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kateb

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Urgent Ideas required please to prevent relapse.  A few weeks ago about  S15 was told that he didn't need snacks any more, or could be "free flowing" as his therapists calls not having a meal plan and eating hardly anything. Up until then we followed three meals and three snacks for a year and he gained weight and then grew upwards. He never refused a meal or a snack for a year. Since becoming "free flowing" he has steadily deteriorated - he was told to eat "every 2 - 4 hours" and guess what he heard 4 hours so the maths of the day did not allow for any snacks anyway. He is rude, disrespectful, swears at me. the last two therapy sessions, I have moved them back up to weekly, the stupid woman was supposed to reinstate the meal plan however has managed to do it without directly telling him, but getting me to "talk through how I see T regaining independence over meals", in other words making me the bad person by saying he has to go back to three meals and three snacks. We saw her this morning. T sneered, wrote down abusive messages about me and sniggered throughout the session. He refused dinner last night and I told him that he would have to have supervised lunches at school for a week. He has come back home saying the school have told him they can't enforce supervised lunch so he won't have it. He has refused snacks and seems to realise that I can't do much about it. He is obsessively doing work upstairs. Just feel so over this as he was doing so well and we are right back to where we were in September last year when he came out of hospital when I did taking his phone away, money away, computer away (which I've just removed) but I can't bear to go through it all again.  
toothfairy

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Reply with quote  #2 
Hi kateb
Welcome from another boys mum.
Your S sounds like he is in active anorexia, & is in no way able to take control of his own meals at this stage.
It takes a very long time to deal with this.Average recovery time is 5-7 years with best cases 2-3 years.
It is often a huge mistake to hand back control at this stage.
First he needs to be fully WR & still gaining into his 20’’s.
We have had 3 solid years of 3 meals & 3 snacks minimum 4000 often 5000 calories every day without fail.
He is still following 3 meals & 3 snacks, and will be for the foreseeable future, he got ill at 13 and he is nearly 17 now.
He is in strong recovery, but still following this plan,
My advice is take back full control. He possibly needs to get his weight up too.
Here is a thread on the subject. It is long but worth reading through including the links.
https://www.aroundthedinnertable.org/post/stages-and-timelines-and-how-they-set-us-all-up-to-fail-7917698#gsc.tab=0

TF


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Food is the medicine. Recovery is possible.
toothfairy

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Reply with quote  #3 
Would there be any way you could get to the UCSD 5 day family intensive in San Diego?
I dont know what country you are in but I had that programme as my plan B, but managed to get him into recovery here in Ireland.
http://eatingdisorders.ucsd.edu/treatment/oneweek-intensive-treatment-programs.html

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kateb

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Reply with quote  #4 
Taking back control is what I am trying to do. The school have refused to supervise his lunch. I’ve taken his phone and his computer - he doesn’t care. He won’t sit down at the table so we can’t sit for ages like we used to taking 2 hours over a meal. He was fine a month ago and gaining weight, but since first appt and free flow has lost 3 kg. Tempted never to go to CAMHS again but worried I’ll need hospital bed soon
scaredmom

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Reply with quote  #5 

HI I am so sorry you need to be here. 
I agree 100% with toothfairy, he is quite entrenched in ED. You do need to get back control and get the weight up.  I know it is hard but it does take years. WR does not mean recovered.

Do you need to talk to the school? It seems as if he is making the decisions about the school supervising too. 
I hope you are well supported yourself to get this done. 
I know it sucks big time!

Please ask all the questions you have. We really do want to help
XXX

Food+ more food+time+love+good professional help+ATDT+ no exercise=healing---> recovery (---> Life without ED)

scaredmom

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Reply with quote  #6 

So some parents have had to supervise lunch themselves at school. Are you in a position that this is feasible?

XXX

kateb

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Reply with quote  #7 
Hi yes I talked to the school today and they said they had been worried too and I really thought that they got it.  I tried to phone back but no answer but I had got an email saying they would not resume supervised lunch because T refusing it.  I can't really believe it but there we are.  Up until yesterday T  had dinner, lunch and breakfast just not 3 snacks since being told he didn't need to.  I just need to think of how to regain control and put in some strategies but from past experience I know it will involve some violence and since being home from hospital last year he has grown a lot and is way stronger than me, so obviously we will be back to police etc.  I have just emailed the hospital he was in to see if he can return to them short term, but as we are in the UK that is probably impossible without him being physically in danger first, and he is a long way from that at the moment.

kateb

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Reply with quote  #8 
Yes I supervised lunch at school myself for three months when he first came home.  If he doesn't turn up to the room and they say they can't enforce it, then I don't think that will work and it will give him a lot of satisfaction because he has spent all afternoon telling me how much he is enjoying not having snacks I say he should have because he now realises I am such a horrible person etc etc.  I think I need to think of something else.
tina72

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Reply with quote  #9 
I really hate that when the so called "professionals" blow up your good work with one sentence.
You already know that it was a really bad idea to give him back full control in such a short time and what you see is a relapse because of that.

So as the others said, you need to take back control. That is not easy but you really need to do that. Talk to school, I can imagine that they did not say that about supervising meals. If it is really not possible, he needs to come home for lunch. No school without breakfast. If he does not sit at the table the food comes to him.
3 meals 3 snacks again until you see a good state again. And then SLOWLY give control back. We needed a year for that and lunch is still supervised and plated here 1 year after WR.

And I would fire that therapist...
And get CAHMS into the boat asap. You might need to bring him to ER if he refuses food for more than 24 hours.

Tina72

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scaredmom

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Reply with quote  #10 

Hmmm, So the school won't supervise at your S does not wish it. So how about taking him out of school. He has not kept weight up and he is showing signs of significant illness. And if he is sick - no school? 
And why in the world would the therapists say that?! I am so sorry, they really should know that relapse is high when only diagnosed a year ago. Kartini clinic usually recommends parents in charge until the child is leaving home and they work towards feeding on their own, not control over to the child so early. I am so sorry.

Do you still have appts with the therapists? They need to see that their "help and expertise" were really none of those!

So sorry, I am mad on your behalf.
XXX

tina72

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Reply with quote  #11 
Can you get help from a male family member? An uncle or elder cousin?
Yes, and I would take him out of school as long as he is not cooperating.

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kateb

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Reply with quote  #12 
therapist is from CAMHS.  She still does not understand why saying he has to have a snack, if he is hungry, every 2 - 4 hours is so stupid because he will hear 4 hours and guess what, that means there is no time for a snack between meals.  Yes I know what I need to do and we had that system before about no food no school etc, but have gone back to work now so actually quite difficult to enforce, I gave up work for 7 months to be at home with him during his recovery and as he was doing so well I have now gone back.  So I would have to leave which is fine, just annoying.
tina72

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Reply with quote  #13 
Can you get someone from CAHMS to tell him he DOES need the snacks again now because the situation has changed?
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tina72

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Reply with quote  #14 
So change that therapist ASAP. If she does not understand that this was wrong she cannot calculate and she does not know anything about AN. People recovering from AN do understand things different.
If he insists on the 4 hours, can you wake him up at 6 a.m. for breakfast, 10 a.m. for snack, 2 p.m. lunch, 6 p.m. snack and 10 p.m. supper for one day so he sees that this is not working and that he needs to get back to 3 hours in between?

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tina72

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Reply with quote  #15 
Another question, does he have a MP for the 3 meals he is eating? Is he eating the same amount of calories that he ate before or is he restricting again?
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kateb

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Reply with quote  #16 
Im still using the meal plan from the hospital broadly but I add quite a few extra calories.  He always finishes his dinner.

tina72

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Reply with quote  #17 
So the problem really seems to be the blood sugar going up and down because he has too big gaps in between meals or do you think he is not eating enough in total?
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kateb

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Reply with quote  #18 
I think its both.  he always seems hungry and as he is a 15 year old boy should have an enormous appetite.

tina72

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Reply with quote  #19 
"He is obsessively doing work upstairs."
Did you tell that CAHMS? That is definitivly a sign of AN in your house again. And by the way, how did the therapist react to the behaviour of your son in that appointment this morning? Did she think this is o.k.?

I am so sorry you have to go through this again and I am so angry because that was really not necessary.

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kateb

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Reply with quote  #20 
Yes I told CAMHS about the work, and the therapist seems to think that Tommy was just very upset and that I should have given him a cuddle.  I told her that if I gave him a cuddle he would hit me and he definitely did not want one.  And I have been trying to reduce the work for a year and it had been quite successful - he would go out with friends, play games, etc but that has all gone out of the window in the last five months.  I even took two of his friends on holiday with us and they all had a great time, eating huge amounts!  That was in mid August.  So frustrating.

tina72

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Reply with quote  #21 
Quote:
Originally Posted by kateb
I think its both.  he always seems hungry and as he is a 15 year old boy should have an enormous appetite.



So that is good that he feels hunger. So the decision not to eat that snack is only ED driven.
I did see a lot more ED in early days when my d did not eat every 3-4 hours. If she has her snacks (and she only needs one snack in addition to 3 meals at the moment but is fine with it now) she is well and no ED behaviour seen. If she had that snack delayed I can see more ED behaviour again so it is all driven by blood sugar level to keep constant here.

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tina72

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"the therapist seems to think that T was just very upset and that I should have given him a cuddle"
REALLY? She did say THAT?
So she never seems to have heard something about overexercising in AN???
In that state I was not able to even TOUCH my d, no idea to give her a cuddle! Does she really think you can recover from AN with cuddling???
No words for that.
You have already achieved so much. You know what to do. I am so sorry that you need to but there is no other way I think.
You do not need to go back to square one but you need to bring him back on the right path.

Delete the name in Nr. 20 if you do not want to have it public...

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d off to University now 22 months after diagnose, still doing FBT and relapse prevention 
kateb

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Reply with quote  #23 
The crowning glory today was, when he refused his snack he then opened the scone and took a photo of it.  I asked why and he said he was going to send it to Jackie (therapist) to prove a point he had made to her, that I always put too much butter and jam on toast.  I have told her already that I think she over emphasises with him and actually colludes with him, so in his mind, they are both against me.  No?  Not that it matters because I will have to pick up the pieces while she is in her office.
tina72

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Reply with quote  #24 
"I have told her already that I think she over emphasises with him and actually colludes with him, so in his mind, they are both against me."

That might be the case but it is also possible that he only thinks she is on his side. They hear often very different things that you hear in appointments. I hope she is not colluding with him because that would be terrible and really not professional.

I would talk to CAHMS about all that on Monday without him and ask for anyother therapist asap.

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d off to University now 22 months after diagnose, still doing FBT and relapse prevention 
tina72

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Reply with quote  #25 
If he is still complaining about too much butter on jam on toast that is the best proof he could give you that ED is fully there again.

Sorry, need to get dinner ready now. I hope others will come with ideas soon.
Please keep us updated and report tomorrow how it goes on.

We are with you. You are not alone. You will get that.

Tina72

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