As some of you will already know, earlier this year my daughter was diagnosed with severe anorexia which appeared relatively suddenly after a trekking trip to Nepal late last year. Sudden weight loss on an already slight frame for her 183cm managed to tip her brain into starvation mode, triggering a fairly rapid descent into compulsive exercising, obsessing about food and eventually actively restricting intake. By the end of February she was in hospital with a heart rate of 27, BSL of 1.6 and other chemical imbalances, where she remained for 5 weeks before being medically stable enough to return home.
Since then we have been participating in the Maudsley approach to treating anorexia which places the parents in the driving seat of restoring the child to full nutrition with support from a family based treatment (FBT) support person. The Maudsley approach differs from conventional anorexia treatment in that it recognises the central role of families in treatment, rather than blaming them for the condition.
Practically this means 24hr supervision of the child to minimise physical activity, requiring the child to eat 3 meals and 3 snacks a day, weighing weekly then adjusting activity and intake according to weight gain or loss. Sounds simple but anorexia is a horrific mental condition which torments the child to exercise compulsively and each mouthful is like asking them to throw themselves off a cliff. My daughters anorexia is a female persona who coaches and encourages her to resist our efforts to refeed her and then punishes her awfully when she succumbs to our insistence that she eats or sits still. To get the required food into her, we have to sit with her, remind her to take mouthfuls, not allow any other activity unless she eats and at times take her to emergency department if she absolutely cannot eat. My otherwise beautiful, gentle, honest, witty and caring daughter can turn into a raging violent beast resembling a snarling or cowering wolf when the anorexia voice is very loud. My husband or I must sleep with her to stop her exercising during the night.
I have been managing to work part-time since this started but have been struggling to give APNA the attention it deserves. In a joint decision by the APNA board and myself, it has been deemed in my and APNA's best interests for me to take 3 months leave of absence to focus on my precious daughter and do what it takes to restore her to full health. In the last few weeks I have predominantly been on leave and the chance to apply myself fully to the task of looking after my daughter has seen a 4 kg gain in 4 weeks. We are not sure how much further we have to go as we will be judging the ideal weight by the diminishing of anorexic behaviours rather than a BMI figure as such.
I leave APNA in the very capable hands of the APNA staff who will continue to strongly support the membership, develop the new services we have planned, finish off the projects currently in train etc. The APNA Board is looking at options for an interim CEO and will inform the membership when a decision is made.
Finally, I would love it if nurses could read the websites at the end of this blog regarding the Maudsley approach to treatment of anorexia. We have been so blessed by a GP who took us seriously when I first raised concerns, access to the Royal Children's Hospital Eating Disorders Team through participating in a research trial even though we are out of region, and finding the Around the Dinner Table web forum.
Some key messages for nurses from our experience are
- As nurses you will come into contact with concerned parents - take them seriously. Research has shown at least one general practice visit from a concerned parent is positively correlated with the existence of an eating disorder. The concerning behaviours can occur while child is still in a healthy BMI weight range.
- A heart rate of 37 is not normal even if they are athletic. The clinical markers for hospital admission include a heart rate of 50 or less. At our GP surgery ECGs are done by a private pathology company who did the ECG but let us go home for three days before the GP read the results. A growing teenager who is losing weight and exercising for 2 hrs a day with a low heart rate is medically compromised. We were admitted as an emergency as soon as the GP saw the results and remained in hospital for 5 weeks.
- If parents are concerned and cannot access specialist treatment for a while, there is no reason to not start insisting they eat. Point parents to the websites and books at the end of this blog. The sooner they get started the easier it is to knock it on the head. Do not recommend avoiding making food an issue - if they are anorexic they cannot 'choose' to eat. If they are not, they should be able to eat the food placed in front of them with no issue.
- When refeeding, parents need a lot of encouragement and support. You can feel very much like you did when you bought your newborn home from hospital and family based therapy, while supportive in nature, has to challenge you keep being tougher, be authoritative as a parent at a time when you had loosened the reins a bit and constantly be reviewing your strategies. I have times when my husband is at work, trying to cook a calorie dense and hence generally fried meal, and my daughter takes off upstairs to do star jumps - i have to chase her, avoid burning the dinner but also make sure dinner is not delayed etc. Some days, in my efforts to supervise breakfast and my daughter getting dressed, I drive to school in my PJs with hair going everywhere! Not the professional APNA CEO look I am more used to...
- And finally, while I know my daughter was likely to get this whatever we did as it is predominantly a genetic predisposition and biological response to weight loss, I do sometimes wish we had taken more seriously the nutritional needs, in particular of fats, of growing, athletic teenagers . Like most households these days we have been obesity/cholesterol aware and only had low fat milk, yoghurt etc, lean meats and 'healthy' take away options (well most of the time!). Also like many working families, we often all ate at different times and the kids often made their own individual dinners and no-one ate desserts. The family meal is not just a good social family bonding time, it encourages a good intake and socialisation round eating. An expectation that whatever is placed on the plate is eaten and all of it to boot would potentially be preventative for those predisposed to anorexia. And it can't hurt the others!
As I find myself in the Land of OZ and working our way back to Kansas (Wizard of Oz analogy for the movie illiterate!), keep up teh good work in primary health care land. I look forward to returning with renewed vigour and enthusiasm in September.
Websites
http://www.maudsleyparents.org/
http://www.aroundthedinnertable.org/
www.aedweb.org/Medical_Care_Standards.htm
Books
Brave Girl Eating by Harriet Brown (easy to read and could be our story in terms of describing the behaviours and treatment)
Help your teenager beat an eating disorder by Lock and Grange ( great How to book on Maudsley method)
