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teecee

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Reply with quote  #1 
Hi
My 16 year old D was diagnosed with ED in Feb 2018 having restricted for 6 months.
Her history is high performing in sports, school studies, caring, loyal...initially very keen to become the fittest she could in her sport which led to restricting. When the ED took hold, shockingly very quickly, so did the suicidal thoughts.
She started with shingles in Jan 18 which led to check ups with GP. The low mood had started around Sept 17 when we first saw a nurse who prescribed the combined pill. No concern re weight etc then. GP was fantastic when we attended with shingles and low mood. I disclosed my concerns with suicidal thoughts and GP helped me address this with my D. On one occasion this led to me quickly acting and attending A&E which led to Crisis Team referral and diagnosis of ED.
Went through refeeding stage where the ‘exorcist’ showed itself. She mostly complied with refeeding but took us by surprise with point blank refusing one meal....wailing about tummy aches...pleading she just was too full. Stuck with it and read the actual phrases from Eva Mysby’s book whilst going through it....! It worked. Have had some attempted manipulation. D says the ED voice is ‘being nice’ and trying a new tactic which is worrying. D becomes frustrated about waiting for CAMHS appointments as each time we are told she is a priority for CBT but we have to wait for a space. In the meantime we had to call 999 as she had a psychotic like episode. Screaming, overheating, aggression like I’ve never seen....I thought she was going to fit....she doesn’t remember it.
We start CBT this week....what can we expect from this?? Will there be more screaming fits? I just need to be prepared as I certainly wasn’t last time. I thought the worse symptoms would appear early on in the journey but was very wrong. Having said that we gave come a long way.
Thank you for listening.
Torie

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Reply with quote  #2 
Hi teecee, welcome to the club no one wants to join.  Glad you found us.

Unfortunately, it is darn near impossible to prepare for what comes next because it is darn near impossible to guess what tomorrow will bring.  "Good" days and bad mysteriously come and go, and the only pattern I have found is that gradually, oh so g-r-a-d-u-a-l-l-y, the good days increase in number and degree while the bad ones decrease in number and severity.  Even that, though, has its exceptions as I think you have already seen, as tackling ED can temporarily result in backlash (which is worth fighting through).  

If re-feeding just started in February (?), it will likely take a while longer to get her properly weight restored.  Please be aware that many if not most clinicians underestimate how much weight will be needed so it is best not to discuss numbers at all with your d.  (No talk of target weight, calories, etc.)  Most likely, your d will need to return to whatever was her highest previous weight and then add enough additional weight that an unintentional loss (illness, etc.) won't push her back down the rabbit hole.

Not sure if that answers any of your questions, but please feel free to keep asking them!  It sounds like you are off to a good start.

Keep swimming. xx

Torie

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

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Reply with quote  #3 
Thank you Torie
That was really helpful. Yes we made the mistake of involving her in knowing her weight, now only me and her dad know. I think the dietician is happy with the current weight as she has let her do 4 hours exercise a week. This did shock us as previously she was only allowed 4 x 15mins a week.
Just wondered if the CBT would have a negative affect initially much like we experienced when we got within weight range. My nerves are shot with constant worrying and ‘being on guard’....!
Yes, will keep swimming :)
Torie

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Reply with quote  #4 
Four hours of exercise a week?  Yikes, that sounds like a lot.  Is her current weight at least equal to her previous high weight?

I'm not sure what they are planning to do in the CBT sessions, but unless it is ED-related, it seems likely you won't see too much kickback from ED.  xx

-Torie

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

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Reply with quote  #5 

Hi teecee,

Being on guard is the norm for a lot of us especially at the beginning as you are learning a lot in a short time and worried about your child.
So glad you found this forum. It was the light in the dark for us and gave me hope and tools to help my D get better.  You will get so much great advice and support here. Torie have given such great advice. 

I have concerns about her exercise and the fact that you started re-feeding in February right?  So I think it is early, early days. It took us 6 months to get to WR and now 8+ kg above that do I really see improvements in her mind. Your D needs to get back to her previous Wt for height percentile and even more as she is still growing and you need to feed all the linear growth and maturation of the internal organs and the brain.   You write "initially very keen to become the fittest she could in her sport " this sounds very much like ED driven behaviour.  

My feeling( my opinion only) is that she should not be allowed any exercise or only the 4X15min per week is fine until she is well WR or more  and mentally better. I really question your dietitian on that one. 

Please read up on exercise compulsion on this forum. My D wanted to be the fastest runner for track and we had to stop all exercise and then she was standing all the time- this was ED. It took us about 4 months really to get the standing to stop and for her to sit more. She would beg to have a walk she would not like to sit in the care unless dad drove as he liked to speed. We had to be with her 15 min max/ per day  and a slooooow walk. Well, ED would fight and walk the outside (longer) part of the block, she would run away from dad,  say that if she sat or ate XYZ then could she have another walk or bike ride or ........ a lot of "rationalising" for more exercise. It kept going. I do not think that use of exercise should be a reward for ED EVER. Exercise IS what ED wants just like restricting etc. 

I find it interesting that some "ED specialists" give back exercise to a kid whose ED was driven by exercise? It is their (ED's) Drug of choice, less food and more exercise. So the goal is the opposite really, MORE food and LESS or no exercise.  Exercise and "getting healthy" are very common partners in the beginning of ED. I have seen so many stories here that started the same. ( that is what happened to us)

Once d was at a better weight ie 5 months into re-feeding  AND better state and could sit and not be driven to constant movement, we let her have a bit more exercise 2 hr per week for soccer AND extra food to make up the calories spent. The exercise is really hard to fix. It fed my D's ED a lot. 
She now exercises for fun. She knows that she is not allowed ,not yet, to do high intensity exercise and I have to approve certain things in gym class.

Please asking questions. There is always someone here  that has been in your shoes.

XXX









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Food+more food+time+love+good professional help+ATDT+no exercise+ state not just weight+/- the "right" medicine= healing---> recovery(--->life without ED)
teecee

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Reply with quote  #6 
Four hours of exercise a week? Yikes, that sounds like a lot.
Hi Torie
We were surprised, as was she. Since mid Feb she has complied with the eating plans given and has never stood constantly or tried to do exercise (she is supvervised 24/7....we take it in turns to sleep with her also to ensure her safety). We had the one episode where she refused a meal but did eat it.
She struggled with suicidal thoughts and low mood. I think they look at it that if she can lift her mood through some light exercise then that’s better than medication or hospitalisation??
She chose to give up her sport in Dec 17 (just before we got the diagnosis in Feb 18) as the stress of everything was too much, leading to her having a breakdown. She had recognised she was poorly at that stage. She was doing 20hrs tennis a week before and that diminished to approx 8 hours a week (circuit training, kettle bells and spinning classes). We supported her giving up her sport.
The team supporting us have told us they think we caught AN early. They are an eating disorder specialist team so I assume the CBT is ED focused.
We see dietician, Family Therapy, home support staff as well as having access to the ED specialist clinicians and this week we see the CBT guy.
I have to say I am not good at knowing calories, weight ranges facts and figures...I just feed her what I know she needs and it seems to be working. She is definitely at the top end of WR and from reading posts I understand that will move. We are having more positive days that bad days now and that’s how I measure it.
My husband and I are on the same page in terms of trying to make sure we do the right thing.
I hear everything you say about the exercise and will certainly watch that as we don’t want to be back to square one.
The dietician has told her to expect an increase in food when we see her next week. My D says she understands that. We have had to keep a diary of how exercise affects mood/energy levels/ negative thoughts. My D says she felt low mid week as she had a negative thought for the first time in a while (weeks not months). Other than that it seems to have gone well. Time will tell I suppose.
teecee

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Reply with quote  #7 
Hi Torie
We were surprised, as was she. Since mid Feb she has complied with the eating plans given and has never stood constantly or tried to do exercise (she is supvervised 24/7....we take it in turns to sleep with her also to ensure her safety). We had the one episode where she refused a meal but did eat it.
She struggled with suicidal thoughts and low mood. I think they look at it that if she can lift her mood through some light exercise then that’s better than medication or hospitalisation??
She chose to give up her sport in Dec 17 (just before we got the diagnosis in Feb 18) as the stress of everything was too much, leading to her having a breakdown. She had recognised she was poorly at that stage. She was doing 20hrs tennis a week before and that diminished to approx 8 hours a week (circuit training, kettle bells and spinning classes). We supported her giving up her sport.
The team supporting us have told us they think we caught AN early. They are an eating disorder specialist team so I assume the CBT is ED focused.
We see dietician, Family Therapy, home support staff as well as having access to the ED specialist clinicians and this week we see the CBT guy.
I have to say I am not good at knowing calories, weight ranges facts and figures...I just feed her what I know she needs and it seems to be working. She is definitely at the top end of WR and from reading posts I understand that will move. We are having more positive days that bad days now and that’s how I measure it.
My husband and I are on the same page in terms of trying to make sure we do the right thing.
I hear everything you say about the exercise and will certainly watch that as we don’t want to be back to square one.
The dietician has told her to expect an increase in food when we see her next week. My D says she understands that. We have had to keep a diary of how exercise affects mood/energy levels/ negative thoughts. My D says she felt low mid week as she had a negative thought for the first time in a while (weeks not months). Other than that it seems to have gone well. Time will tell I suppose.
teecee

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Reply with quote  #8 
Hi scaredmom
I tried to quote but messed up! Thank you for your kind words, I sure need some.
I agree the exercise is really hard to fix, especially as she’s done it since she was 6 years old and loved it.
It’s been a huge part of her life for so long but having said that she is enjoying new found things...new friends, socialising and dare I say it....relaxing!!
Eva MUSBY’S book has literally been my life saviour in the darkest hours. I’m so glad I found this forum too. I’ve never understood Internet forums and so avoided using them but having read some posts I felt I needed to get involved to keep sane!!
Xx
teecee

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Reply with quote  #9 
Thought I would post an update...so my D saw the CBT professional who assessed her and said he is going to work with her on perfectionism and social anxiety as possible triggers for the RAN. I understand there may be 20 or so sessions??
The ‘good’ days are outweighing the down days and she is complaining about being overweight. Lots of AN chatter about not liking herself, having no real friends (despite actually getting lots of support). When we eat over these episodes there are so real periods of my lovely, funny, beautiful D which I long to see more of. I’m still swimming
HopeNZ

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Reply with quote  #10 
Hello teecee.  I'm so glad you seem to have a good team working with you, and congratulations on the hard work you've already done to help your lovely d kick that ED to the curb!

I just wanted to add my two cents worth.  It seems to me that your team is in rather a hurry to move your daughter along.  If refeeding only started in February this year, it seems very soon to allow your d to both take up exercise once more, and to start CBT.  I do realise our children are all different and on individual trajectories so all I can do is go on our experience.  Our FBT therapist began doing some CBT-based counselling with my d when she was about 95% WR.  At first it seemed to be going well: my d was compliant, and said all the right things.  However, it became clear that it was just too soon for her.  She has now been WR for six months, and only now are we considering that she might be ready to ease back into some counselling, based on her vastly improved state of mind and mood.  I'm sure you've read about the need for time, and lots of it, following WR, to allow the brain to heal.  My concern is that you may use up some of your precious 20 hours of CBT by starting before your d is really in a position to benefit from them!  Perhaps you could discuss this with the therapist and agree to give it a go, on the understanding the sessions could be suspended until your d is a little further into WR if it looks as if that would help?

Best of luck, keep us posted.
tina72

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Reply with quote  #11 
Hi teecee,
"The ‘good’ days are outweighing the down days and she is complaining about being overweight. Lots of AN chatter about not liking herself, having no real friends (despite actually getting lots of support)."
Complaining being overweight and lots of AN chatter are characteristic for this extinction burst time around WR. Try to ignore it and just keep feeding and do not cut back calories until she is in a better state. State, not weight is the secret. Until her behaviour is much better she is not on a healthy weight. That might be some more weight than expected. Keep swimming and enjoy the good days! They will get more week by week.
Tina72

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

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Reply with quote  #12 
Hello
Thank you for your advice. I do hear you im just confused as to what I should do.
My D became weight restored after about 6 weeks. She was putting on a couple of ks a week she went from 53k mid Feb to 67.5 (now). Is that still concerning? I know the weight needs to remain and go up as she grows (she’s 5’6 and 16yrs). 67.5 is the heaviest she’s been. I know it’s not an exact science but she has a healthier look/glow about her.
She’s disclosed when ED has tried to get her to do something she recognised as negative and her low mood is less frequent now. She’s tired and this morning we had a conversation about exam revision. She feels she did too much revision yesterday which has led to her feeling tired today. Astonishingly she has decided to take a break from revision and relax (unheard of during the height of ED).
Also (astonishingly) yesterday she did half hour supervised exercise with her dad (injury prevention stretching) and broke off early as tea was ready without any complaining, stating she would do the other half hour another day. I took this to be a positive sign.
She has had an ultrasound scan on her abdomen this morning and the nurse basically said everything seemed normal. Obviously the GP will need to double check the results but we are seeing blood tests come back which are positive now.
She has the second CBT appointment today. The outreach worker has previously said that sometimes CBT will work on inevitable thing then realise something else needs to be worked on and do altered/added to. I will do what you say and ask if it can be postponed if necessary without ‘wasting’ the sessions.
The parent support group me and hubby go to will be going through treatment types tonight I think so I will raise it with the therapists then.
Many thanks guys. I really hope they are not rushing her through. I must say I don’t get that feeling but I will be alert as I know the NHS has huge pressures.
X
tina72

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Reply with quote  #13 
Hi teecee,
what you tell us shows that her state is getting better. To be able to take a break from revision and to be able to cut exercise for tea is really no AN behaviour. So maybe she is in a healthy weight range now and the rest (AN thoughts, complaining) will fade by time, too.
With my d we try to help her to keep that weight now because she is grown out but your d might still grow a bit at that age. So keep watching her and weighing regularly and then you will see wether you will need to add again to keep the weight or not.
And be aware that learning for exams can make them lose weight, too, my d lost more than 1 kg in January just by learning.
So maybe it is a good idea to see if CBT gives her progress with perfectionism and social anxiety or not. I think if he does support you as parents it cannot do any harm.
Tina72

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

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Reply with quote  #14 
Dear Tina72
Thank you I feel reassured by your words. I will keep watching like a hawk. I’m not back at work yet and we are still supervising her 24/7 as I’m so desperate for her not to have a relapse. As yet the weight has not gone backwards but if it shows any sign I will just put extra effort in to making sure it stays up.
The clinician did say at the beginning that studying involves a lot of brain power and hence nutrients so she seems to have recognised that this may have made her tired.
I’ve asked her to try and recognise whilst she’s doing the intense studying at school that she needs an enforced break rather than waiting until she is tired. She told me she will try and do this.
I know there is no good time for things like this to happen in life but I wish we didn’t have exams in 2 weeks. Having said that school have been brilliant and applied for special dispensation (up to 5% marking buffer) and have informed us it’s been accepted and that she can do her exams alone with an invigilator. If anyone else is in the same position it’s worth asking your school for support in this way...
Thank you xx
tina72

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Reply with quote  #15 
Yes, we had great support from school, too. My d had her final written exams in March and it went very well. The final oral exams are in 4 weeks and then she is finished with school. I am a bit frightened that she might fall into a big hole with doing nothing until University starts in October and we will have to find some work here for her to keep her doing something...[wink]
We will have to watch them like a hawk for a long time, but at the moment I feel that it is getting a bit normal again. Hubby and me do not talk about ED the whole day and we try to stay alert but at the same time calm a bit down (difficult to do, really).
If possible, try to do something nice for yourself and hubby now. You deserve that.
I cross my fingers for her exams!
Tina72

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

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Reply with quote  #16 
I’m so pleased the exams went well for her. That’s one less hurdle I suppose. We have been speaking French to each other today in anticipation of a short oral exam on Monday. I told her she can erase all thoughts of French speaking after that!!
My D signed up to a national citizenship challenge throughout the summer (2 x separate weeks residential and 1 x week non residential- if she can still go). I need to see nearer the time if she can still do it but it may be that they do something similar near you?? It doesn’t start until August and I know we will be still supervising her meals then but they cater for children who need support for different things so fingers crossed.
We are still in the stage of talking about it all the time and of course friends/family enquire. I really want us to be able to chill but at the moment there seems to be no time. If we get a couple of hours whilst she’s at school the most we muster is breakfast at the local farm cafe!! Too exhausted for much else - even walks/trips out are a distraction for her so not relaxing like they once were.
I long to be able to be free if this so we can all live again.
I hope you have a lovely summer and university goes well for your D. Xxx
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