel.
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tina72
Jojo2271 wrote:
I have failed spectacularly at fbt... 11days after first cahms appt and being sent home with meal plan and told to take control... I am sat by my d hospital bed while she is tube fed.


I just wanted to say that you did not fail with FBT and that it was not your fault or that FBT does not work but it is very hard to get through these first weeks and to find out what works and what not. That is no failure but experience. FBT is learning by doing and by try and error. Most parents needed weeks to find out how to feed their kids, I know nobody that got that from day 1.
Keep feeding. There is light at the end of the tunnel.
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deenl
Jojo2271 wrote:
CED123 don't feel useless. I have failed spectacularly at fbt... 11days after first cahms appt and being sent home with meal plan and told to take control... I am sat by my d hospital bed while she is tube fed.
I am in awe of all on here who have done the re feeding... My d just literally stopped any food and then stopped drinking.
I do wonder how others can do it and I can't.  


All of us have failed spectacularly at re-feeding in the beginning, nobody knows how to refeed intuitively.

In fact, the professionals failed spectacularly at feeding my son - he went from bMI 13 to 11 IP! When we removed him from their care we really struggled to feed him. We managed to stabilise him for 3 months, trying all the time to get some momentum going. Eentually we managed regular meals but the amounts and nutrition were not sufficient. We arranged for him to go to the local hospital (he ended up in there for a month) and I figured out how to refeed him while he was in there. We had the backup of heart monitoring and a medical atmosphere which allowed him to eat. When he got out I was able to continue the positive trend but I had to continually adapt and learn new skills as I went along.

Another factor is that this illness fall along a spectrum. All cases are very difficult to treat but some are even more tricky. There may be preexisting co-morbids that make everything more complicated.

Yet another factor are all the family circumstances; our kids did not pick up thier anxious or black/white thinking from nowhere, many parents are trying to deal with their own anxiety, depression or other mental health issues. There may be illness or other kids who need care and attention. Parents may need to continue to work. There may or may not be extended family. All parents have different strengths and weaknesses. Just some of the many influencing factors in our environment.

And finally, some professional help is better than others.

I hope that you can see that so many ingredients go into the pot that it is impossible for you to be to blame if FBT did not work out at the first go. As prescribed in the manual, it doesn't work for 30%-50% of families. Most families here tweek the principles to suit their own circumstances.

The 'failure' in the early days is not wasted. In my case, all that trial and error before hospital meant that I knew lots of things that didn't work. So when he came out of hospital I was able to keep the momentum going.

Wishing you all continued strength and courage,

D
2015 12yo son restricting but no body image issues, no fat phobia; lost weight IP! Oct 2015 home, stable but no progress. Medical hosp to kick start recovery Feb 2016. Slowly and cautiously gaining weight at home and seeing signs of our real kid.

May 2017 Hovering around WR. Mood great, mostly. Building up hour by hour at school after 18 months at home. Summer 2017 Happy, first trip away in years, food variety, begin socialising. Sept 2017, back to school FT first time in 2 years. [thumb] 2018 growing so fast hard to keep pace with weight
  • Swedish proverb: Love me when I least deserve it because that's when I need it most.
  • We are what we repeatedly do. Excellence Recovery, then, is not an act but a habit. Aristotle.
  • If the plan doesn't work, change the plan but never the goal.
  • We cannot control the wind but we can direct the sail.
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CED123
thank you all again - this is all useful and helpful.

Quick stupid Q: if I do magic plates, does that apply to all snacks too?  I've arranged to leave work early to be home after school but my D still beats me home some days as I have to pick up my younger son on the way.  she is good (so far) at having her shake and crumpet and is usually eating when I get home - do I need to insist that she waits for me? I'm guessing the answer is yes.
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CED123
deenl wrote:


We managed to stabilise him for 3 months, trying all the time to get some momentum going. Eentually we managed regular meals but the amounts and nutrition were not sufficient.
D


I feel that is where we have been at - except we were lucky in that our D hadn't dropped meals so that bit has been easier, but maybe also fooled us into thinking it wasn't so bad/would be easy.  I'm not sure I've learnt any tools in the last 3 months but have learnt (with help from here) that we will still have to do it the hard way. Just still trying to gird myself for that battle.
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Foodsupport_AUS
Yes you are right, you prepare the shake and crumpet.

It is possible for example if she is preparing it she is not preparing how you would. Loads of butter on the crumpet for example, watering down milk. 

One thing my D did early on was she would agree to have a glass of juice. The thing is the juice seemed to last for every, then I realised she was adding water to it and making up the volume, she also watered down soup and milk. 

My D is incredibly honest. Her ED made her very dishonest.
D diagnosed restrictive AN June 2010 age 13.5. Weight restored July 2012. Relapse and now clawing our way back. Treatment: multiple hospitalisations and individual and family therapy.
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tina72
CED123 wrote:

Quick stupid Q: if I do magic plates, does that apply to all snacks too?  I've arranged to leave work early to be home after school but my D still beats me home some days as I have to pick up my younger son on the way.  she is good (so far) at having her shake and crumpet and is usually eating when I get home - do I need to insist that she waits for me? I'm guessing the answer is yes.


First: there are NO STUPID QUESTIONS here 😉
Answer is like you expected: it does apply for ALL food going in. She might be still eating when you come home but you do not know what and how much. She can plate herself under your eyes if she is more compliant with that but you choose what and how much. You do not know wether she poured have of the shake and filled it with water and hid parts of the crumpet.

As foodsupport said, my d was also incredibly honest (she is really a very bad liar) and she did try to trick me out (or better say ED did make her do that). Do not trust food that you have not seen that it has been eaten...
Keep feeding. There is light at the end of the tunnel.
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CED123
Of course there is no butter on the crumpet currently, but at least it's a giant crumpet. Will build up butter when I take over.
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mommiful
Quote:
school is actually good for her I think - it's a distraction (she's very academic).  she is usually almost normal after school for a little while and weekends are much worse.


You can use school as leverage by not letting her go to school until she has finished her breakfast--which you have prepared for her. This was what got my D completing breakfasts when she was in 7th grade. I started by talking with the school nurse and guidance counselor, alerting them that she may be late some days, so we would not have to call in each time that happened (which made D very upset, delaying things further). The school decided these would be treated as medical absences, so no consequences for her at school. I think this worked for a bit, but she pretty quickly got over the embarrassment of coming in late and was very late almost every day. So, I asked the school to treat her tardies as unexcused. This meant she would get called in to the principal's office, and after a certain number of tardies she would get after-school detention (with her name called over the public address system as needing to go to detention), and potentially a visit from a truant officer. This is what finally got her to eat breakfast.

Homework can also be used for leverage: no doing homework until she has had afternoon snack. School books get put away (I locked them in the car) when it's time for dinner and again when it's time for bedtime snack. Many families do something like this with phones; my D didn't care about losing access to her phone, but being able to do her homework meant a lot to her.

Of course, she felt we were being evil for interfering with her schoolwork. We just kept telling her that her health comes first.
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scaredmom
mommiful has good point there. 
My D too loves school and she knew if she did not eat well then she would stay at home. It was a great motivational tool. My D did throw food away at school and confessed to me, otherwise I would not have known. The plan was then to keep her home until she could eat everything. It was only 2 days and I moved the smoothies she had a school to after school so I could supervise better. 
When within yourself you find the road, the right road will open.  (Dejan Stojanovic)

Food+more food+time+love+good professional help+ATDT+no exercise+ state not just weight+/- the "right" medicine= healing---> recovery(--->life without ED)
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scaredmom
CED123 wrote:
 I am coming up with a plan to implement after our holiday and will probably be back when it all kicks off.  



Just a question: Are you going on holidays? Some have found that holidays are best after you have tackled fear foods and restaurants first. 
I am not sure what that means, sorry.
We took a 4 day holiday to a cottage 4 months after diagnosis and I did cook for her a bit ie breakfast and we did safe foods at the restaurants. It was a nice change in some ways. We took a boat cruise, but I was on pins and needles a lot of the time making sure she would eat well. Overall it was not a disaster.
Then after 5 months after diagnosis we went to the Caribbean and that was nice. We had our own kitchen there too and could make snacks. Her meals were in the restaurants. Although she chose between only two dishes for lunch and supper every day, she did eat well. But we had done restaurants and bit of take our a few times before we went.

If you have a plan to take control, I would suggest the earlier you start the better- even if before this holiday.
XXX
When within yourself you find the road, the right road will open.  (Dejan Stojanovic)

Food+more food+time+love+good professional help+ATDT+no exercise+ state not just weight+/- the "right" medicine= healing---> recovery(--->life without ED)
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CED123
Unfortunately we had 4 days in Paris booked from last year, before we realised the extent of our problems (the one year I'm actually organised...).  We aren't even self catering - we're in a hotel. It is going to be hell and I just want to get through it - it's not going to be the place to kick start anything. We have thought about not going but that will be equally hellish and perhaps at least this way there will be some realisation of how it is impacting her life (or maybe not...). If we didn't have other children who are looking forward to going, then we probably would just cancel.
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tina72
Maybe it is worth a try to get her to accept magic plate in that way. In the hotel the food might be plated and if not you could ask for that in the kitchen when you arrive. You could also talk to the cook and make him add butter and cream to your ds meal. Try to eat 3 meals and 2 snacks and if she refuses to eat take some ensure with you for emergency case.
Keep feeding. There is light at the end of the tunnel.
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scaredmom
I know of some families who looked at the menus of a few  restaurants on line prior to the vacation. Then they picked a few meals they knew the child would eat. This was done without the child’s input. That way the parent ensures that the nutritional needs of the child would be met when they traveled.
I took clif bars and granola bars with me when we traveled to a different country. So when in a pinch, d would have something ‘ comfortable’ and safe and I knew she could do it.
Liquids  may be prohibited and if the bottles break in your suitcase, well that would be messy, so pack ‘solid’ foods if you take any.


XXX
When within yourself you find the road, the right road will open.  (Dejan Stojanovic)

Food+more food+time+love+good professional help+ATDT+no exercise+ state not just weight+/- the "right" medicine= healing---> recovery(--->life without ED)
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Ellesmum
Yes, even now at our stage I wouldn’t travel without a few cereal bars in my luggage, it’s just a safety net. I still keep glucose tablets with me too out of habit, back in the dark days they would quickly avert a crisis of blood sugar dropping (this would often look like a panic attack) then I could get proper food in her. 
Ellesmum
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Ronson
Where are you staying in Paris ? Is it a Disney break ? We stayed at explorers last year and we did a good buffet breakfast. D plated herself and we advised what to plate. I took loads of safe snacks in my suitcase for her to have when we were out and about and also for supper etc in the hotel room. We had some difficulties if I’m honest.  Things had been going ok but we had a few issues on holiday.  Like you if we didn’t have younger siblings going then I may have cancelled.  We took out extra travel insurance too specifically for d.  It was around £40 for the 4 days but it gave me some peace of mind, just in case she completely refused or she got unwell in some other way and they blamed it on the Ed.  
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CED123
Staying in centre, not disney, but there is a buffet breakfast, we've looked at menus and I'm taking a suitcase full of ensure. Thankfully not flying!
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