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tammy

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Reply with quote  #1 
Looking for some advice on 8yr old son. Our S was referred to CAMHS with a restrictive eating disorder in August. He had dropped from 91st centile to 75th. We were lucky to catch him really early. We did not get access to FBT for first few months. We started FBT principles and re feeding on our own first using resources such as Eva Musby's book. He is now 105 weight for height and we are continuing to push calories to get him back to 91st centile. His height is still following original growth curve and his weight is almost there.
We have gone through lots of extreme distress and anxiousness with self loathing, hurting himself and others and severe temper tantrums. We had to watch him like a hawk and he was always needing distracted due to distress.
He is definitely more settled in general but we seem to go from one problem to another. He still has fear over portion sizes and we are still stuck with packing as much food into a small plate as possible. That said he has a range of foods he will eat and we are getting about 2500 calories in per day. The lucky thing is that he drinks pints of full fat milk and yoghurt drinks. He has started trying fear foods and has recently started eating sandwiches and rolls again which was a big step.
We don't know whether to tackle the small plate thing incase he refuses to eat again and we are back at square one. Or do we continue with small plate as getting calories in and he is tackling some fear foods?
We seem to go from one issue to the next, from trying to reduce portion sizes, to having tantrums and refusing to go to school if it rains as he won't get out to play, to obsessing about getting up early, wanting to go out and play at 7am in middle of winter to only wanting to wear skin tight clothes. We seem to get rid of one issue and another pops up.
He is generally happier and more content but seems to think he has to be doing a certain amount of exercise to warrant eating. This is where the getting up early, worrying about getting out to play etc come from. We have stopped the attempts of exercise in the early morning and are dealing with the distress of that just now. We would like some advice in breaking the link between exercise and eating. That said he is not excessively exercising it is more his thought process that is the problem we would also value opinions on the rigid thinking and new problems keeping popping up.
Thanks in advance
tina72

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Reply with quote  #2 
Hi tammy,
a very warm welcome from Germany and sorry that you had to wait so long for an answer.
First: I am cheering you on the weight gain and the refeeding! Congratulations! You have done an amazing job with that.
It takes time and as he is only 8 and still growing you will see ED behaviour for a long time. That is not nice to say, but that is reality. He will grow and than need another weight gain and so on. So keep refeeding as much as possible so you can keep him on a high percentile. Then you will get not so much set back when he is growing.
My d was not growing any more so we did not have this problem but I know there are a lot of parents with such young kids here and I am sure you will get some advice about that soon.

You might need to challenge fear food and bigger portions to get that. We did it that way that we added one fear food each week, but there are also parents who add as much fear food as soon as possible. You might be able to serve bigger portions with a trick: buy plates and bowls and glasses of the same brand in different sizes. Just a few cm bigger he will not see with his eyes and the portion gets bigger with that. Serve noodles etc. in a soup plate. That is deeper and the portion gets bigger (still looking the same). Put the muesli amount in a slightly bigger bowl. It will still look small but be a bigger portion. If he accepted that, go to the next size.

He seems to search for something to warrent eating. As he is very young, try to give him some other reward. Think about a point system. A complete meal is 3 points for example, and when he has got 10 points or 20 something nice happens or he gets a sticker or some money or something he is interested in as a hobby. Don´t set the target too high. Incentives must be realistic and near by. Some here spend a lot of money on computer games or other things, but it is worth it. The incentive should not be anything with exercise or movement.

Ask whatever you need, there is (normally [wink]) every time somebody who answers you.
Tina72
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Reply with quote  #3 
Welcome to the forum. Sorry that you have had to find your way here. You have done amazingly well for 4 months to get your son well up close to his previous curve and continuing to keep going. You seem to have a great handle on things already. This is tough and slow going. There is no right way to do this, yes he will need to lose that fear of portions, and yes he also needs to broaden his foods. He seems to be starting to do things one step at a time. Perhaps one of the things could be instead of a fear food, consider a fear portion? Changing plate sizes/ cups should just be considered a challenge too. Keep working at it. Some people find it takes a number of months at weight restoration before the true fog starts to lift. (Sorry it can't be faster).
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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.
Torie

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Reply with quote  #4 
Hi Tammy - It sounds like you are doing a great job refeeding your son!!  Such a traumatic experience for all involved, and one that is not understood by folks who haven't gone through it.

Quote:
Originally Posted by tammy
We would like some advice in breaking the link between exercise and eating.


You can't really change the way he thinks, other than keeping on keeping on with the refeeding.  (It takes a long time for brain healing.)  But you CAN change what he does.  Many here have had to put a stop to exercise - no sports, no gym, no running at recess, no opportunity to plank or do star jumps in the bathroom.  Boys and younger sufferers seem to have more issues with exercise, I think.  I remember Mamabear's 8 year old d was secretly exercising in her closet in the middle of the night.  A lot of people have needed to sleep in the same room with their ED-kid to minimize the opportunities for exercise, self-harm, etc.  Bathroom privacy sometimes also needs to be sacrificed. 

I wonder why he wants to wear tight clothes.  Do you think it's because he wants to stay small and doesn't want the bigger size?  If clothing size is an issue, it might help to buy several sizes of the identical item for him to try on at home, and then start the trying on session with the largest of the sizes.  when you figure out which size is right for now, cut out the tags from that one, and also buy a copy of the same item in the next-larger size.  That way he won't have to know when he has outgrown the item.

Sorry for the difficulty in changing plate size.  I'm trying to remember who it was whose young d insisted on only drinking out of shot glasses.  It is up to you if you want to risk the temporary increase in opposition by increasing the plate size right away.  Is he able to eat in restaurants or at other people's houses?  That would give him some practice with larger plates.  Some here have found that ED-kid behaves better when other people are around, so maybe consider inviting friends or relatives often during the transition.  I wonder if you could string together a series of larger-plate situations, and lose the small plates you have sometime during that.  I learned here that "normal" is a great word for our kids.  (They twist "healthy" around to mean "fat.")  You might mention that it's normal for second graders to eat from full size plates so that is what you will be doing.

Best of luck and please keep us posted.  xx

-Torie

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

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Reply with quote  #5 
Hi Tammy,
You are doing a great job.  Yes Torie, that was Meadow's D that would only drink out of shot glasses.
Tammy, were you able to figure out the email system to contact Meadow, as per her message on her thread?

Tammy, I advise you to add as much cream and butter as possible where you can. I would interupt and stop all exercise personally, and yes, many of our poor kids secretly exercise in bed or through the night...So supervision is often required there.

It would be worth reading through Mamabear's threads asw well as Meadow's , as there is really good information in them.

This is  a good article from Dr Julie O'Toole at Kartini.
https://www.kartiniclinic.com/blog/post/very-early-onset-anorexia-nervosa/

__________________
Son,DX with AN, (purging type) in 2015 ,had 4 months immediate inpatient,then FBT at home since. He is now in strong recovery,  and Living life to the full, like a "normal"[biggrin] teen. This is with thanks to ATDT. Hoping to get him into full recovery and remission one day at a time. Getting him to a much higher weight, and with a much higher calorie plan than his clinicians gave him as a target, was instrumental to getting him to the strong recovery that he is in now. Food is the medicine.
scaredmom

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Reply with quote  #6 
Tammy,
My d was very similar to your s. Once one challenge was taken care of another popped up that was just as hard. We just took it as it came.
You have done so well in such a short time.
We had issues with standing all the time. She would not sit and found ways to stand all the time. She tried not to watch tv saying too much screen time made a person less intelligent!! Well we started requiring her to sit down usually with her dad to watch a video foe half hour. Then after a few days I told her it would be one hour the next day for a few days etc.. We got to two hours then we went on a trip and had to drive 3 hours!! She did it and I think she was relieved. We went on a canoe trip so she had no choice but to sit. She was pulled out of gym class from April to end of the year at school. I gave her math books to practise on to make her sit (she loves math). She used to "need to walk" too. I don't remember when it stopped but it did as we tackled the standing etc...
We did not do much to reward her to be honest. She would time exactly the time we required her to sit and if she became upset or stood up or tried to use the washroom then we added more minutes. This was tough but after a few weeks she knew we meant business. We flew to a vacation in the summer 4 hours and she was so proud of her self and said "hey mom did you notice?" I was so pleased. It seems to get better so slowly and looking back every month I see the changes.

I agree with Torie sometimes they are better behaved and eat better with a bit of peer pressure. My d ate well with friends and did not fuss. I think she pretended to them she was ok so she ate to be 'normal.
I hope this helps.
Wishing all the best
scaredmom

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Reply with quote  #7 
Oh just to add my d liked a certain ramekin to put her food on and when I suggested we get rid of it she got very upset. Well i had to just take it away and let her scream it out. It was very hard to watch. Now I can use any plate or cup etc and she is fine. She used to 'measure' (eyeballing) an imaginary line on the cup of juice or milk and if a bit more would yell. My d seems to prefer that when I change things to give her a day or two notice. For example I say ' We will be having chips for snack tomorrow's. She gets a bit upset and when the day comes she just eats it. I cannot comment to her how well she is doing as that makes her angry. But so much better now. I still need to say that she will try something new in a few days and that seems to work.

Have you told the school and have you pulled him out of gym and recess? I feel that it is imperative to do that as it sends everyone a clear message that he is too sick to participate in those physical activities.

All my support.
tammy

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Reply with quote  #8 
Thank you everyone. We are tackling the need to get up early in the morning and do some activity/ exercise. He does not excessively go at the exercise and he is more content in the house and will sit and play games/ watch films. It is the thoughts in his head that he needs to be active to allow him to eat that is worrying. So far we have not stopped gym at school or playing out side at lunch break. We are stopping inappropriate exercise in terms of anything out of the ordinary or which other children would not do. Our FBT therapist and ourselves agree that if it is normal activity for an eight year old and that he is eating enough that the benefits to his mood might be beneficial. We know there is a fine line and we are keeping a close eye. If maybe that we may have to stop activity all together but I am then worried he will deteriorate in terms of food.
We are going to continue to try fear foods every week and plan to add in dealing with the portion sizes too.

We also got the news today that his iron stores are low and that his thyroid function is off and he has been referred for an urgent appointment to the hospital. He is to get iron tablets and I will try to use this opportunity to make an iron rich smoothie his medicine as so far he has resisted smoothies.

Thanks again for all of your help.
Torie

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Reply with quote  #9 
Quote:
Originally Posted by tammy
Our FBT therapist and ourselves agree that if it is normal activity for an eight year old and that he is eating enough that the benefits to his mood might be beneficial. We know there is a fine line and we are keeping a close eye.


It can be a tough call, for sure.  I agree that doing the normal things (for age) is a real plus.  I just urge you to keep be vigilant at night and when he is in the bathroom for any signs of secret exercise.  ED can be really sneaky.

Keep up the good work!  xx

-Torie

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

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Reply with quote  #10 
We have a new worry. We got a phone call from GP surgery to say he has an under active thyroid and is being referred urgently to the hospital. He also has low iron stores which I know is probably related to the eating. I managed to get him to drink spinach smoothies to boost his iron today and he has also started taking cereal as it is fortified with iron and this was a fear food for him! I don't know whether the thyroid issue is due to Eating disorder or not as I have an under active thyroid too. This may have been contributing to his mood and emotional instability as I know how tired and irritable and down I feel when my thyroid is off.
tina72

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Reply with quote  #11 
Hi tammy,
it is good when he is referred to hospital to watch that because that can be dangerous.
I think you will not get that numbers who miss at the moment with spinach smoothies, that will be done by pills or infusion.
Malnutrition has a lot of negative effects to the body. My d lost nearly half of her wonderful long blond hair (no panic, it has grown again).
We had problems with zinc and B-Vitamins, too. Her vitamin d was not measurable any more. We are adding this with meds for 4 months now. It takes a lot of time.
As loss in zinc and B12 causes depression and less appetite (and you really don´t need that now), please ask them to check that, too. Here it was not done by hospital because health insurance didn´t pay and I had to pay it private but it was not so much (around 60 € here in Germany).
Hope you get him home for christmas, but as long as he is safe there, this will be o.k. It can have really bad effects on the heart and that will be dangerous.
Tina72
tammy

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Reply with quote  #12 
Sorry Tina72. I might have made that sound worse than it is! The urgent referral is for an outpatient appointment at the hospital. Thankfully he has not been taken into hospital. Thanks for the tips on other bloods to ask for. Thanks again
meadow

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Reply with quote  #13 
Hi Tammy, yes do reach out to me by email any time, or I can email you.

It's hideout isn't it? With our daughter (8 at diagnosis), after the first three or four weeks of re-feeding we did this thing where each mealtime she either had to have a slightly larger quantity, or she had to try a bit of a feared food. In our case, the feared foods were things that she had eaten in the past but had stopped eating when she started to get ill. Her range was down to about five items. We did on separate occasions tackle ED behaviours, the shot glasses one being the biggest issue. However, we really found that with increased weight and fats, her ED behaviours all started to drop off naturally.

Ten months later, she is free of OCD behaviours and almost completely recovered from anorexia. My personal view is that increasing calories/fats is no. 1 priority. Knocking those ED behaviours on the head had a very positive overall impact for us, but I really was also struck by how the remaining ones vanished when she was weight restored (ps we overshot the 100% wfh. D went up to 105, which was massively higher than her pre-ED proportions. She's now 100% wfh and very happy) xx
meadow

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Reply with quote  #14 
Ps we stopped activity altogether. I didn't let D go up the stairs or even stand unless absolutely necessary. I got her excused from P.E. at school for 9 months too ..... and she remains excluded from 'healthy eating' talks.
tammy

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Reply with quote  #15 
Thank you Meadow. I did try to Email you before as your situation with your young daughter sounds similar to our situation. I am not very good with IT so maybe you never got it! Maybe if you can E mail me I can reply. I would appreciate it. I don't want to tempt fate but our son has been pretty settled over the last week or so and has not mentioned exercise at all! He has tackled another fear food which is cereal and has been drinking spinach smoothies to help his iron. We now have him taking soup / cereal etc in a normal bowl now and the next step is to up the size of the dinner plate! Thanks everyone for your advice and support.
tina72

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Reply with quote  #16 
Hi tammy,
that sounds great! Keep on going and have some hope and confidence. It will get better!
Tina72
tammy

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Reply with quote  #17 
Thanks Tina72 for the support and encouragement. It is much appreciated.
vitamanj

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Reply with quote  #18 
Late into this string but like many others above I wanted congratulate you on doing such a good job of refeeding..it is soo tough, but you guys are obviously getting through..! [smile]
meadow

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Reply with quote  #19 
Hi Tammy, ok have tried to email you too! Will see what happens. I didn't get yours but I'm not very tech-savvy either.  If it doesn't work, are you on the Facebook group? (ATDTfb)?
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