This is a true story – a parent knows in their heart that something is terribly wrong, that their child is sick, and yet the doctor is saying ‘don’t worry, off you go home, she’s okay’. You try to believe the doctor, who has high standing in your community, but secretly you are worried that your daughter is definitely not okay. Bracing yourself, you manage to convince the doctor that your child needs a second opinion. To appease you, an appointment is made – you look at the date, not for another 10 weeks. What do you do? Your sister suffered Anorexia when you were a child. You know the signs. The signs your daughter is exhibiting. She was always slim, but now she is so slim she is almost disappearing.
Ten weeks. It’s too long to wait, surely? But the doctor IS the doctor. He must know best. To tell him that this is URGENT, that your daughter needs to see an eating disorder specialist within one week, would seem disrespectful, right? Do you trust your instinct, your gut feeling, or do you trust your doctor and wait the 10 weeks? And let ED have a huge head start?
A friend gives you My Kid is Back to read and you know for sure that you are right. Your daughter is developing Anorexia. You want early intervention with Family-Based Treatment. You want to start this treatment NOW, not in 10 weeks. But you live in the country, and options are few. Your doctor sees no urgency and you don’t know who else, or where, to turn to.
A few weeks ago, I received a letter from Wendy (not her real name), the mother in this story, and she was feeling desperate. Eight of the 10 weeks had passed and both she and her daughter were suffering greatly. The mother with worry, the daughter with Anorexia. Calls were made, appointments were made, and within several days, the daughter was admitted to hospital. A very sick young woman. Would the scenario have played out differently if the daughter had been able to see an ED specialist eight weeks earlier? Quite likely. Even while her daughter is ill, Wendy is thinking of other parents. She wants them to act, insist upon, early intervention. This evening, she wrote:
Was just thinking about my journey so far and the nervous breakdown it has almost caused me! Is it possible to get some sort of brochure out to country gp’s that they should:-
Step 1 – listen to worried mothers! Consider the child’s predisposition signs for this illness (anxiety history, perfectionism etc). Provide them with a list of these in the brochure to watch out for and match to the potential onset of the illness.
Step 2 – refer immediately to a paediatrician (the paediatricians seem to have more “pull” with specialist clinics or over-riding admissions criteria).
Step 3 – some sort of information brochure that gives a clueless mother and doctor some idea of what to do. Details on Maudsley, list of all local (if any!) Maudsley trained therapists, reference to Butterfly Foundation, F.E.A.S.T., Maudsley Parents local CAMHS, books such My Kid is Back and other titles, including those by Janet Treasure (for example, A Collaborative Approach to Eating Disorders).
Stress that time is of the essence. That you must not allow the limiting behaviour – that it is NOT normal teenage behaviour to limit food etc. Book the Maudsley therapist as soon as possible. Forgive me, you have probably thought of all this yourself but your reaction to my desperation made me realise how critical it is for early detection and a path for treatment – not just wait till the golden date of the specialist appointment. I’ve truly never felt so adrift in the ocean in my entire life and it is the first time in my 30 year marriage where my husband has not known what to do either – has left me feeling abandoned at the shore! I think in the early stages most committed parents would have the power to use some of their parenting skills to watch for deceptive behaviour, insist on eating full meals, so lessening ED’s voice whilst waiting for help.
I was one of the parents that ED started to take over as well. I did the additional drive into town to get “THAT” brand of low fat icecream because that is all she would eat. I look back and realise that it was so damn stupid. (another beating up of myself) But, don’t worry, that beast no longer will get his tentacles on me as well as my daughter. I promise you.
I was able to tell Wendy one small piece of good news – there is in fact a brochure of information that she can give her GP.
EATING DISORDERS: AED RESOURCE FOR EARLY RECOGNITION AND MEDICAL RISK MANAGEMENT
If you think your GP or other health professional lacks knowledge in eating disorder recognition and care, a good first step is to offer them a copy of a brochure developed by the AED Medical Care Standards Task Force. This brochure provides critical education for physicians and other medical care professionals in the early detection and medical risk management of eating disorders in children, adolescents and adults.
Titled Eating Disorders: Critical Points for Early Recognition and Medical Risk Management in the Care of Individuals with Eating Disorders the booklet comprises 10-pages, and is written in an easy-to-read, outline format, for the health professional who is often the first point of contact for a parent or sufferer seeking help. The booklet highlights critical diagnostic and medical management information that is essential knowledge for medical care professionals who are in a position to provide early detection, medical care, and treatment referral.
This gem of a booklet is downloadable form for easy printing and distribution. Help our doctors learn about ED, tell them about this link; print the document if need be and take a copy along on your next visit to your local clinic. You may be saving a life.