Fam­ily care an anorexia op­tion

Fam­ily ther­apy for anorexia boasts im­pres­sive suc­cesses, but it’s not for ev­ery­one. Health ed­i­tor Adam Cress­well re­ports

The Weekend Australian - Travel - - Health -

IT took a while for Syd­ney mother Jan to re­alise some­thing wasn’t quite right with her daugh­ter Ashleigh, then aged 131/ 2. At that stage weigh­ing 62 kilo­grams, Ashleigh was sen­si­tive about her weight — which was per­fectly healthy, but to­wards the up­per end of the nor­mal range. Ashleigh men­tioned to Jan (not their real names) that she wanted to shed a bit of the ‘‘ puppy fat’’ that was mak­ing her un­happy.

For the next cou­ple of months, un­til about Oc­to­ber 2006, all seemed to be go­ing well. Ashleigh con­tin­ued to eat well, was sporty, healthy and — so it seemed — happy. Her mother no­ticed a bit of weight had come off, but noth­ing to cause con­cern. Slowly, that changed. ‘‘ I started to no­tice that she was mak­ing dif­fer­ent choices about food,’’ says Jan. ‘‘ There was al­ways an ex­cuse — ‘ No, I don’t want a salad sand­wich, I’ll just have the salad with­out the bread’.’’

So be­gan a near year-long or­deal dur­ing which mother and daugh­ter con­sulted their GP, then waited weeks to see a psy­chol­o­gist and di­eti­tian, be­fore Ashleigh was fi­nally taken to the eat­ing disor­ders unit at the Chil­dren’s Hospi­tal at West­mead, Syd­ney.

At the time of her ad­mis­sion, Ashleigh had lost over 20kg. Her pe­ri­ods had ceased eight months ear­lier. Her hair was fall­ing out, and was be­ing re­placed by a soft fuzz sim­i­lar to that on baby’s heads. Her teeth were brit­tle and chip­ping, her skin was break­ing out and she had dark cir­cles un­der her eyes.

Whereas a nor­mal heart­beat would have been some­where be­tween 60 and 70 beats per minute, Ashleigh’s scarcely rose above 42.

‘‘ They had to tube her im­me­di­ately, and put her un­der heat lamps for three to four days,’’ her mother re­calls. ‘‘ She was tubed for a week.’’

Anorexia ner­vosa is a lethal dis­ease that kills 20 per cent of those af­fected — a higher mor­tal­ity rate than for ei­ther de­pres­sion or schizophre­nia.

There is a paucity of re­search com­par­ing dif­fer­ent treat­ments for anorexia, but there is a push in Aus­tralia to widen the avail­abil­ity for a treat­ment method that has the most re­search ev­i­dence to back it up.

Called the Maud­s­ley Approach, it is suit­able for peo­ple who have had anorexia for less than three years. Con­trary to pre­vi­ous treat­ment pro­to­cols — many of which have in­volved hos­pi­tal­is­ing the pa­tient when they be­come dan­ger­ously ill, ef­fec­tively sep­a­rat­ing them from their fam­i­lies for weeks on end — the Maud­s­ley Approach puts par­ents in the front line by teach­ing them how to han­dle the prob­lem at home.

Once pa­tients are well enough to leave hospi­tal if they ini­tially re­quired in­pa­tient treat­ment, phase one of the three-stage treat­ment fo­cuses on weight restora­tion. A ther­a­pist works with the fam­ily, em­pha­sis­ing to the anorexic pa­tient the se­vere health dan­gers as­so­ci­ated with star­va­tion, and coach­ing the par­ents on how to in­sist the child eats.

Sib­lings are also in­volved to be a sup­port for the pa­tient.

Once the ado­les­cent has ac­cepted the need to eat and weight is re­turn­ing, the treat­ment moves into phase two, when the ther­a­pist and par­ents help the child take more con­trol over their own eat­ing, grad­u­ally trust­ing them to take more meals un­su­per­vised. Phase three starts when the ado­les­cent can main­tain their weight above 95 per cent of their ideal weight, and is aimed at es­tab­lish­ing a healthy iden­tity. The three phases usu­ally take one year. Trial re­sults show be­tween 60 and 70 per cent of ado­les­cent pa­tients have re­cov­ered by the end of the year-long treat­ment, while 75 to 90 per cent have re­gained their nor­mal weight five years later.

The method is not with­out its crit­ics, who say not all par­ents are able to give up work in or­der to su­per­vise chil­dren all day. They also ques­tion the ef­fect on sib­lings of be­ing side­lined, and hav­ing nightly din­ner­time con­fronta­tions — some­times in­clud­ing, as in Ashleigh’s case, threats of sui­cide — played out nightly near or in front of them.

One of the main in­ter­na­tional ad­vo­cates of the approach, Daniel le Grange from the Univer­sity of Chicago — who helped de­velop it fur­ther af­ter it was first de­vel­oped at the Maud­s­ley Hospi­tal in Lon­don, where he once worked — has been in Aus­tralia for the past sev­eral weeks, brief­ing health work­ers on how the pro­gram works and what train­ing is re­quired.

The pro­gram is non-drug-based and has neg­li­gi­ble com­mer­cial links. The main out­lay for par­ents and health work­ers is a text book on what to do, cost­ing about $20 and $50 re­spec­tively. It has now been adapted for treat­ment of bu­limia, which is more com­mon than anorexia but does not have such se­ri­ous out­comes.

Af­ter a slow takeup by a hand­ful of cen­tres in Syd­ney and Melbourne, and a few in Vic­to­ria, avail­abil­ity of the Maud­s­ley Approach for anorexia may soon widen more rapidly thanks to a more en­thu­si­as­tic back­ing from NSW Health.

For many fam­i­lies, it’s a bet­ter op­tion than some in-pa­tient treat­ment pro­grams, which can be ex­tremely ex­pen­sive and which in some cases have forced fam­i­lies to sell their homes to fi­nance it. Even so, it’s not for the faint-hearted. Jan re­mem­bers her daugh­ter ‘‘ scream­ing, ar­gu­ing, (and) my hus­band and I sit­ting on ei­ther side of her at the ta­ble so she couldn’t es­cape. We would be at the ta­ble for three hours so she would eat some­thing — not one night, but night af­ter night af­ter night.’’

Le Grange con­cedes the pro­gram can be ‘‘ gru­elling’’, but coun­ters crit­i­cism that it’s not a re­al­is­tic op­tion for those par­ents who can’t af­ford to take sev­eral weeks off work to give the sick child the care and su­per­vi­sion re­quired.

‘‘ If par­ents don’t have that lux­ury, we can look for grand­par­ents or aunts,’’ le Grange says. ‘‘ You just have to be creative as clin­i­cians.’’

The only other rea­son why some­one might not be suit­able, says le Grange, other than hav­ing anorexia for more than three years, is that they are too sick. The cut-off is if some­one is be­low 75 per cent of their healthy weight, a cat­e­gory that cov­ers about 20 per cent of pa­tients pre­sent­ing with anorexia.

Stephen Touyz, pro­fes­sor of clin­i­cal psy­chol­ogy at the Univer­sity of Syd­ney, and codi­rec­tor of the Peter Beu­mont Cen­tre for Eat­ing Disor­ders at the Wesley Private Hospi­tal, says the Maud­s­ley Approach re­ceived the top rat­ing of any treat­ment for anorexia from Bri­tain’s Na­tional In­sti­tute for Health and Clin­i­cal Ex­cel­lence, which as­sesses the cost-ef­fec­tive­ness of ther­a­pies for the UK’s Na­tional Health Ser­vice.

Touyz, who is work­ing on a tool that will al­low doc­tors to grade a pa­tient’s anorexia by sever­ity — much as can­cers are cur­rently graded from one to four — says the strength of Maud­s­ley is that it en­cour­ages early in­ter­ven­tion in anorexia.

‘‘ The mes­sage is: if you think your child has anorexia, you want to get in early, and treat it early,’’ he says. ‘‘ Be­cause if it be­comes chronic, it’s very hard to treat . . . and Maud­s­ley does have highly suc­cess­ful out­comes.’’

Ashleigh, mean­while, has sta­bilised her weight at 52kg. Jan, who says she would rec­om­mend the Maud­s­ley Approach to oth­ers, says the next mile­stone will be when Ashleigh’s pe­ri­ods restart, which the doc­tors think could be within three months if she can keep her weight up.

‘‘ It’s not a quick fix. But we’re ab­so­lutely stronger as a fam­ily. We al­ways were strong.’’

Pic­ture: Re­nee Nowytarger

Make it work: Daniel Le Grange says that if par­ents can’t give the time to help, then other fam­ily must

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