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teecee

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Posts: 15
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








teecee

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Posts: 15
Reply with quote  #6 
Quote:
Originally Posted by Torie
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

Caregiver
Registered:
Posts: 15
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

Caregiver
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Posts: 15
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
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