Search This Blog

Loading...

Sunday, 18 March 2012

The Sky's falling in......

Having been assessed by a psychiatrist this week, I now officially have a "get on with life" attitude - I prefer the term optimistic.

When my daughter was very ill with anorexia nervosa, I was urged by the wonderful people on the Around the Dinner Table forum to "have a plan".  Here is the best example of a plan for refeeding that I have come across (with thanks to MWM):


Rule : Life stops until you eat.
Details: 3 meals and 3 snacks a day. Magic Plate. No leaving food on the plate.  Meals are 45 minutes. Snacks are 30 minutes. No more than 4 hours between meals. No going to the bathroom immediately after a meal, unless supervised.
Meals should be supervised in a calm, loving manner with no engaging ED.  If that means no conversation, or removing other children from the room, then that is what needs to happen.  You shouldn’t have to say much more than “food is your medicine” or “yes,  you need to eat everything on your plate” or just ”hmmm” or “uh-huh.”
Consequences: If food is left over the time limit, a liquid supplement is offered.  Simply take the plate and ask “what flavor supplement drink would you like vanilla or chocolate?” (Give choices as you would to a toddler, not too many options, and choose for them if no preference is given. )  If not consumed in 15 minutes, the calories are added to the next meal.   If the next meal is not eaten entirely and in time, repeat the above steps.  If at the end of the day, all the required food is not eaten, the patient is “On Alert” for the next day.
On Alert:  No school, or other planned activities are allowed.  The treatment team is notified that patient is on alert and a plan should be worked out with them as to what to do if food is again not eaten. Our plan was a visit to the ER, where the Dr. would have called ahead with instructions to provide supplemental calorie drinks and/or feeding tube.  The message to the patient is that not eating is an emergency situation for an underweight anorexic, even if they are not in physical distress.  The message to the ER staff should be to trust the patient’s doctor and parents who are simply following the patient’s treatment plan – you could even have it typed up and bring it with you.
Incentives:  If eating goes well, and no consequences are invoked, then  life goes on until the next meal time with no one bugging the patient about food.  We found that rewards didn’t work, and that the biggest reward for my d was just to be able to not have to think about food for a while.  Find activities to do that engage her mentally like games, books, music, etc.  Limits should be imposed on activities only if they interfere with weight gain (i.e. exercise, outings that delay meals, skip meals, or require the patient to eat in a stressful or not fully supervised manner like school lunches) or cause stress (clothes shopping, for our daughter – unstructured social events, for some kids – going to school, etc.) Eventually my d got to a better state of mind where she could look ahead to an enjoyable event or activity, but she knew that if she didn’t eat, we would pull her out. Those were the rules.


This may sound to parents who have not been in the hell of refeeding, like some militaristic, control freak, slightly psychotic parenting.  However, if you reframe the food as medicine and reframe the anorexic as diabetic, you can begin to see how life saving this plan is.

We did not have the luxury of a visit to ER or even a clinician who understood what we were doing, let alone a therapist.  There was just me, HWISO and elder daughter.  Having this sort of plan was not an option.  Besides, I hate plans.  I find that if I plan something too much, it all goes awry and I am left with having to deal with two members of the family who have difficult set shifting, have depressive personalities and lean towards catastrophising over every detail.

Luckily, the "get on with life" leaves me a position to tease the two Henny Pennys out of their misery.  If teasing is ineffective, a stern reminder that if the world is ending, we might as well enjoy the last few hours, seems to work.


15 comments:

  1. We too didn't have the luxury of support (except the wonderful online variety!) but it did work. 19 hours though...

    ReplyDelete
  2. OK, I will be honest, dear friend, but I find that plan quite terrifying! At least, I would have done as a 12 year old when I first started with AN. Yet, that type of plan seems to have worked with a number of kids with AN.

    I'd be interested to know what you think of the following:

    Would this plan 'work' for a child who develops AN subsequent to trauma - and is already suffering from PTSD because of serial bullying (by peers) and/or rape/molestation (by someone outside of the family)?

    I ask this because that is the situation I was in at age 12. As you know, I come from an awesome, loving family who knew nothing of the traumas I had experienced as a 10-11 year old, because I couldn't talk to anyone about these traumas, or find words to describe how they made me feel. I am not suggesting that these traumas actually caused my AN, because once the starvation of AN sets in, the illness drives itself. So perhaps we are talking here about external triggers versus AN (as two rather separate components).

    Now, all people with AN would find the plan you describe distressing, and they may feel traumatised by it. But I do wonder if there's a difference between someone with AN who has pre-existing trauma and someone who does not, in terms of the way that treatment is applied.

    When a person is suffering from PTSD linked to traumatisation by other people, albeit NOT family, would this plan not be a re-enactment of trauma - that worsens the PTSD? I recall that when my parents attempted to re-feed me in my early teens, I became absolutely terrified of, and distrustful of them. One might argue that that terror and distrust is a normal part of re-feeding in AN (and I would agree), but I do wonder whether different re-feeding rules might apply to anorexic individuals with pre-existing PTSD.

    It would be fair to say that most kids that develop AN have not been traumatised by others and do not have PTSD before they develop AN. But some have. And if we reduce mental illness to a 'brain disorder', then PTSD is also a 'brain disorder'. It is well established that trauma can induce changes in brain functioning.

    What do you think?
    xxx

    ReplyDelete
  3. And I will add... I am not suggesting that any pre-existing PTSD is tackled before re-feeding, because the immediate priority IS re-feeding. Any good trauma therapist will know that.

    What I am questioning, is whether a different approach to re-feeding is applied; e.g. one that employs DBT skills?

    ReplyDelete
  4. ELT

    I can see that the plan may be terrifying to a patient. My question to you is (and this not an aggressive question - you know that I love you dearly!)

    Is there any point in trying to deal solely with the trauma and PTS that may have pulled the trigger on your anorexia, whilst you are still severely malnourished and underweight? Is not refeeding a vital cornerstone of recovery?

    No one is suggesting that is done in any way other than caringly and compassionately. No one is suggesting that whatever traumas may have contributed to the eating disorder should be disregarded. This is solely about making sure the medicine that will aid full recovery (alongside addressing the other issues therapeutically) is administered.

    I think your Psych was the one who said you would have the same conversation over and over again until you had gained weight?

    Just to reiterate, I am not being aggressive or confrontational in any way - words are so difficult - xx

    ReplyDelete
  5. Well, I have lived the re-feeding just as MWM has described. Yes it was traumatic, for all of us here. Hideous , vile, scary re-feeding.
    However it worked, it worked really well and I will be eternally thankful that I had the tenacity and toughness to see it through. I can't imagine re-feeding a person with an existing PTSD or other trauma issues. It is so sad and hard and I hate that people are subjected to such angst. I really think that anyone who has recovered despite all of these is a mighty strong individual and I bow down. Respect.

    ReplyDelete
  6. It appears on paper like a battle with the parents being all control freaky and dominating but it is not like that at all. It is all done with the utmost compassion and love (most of the time) and it really helped me to think of food as medicine.

    xx

    ReplyDelete
  7. I just started blogging about my recovery, to get support, give support and write my thought on paper. Have a look and tell me what you think.
    http://givemeoneyear.blogspot.com/

    ReplyDelete
  8. I only just got round to reading the further comments...

    Thanks for responding to my comments Charlotte, and Louie :)

    I actually thought that I had pre-empted your first comment, Charlotte, by my second, shorter comment above in which I wrote: "I am not suggesting that any pre-existing PTSD is tackled before re-feeding, because the immediate priority IS re-feeding."

    By writing that I hoped I was making it clear that I do believe that the immediate problem of starvation must be tackled first, and that the person must learn how to eat and to gain weight.

    And yes, my psych (that is, the one who has helped me over recent years; not the one who barely even talked to me and merely prescribed medication when I was a teen...)DID emphasise the importance of weight gain before any therapy to tackle co-morbidities, which included PTSD. He DID say that we would talk round in circles if I was starving and very underweight.

    So yes, I fully agree that re-feeding is a cornerstone of recovery and the first treatment to use. And no good doctor would let a child continue to starve him/self and lose weight without intervention.

    I guess the 'MWM' approach (not sure who MWM is...) does sound harsh. I like the sound of compassion, Charlotte, because it is compassion and validation of feelings that has played such an important role in my own recovery. The most unhelpful approach I had (in my teens) was from doctors who applied a re-feeding regime based upon threats and punishments (if I didn't gain weight) and merely prescribed medication - with the apparent assumption that my mind/brain was simply fu*ked for no reason - and that by not eating I was being a rebellious brat who wanted her own way. Being thought of a 'naughty girl' just made me feel worse about myself.

    Although it is true that some of the feelings that accompany some people's AN are utterly irrational - e.g. "if I touch a chip I will absorb its oil and immediately grow huge" - I didn't have that many irrational fears. I wasn't scared of getting 'fat'. If a girl has been raped by a mature male it is quite reasonable to fear that if they gain weight and grow boobs that they will attract unwanted attention from men. I was utterly terrified of men in my teens. I was also bullied for being a nerd and by absorbing myself in AN, I felt I didn't need to interact with my peers. The whole things has been complicated and layered.

    When a person has PTSD related to emotional trauma, that pre-dates the ED, the thoughts and fears that accompany the ED are often strongly related to the trauma - and are not irrational. I guess that's why I am not keen on the idea of separating the ED from the person and giving it a name like 'ana' or 'mia', or even 'ED'. That works really well for some people (ED sufferers and their families) - to think of the nasty ED changing the person's thinking - which it often does. But the 'real' person behind the ED may also be struggling a lot with very real fears, if something traumatic happened to them before the onset of their ED. In such cases, re-feeding probably won't cure the person of all their psychological problems, even if it cures their AN, but it will make them more receptive to therapies.

    I didn't think you were being at all aggressive or confrontational, Charlotte. You know I think you're awesome :)

    ReplyDelete
  9. Mea culpa, Cathy for not reading your second comment before replying.

    The above may sound like some Dickensian workhouse plan but I have never met a bunch of more kind and compassionate people than my comrades on the forum. Their fierce protective love for their children and their determination to help their children recover and go on to lead "normal" lives shines through every post.

    The idea behind the plan is to administer medicine. We try to do it by surrounding our children with love, hope and kindness and encouraging them through hell, so they can come out the other side. It is not easy and we all admit to having the occasional melt down but there are many of us who have made it through and come out the other side with our children back! You've met my daughter via Skype and you know what a gem she is. As she says, it wasn't pretty but the end result is my little ray of sunshine - I am being all soft and gooey - she bought me flowers for Mother's Day.....

    ReplyDelete
  10. Cathy I think a key point here is the firm loving words of not punishment but that food is the most important medicine right now and Ed won't let you eat. But not eating cannot be an option because I love you and won't let you starve. It takes a great deal of love and patience to stay the course. At some point it seems to free the sufferer from fighting their starvation. I do think as much as my d suffered severe anxiety over any food or even fluid , I did see the relieve eventually arise in her. She did need ngt feeds for a brief time but it was enough to get her going. Traumatic experiences should always be treated with calm loving non judgemental love. FeelIngs should always be acknowledged . Distorted, delusional thinking is real to the sufferer but clearly out of their abIlity to respond safely and cognitively. That's where uh huh and mmm come in handy, allowing them the acknowledgement if their feelings with the wisdom that feelings do not have to be reasoned with. Restricting, starving and purging can and will harm and possible kill our loved ones. This is is what fueled my patience and perseverance with all the compassion I could muster

    ReplyDelete
  11. Also one last thought whether the anxiety is fueled by a real or imagined trauma., it is real to the sufferer. The fear that evokes seems to be the same. I suggest that it is the fear that fuels the anxiety. Without in anyway minimizing the trauma, I think may be the individuals biological response to fear that fuels the response because there are probably many more people sufferering from real trauma like abuse, rape etc but most don't develop eating disorders. So it's really the phobic fear response that is being addressed. Does that make sense?

    ReplyDelete
  12. Hi, it's me, Cathy/ELT, trying to respond on my mobile phone..

    I think you all know that I'm a great fan of FEAST and fully endorse re-feeding in AN. I think you know me well enough to know how I admire all you parents. I know that many of you have used these types of strategy with great success with your kids. I guess I felt quite 'triggered' by the MWM strategy above; that is, triggered by bad memories of feeling utterly misunderstood and frightened as a teen suffering with AN, PTSD etc.

    The difficulty I had as a teen was that no-one seemed interested in anything but re-feeding and dolling out medication. I desperately needed some therapy and support with the things I have already mentioned. What helped this time round was the promise of support with these other issues - after re-feeding.

    xxx

    ReplyDelete
  13. ELT

    So glad it has helped this time round and you are an invaluable member of the FEAST UK team. xx

    ReplyDelete
  14. Ditto , I'm so glad you were able to get what you needed Cathy. Compassion ad the tools you needed to help you through your traumas. I don't think your emotional needs should be ignored but ones ability to effectively use those tools is so greatly finished if the brain is malnourished.

    ReplyDelete