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Faddywrite Show full post »
Faddywrite
Thanks for the encouragement Torie,

You are right Camhs just seem to depress me, although i am hoping that this specialist ed team psychologist may be different. I have to ring the paediatric team too to chase up my d's autism assessment progress, as i do think her way of seeing the world is related to her ed.

Yesterday she talked to me about why she hated me the day when I made her eat rice pudding and she said it wasn't because she was scared it was because she has a healthy eating plan she is following and that pudding did not fit into it that day. She said she can come off her plan for the odd treat day but can be very anxious afterword if she hasn't had enough fruit and veg. This is true, as I have seen her allow herself the very occasional small cake or a very sweet syrupy coffee at Costa because she has planned for it in her week.

She plans like this in other ways too and in all areas seems to need rules. Even with reading. Shes never been a great reader but recently decided to start doing it more because it will help her vocabulary. So she was sitting reading downstairs which never happens and started asking me whether she now has to read every time she is bored etc and started trying to get me to tell the rules! I just said there are no rules, just read when you want to. She finds this very hard to cope with, which is a very autistic way of thinking. I think this is maybe behind her developing an ed, it is very related to autism.

Thanks for your advice and help, I will carry on adding butter etc this week!
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ValentinaGermania
ALL ED patients LOVE rules. They have rules for nearly everything if you let them have. That is ED behaviour and yes, it is similiar to autism but in our case it all faded with WR.
Keep feeding. There is light at the end of the tunnel.
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mrh74
Hi Faddywrite, do you know what they were using to assess whether your daughter is underweight?  The reason I ask is that the NHS healthy weight calculator is VERY misleading and imo, dangerous.  Our GP told us to use it before my daughter was referred to the ED team.  It's online, you put in your child's age, weight and height, it calculates their BMI and tells you if they're overwieght, healthy weight or underweight based on averages for children of the same age.  The problem with it is that it only tells you that your child is underweight if they drop beneath the 1st centile!  I didn't do anything for a while because this app was telling me that my daughter was a healthy BMI for her age. 

The ED team takes the same data but their computerised tool gives you a weight for height percentage and a healthy range is considered to be 95% - 105%  - using the NHS app, my daughter wouldn't have been considered to be under-weight until she had dropped to below 70%.  If she had dropped that low, I'm sure she would have been hospitalised way before then.  She was very ill at 83%.

Hopefully the ED team you see will use the second tool but it might be worth asking what tool they're using to determine "healthy" weight.  Also, there are so many other factors determining health aside from BMI alone, such as blood pressure, regular periods, blood test results etc.


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Faddywrite
Hi yes the ed team may have used a different tool I think as initially they said my daughter's wright for height was 82% (they told me that was very low and that if they had considered her anorexic they would have possibly admitted her. But they didn't; because they decided she may be autistic.)
The more recent percentage was better by a few percentages around 86%, so just above their criteria for considering inpatient help. However her weight has dropped by half a kg this last couple of weeks, so I will be asking the gp nurse tomorrow to calculate weight for height for me. Her bmi is hovering around 17%.
For me what is more concerning is how thin she looks in her pyjamas. People say oh she looks okay, just slim, but they don't see her in pyjamas doing the little bit of exercise I allow for fear of her eating less.

But the amazing thing is that today she asked me how she gained 3 kg before and I just said by eating more, so she got two crumpets (she did this every day for a while) spread peanut butter on them and took them to eat after breakfast but on the way to school. I will encourage her to do this always now until we increase again. She is aware that losing weight will make her ill and she genuinely doesn't want to lose more, she just struggles with the thought of gaining a lot because of how it will make her look. I plan to add butter etc to all her meals to help boost her weight as I am so scared. But her eriods restarted three months ago and so far he still has them.
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ValentinaGermania
I hope they will take it serious tomorrow. Keep us updated. And do not go home without any advice about weight gain. That is not a question of diagnose. She is underweight and she needs to gain asap.
Perfect would be if you can get the team to telll your d that she must eat all that you serve. Ask for that (under 4 eyes).

Tina72
Keep feeding. There is light at the end of the tunnel.
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deenl
Hi Faddywhite,

I am just throwing this out as an idea. How about using your daughter's strengths? She seems to be very rule bound and open to messaging from figures of authority. Bear in mind the maxim 'First, do no harm' which is always a danger but it is perhaps possible that for this first phase a dietician or similar could help inform your daughter that the messaging that gets into the public sphere can be very confusing. She could give your daughter a meal plan that is designed to gain weight and include daily treats. She could also inform your daughter with authority that it is perfectly fine to, for example, eat birthday cake or treats on an outing without needing to restrict later. This professional would have to agree with you that the meal plan was a temporary step with the ultimate plan being to eliminate any anxiety and most rigidity around food choices. Of course, if no such professional exists, I would be inclined to tell my daughter that I was doing an online nutritional course and I now knew exactly what she needed. And no, the course warned that it was not a good idea for teens to be obsessing about nutrition - that was something for parents.

Two of the members of my family do not have strong hunger cues and so tend towards a more structured eating routine; one, our son, developed an ED but the other did not. However, they eat tend to eat the same thing for breakfast; eliminates analysis paralysis in the morning! A usual lunch of drink, roll of some sort and side of crips etc. The roll can have any and all sorts of fillings. And dinner can be anything. We eat 2 snacks (various) and a dessert (various) everyday. There is some level of predictability in the meals but also lots of variety. And, of course, the most vital of all - no anxiety with variety and if, for example, we are out and about and need to get something on the run. Again, I wonder if a phased and predictable approach would be more successful with your daughter.

Perhaps support for distress tolerance and lots of distraction would help your daughter cope with a plan such as this. Again, I am just throwing out ideas that you should feel free to discard if they do not seem to help.

Warm wishes,

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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Faddywrite
Hi and thank you so much for responding with your great ideas!

yes, when my daughter was first seen by the ed nurse, we were told she is possibly autistic, so they got the dietician to come in and spend half an hour with us. My daughter even asked the dietitican if she could give her a plan which would tell her exactly when and how often she could eat treat type food, as she could not cope with people telling her she can have them "occasionally" or £in moderation." The dietician refused and said she wouldn't because she felt my daughter would just get stuck on the pan and that she needed to have a variety of foods. The nurse said now that she had explained to my daughter that all foods are ok to eat my daughter may well change very quickly and start eating everything again. That was 9 months ago.

However the dietician did send us a sheet full of menu ideas that were balanced and all okay to eat. It is on our fridge and my daughter doesn't quite trust it, it includes things like puddings and she is mistrusting of the dietitican as she said my daughter could eat cake one day, ice cream the next cheesecake another day and be fine and healthy. 

I even took my daughter to the camhs drop in mental wellbeing centre where a lovely listener spent an hour answering her questions like "is it ok to eat cake and exactly how often?" I think the poor lady was a littl amused by the long list of questions. I tried to take my daughter for a hot chocolate afterwards but she was still anxious.

But yes I think it is a great idea to use my daughter's strengths. The ed nurse said she takes health advice very literally and that this is part of autism as well as rigid behaviour. I am very confused but will do anything that helps my daughter enjoy food again! I will ask to chat about this idea and also ask to see a dietician again.

I am trying to work from home (i am a writer) and it is hard to focus on my work because I just can't take my mind off this eating disorder!
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deenl
Faddywrite wrote:
But yes I think it is a great idea to use my daughter's strengths. The ed nurse said she takes health advice very literally and that this is part of autism as well as rigid behaviour. I am very confused but will do anything that helps my daughter enjoy food again! I will ask to chat about this idea and also ask to see a dietician again.


Our path was not straight forward so I would meet/email our doctor to co-ordinate all our plans without my son and we could be sure that all the adults were on the same page.

I don't think this approach would necessarily be the best for all patients but maybe for your daughter a basic meal plan that is similar to what she eats now, next week a few planned additions, the following week those additions plus a few new ones. 

I think some psychological support or some mama support in tolerating anxiety would help her. I liked the book Freeing your child from Anxiety  by Tamar Chansky.

Good Luck!

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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deenl
Hi again,

It would seem that discussion is not achieving the goal of helping your daughter to eat freely. I would hope that a dietician would give her a meal plan that differed every week (to avoid her getting stuck on a specific plan) and would say to your daughter with a warm smile that she went studied for 4 years and that level of knowledge cannot be condensed into a conversation of an hour and to trust that she knows what she is doing.

In your shoes I would restrict your daughter's internet access either by installing parental contols or by insisting that she use the internet in your presence. I would lay bets that she is obsessively double checking everything on there and it will not help the rumination.

Warm wishes,

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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Faddywrite
Hi yes I know she checks things on the internet so am discussing how and what to bkock tonight with my hubby. I just had a call from the ed keyworker she will see my daughter in two and a half weeks after the psycholgist has written up her notes and they will discusz with us the plan of action.
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mrh74
It's great that you're finally getting more help.  So many things that you've written are identical to my daughter's thoughts and behaviours!  It's encouraging that your daughter doesn't want to lose weight, things turned a corner for us when my daughter got to that stage - although the anxiety about not gaining weight can still torture them. 

My daughter was very anxious and rule driven for years before the ED was diagnosed and we did at one point receive a diagnosis of ASD from a private psychiatrist.  Interestingly, the ED team have taken a different view and said that the rigidity and rule following wasn't ASD but a manifestation of her anxiety which at that point had settled on extreme fear of weight gain.  I was skeptical because it had been going on for years but two years of treatment from the ED team later, I have to say it looks as though they were right, which is just brilliant!  Now that she is at a healthy weight and has been maintaining it for a while she is beginning to develop the confidence to eat more intuitively and is beginning to see that she won't continue to gain and gain.  She says it is getting a bit easier each month, she just needs time to see for herself that the advice she is receiving is right.  They asked her about her general levels of anxiety yesterday (they had agreed to tackle it if it was still present when the ED was receding) and she said that she is no longer anywhere near as worried about things in general as she used to be!  

I'm not saying that your daughter is the same but thought it might be useful to hear another story which has some similarities.  Also, it would be a shame if you couldn't access ED therapy because of the alternative diagnosis, so I would keep questioning them about it - even if it's correct, FBT would surely still help?  It's a certain fact that being underweight would probably make any other co-morbidities worse!

Take care xx
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deenl
Here is a recent thread that discussed Anorexia and possible autism diagnosis.

Warm wishes

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.
Quote
Faddywrite
mrh74 wrote:
It's great that you're finally getting more help.  So many things that you've written are identical to my daughter's thoughts and behaviours!  It's encouraging that your daughter doesn't want to lose weight, things turned a corner for us when my daughter got to that stage - although the anxiety about not gaining weight can still torture them. 

My daughter was very anxious and rule driven for years before the ED was diagnosed and we did at one point receive a diagnosis of ASD from a private psychiatrist.  Interestingly, the ED team have taken a different view and said that the rigidity and rule following wasn't ASD but a manifestation of her anxiety which at that point had settled on extreme fear of weight gain. I was skeptical because it had been going on for years but two years of treatment from the ED team later, I have to say it looks as though they were right, which is just brilliant!  Now that she is at a healthy weight and has been maintaining it for a while she is beginning to develop the confidence to eat more intuitively and is beginning to see that she won't continue to gain and gain.  She says it is getting a bit easier each month, she just needs time to see for herself that the advice she is receiving is right.  They asked her about her general levels of anxiety yesterday (they had agreed to tackle it if it was still present when the ED was receding) and she said that she is no longer anywhere near as worried about things in general as she used to be!  

I'm not saying that your daughter is the same but thought it might be useful to hear another story which has some similarities.  Also, it would be a shame if you couldn't access ED therapy because of the alternative diagnosis, so I would keep questioning them about it - even if it's correct, FBT would surely still help?  It's a certain fact that being underweight would probably make any other co-morbidities worse!

Take care xx


Hi and thanks so much for sharing your insights! They are very encouraging for me! I have fought for nine months now for help as I can see my daughter's anxiety isn't going anywhere and I felt like the professionals just weren't listening! I'm hoping now they will help her.

No I'm not convinced about the autism suggestion really, as there were no issues before this ED took hold. I guess looking back my daughter was sensitive to noise as a child and she did and flap and walk on tip toes when very young, but it's only since the  ed took hold that she has become so much more socially anxious, rigid and black and white/into rules so much. However she has always been v anxious about becoming ill.

Really, the idea that she has asd came from a ten minute read of my daughter's initial camhs form which the nurse said showed that she doesn't have dysmorphia and wants to gain weight so can't have AN. The thing is, she might say she wants to gain weight but she is so anxious about what that means and will look like that she can't eat the things that will help her gain. She only wants to eat healthy" food to gain which is why it is so slow. I have recently started to cook more calorific recipes more often and she begs me not to but she will eat them with encouragement (but not every day). She then tries to walk the dog more etc to work off the calories (she used to do lots of press ups but we got her to stop that.)
Also, I see her checking that she still feels as slim every day by smoothing her hands over her shape. And she mentions how her tummy looks to me often, panicking if she thinks it is getting rounder! So while she doesn't want to lose weight, she struggles with the reality of gaining so much that it is like a battle for her.

Anyway, I hope the ed team will have some good ideas to help us and I'm so glad yur daughter is so much better.

xxx


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ValentinaGermania
1. There are a lot of AN patients that do not show any body dismorphia, especially young ones.
2. All the behaviour your d shows IS body dismorphia in my eyes because she is afraid of getting fat.
3. Normally autism is diagnosed very much earlier and if you say she did not show that behaviour pre ED so this is very probably an ED symptom and no autism at all.

I really hope you get help there today.
Tina72
Keep feeding. There is light at the end of the tunnel.
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Torie
Faddywrite wrote:
She only wants to eat healthy" food to gain which is why it is so slow. I have recently started to cook more calorific recipes more often and she begs me not to but she will eat them with encouragement (but not every day). 


It is great that you are getting your d to eat more caloric recipes sometimes.  Yay, you!  (And yay, her!)  I wonder how we can help you speed up the process a little so that you can serve more caloric meals every day.  Many here (raises hand) find that when our kids get to a proper weight, things are MUCH easier for them (and the rest of the family).  Actually, I think everyone here whose kid has gotten to and stayed at a proper weight (for them) has seen a tremendous drop off in tortured thinking.  In the end, it is a kindness to push them through as quickly as possible.

As I said before, my d experienced the weight loss when she was 14, almost 15, which I think is your d's age.  When it came time for her to head off to university, I was so glad (SO GLAD) she had been at a proper weight (for her) for several years - even so, it was really scary to think of her off on her own away from my watchful eye.  The time goes by so fast.

Did you feed her the pudding again?  

Keep swimming. xx

-Torie
"We are angels of hope, of healing, and of light. Darkness flees from us." -YP 
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Faddywrite
Hi Torie,

Thank for the encouragement. I haven't done pudding because we did two calorific cheesy dinners that she begged me not to give her and she ate them. Ad tonight I am making pitta bread pizzas which have cheese and there is a bit of sugar in the pitta breads, which is why she refused to eat them last time!. . We have to go to the nurse at our gp's surgery later to get her weight and blood pressure taken. Se had lost half a kg over the last week or so so my daughter has been really good eating extra toast and peanut butter and crumpets before school to try to gain back the lost weight. 

But next on the list is a different pudding, maybe ice cream.

Funnily enough, yesterday my daughter told me that she felt she is thinking a lot more clearly and is better at grasping abstract ideas at school compared to when she was more underweight at 40 kg. She said she feels like she stopped growing and her mind stopped maturing when she was worse. I don't know whether she has read this somewhere but I encouraged her and said as she gains weight her brain will recover fully so she can think completely normally again and it will get easier.
xx


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