Friday Reflections: Be Informed, Be in Charge and Build a Team

Guest Post by Axa Carnes

I took my daughter to her Pediatrician during summer 2005, because she wasn’t eating much. At the
Pediatrician’s office she was weighed and measured. She had grown 3 inches from the previous year but had not gained an ounce. She had fallen from the 75th percentile to the 40th percentile. Beyond the concern regarding the numbers, the Pediatrician noticed clearly disordered behaviors when she examined my daughter. The child didn’t want to sit at the examining table but wanted to stand or dangle from the table while having her body rigid as a board, she fidgeted non-stop during the examination, could not focus on the Pediatrician, and told her that she was not on a diet just eating healthy, etc. Thankfully, the Pediatrician referred us to a Therapist who specialized in children and teens using the Maudsley method.

The Therapist gave me a brief overview of Maudsley; told me this was a brain based disorder; parents were not at blame nor was the child; she was not doing this to be wilful and she couldn’t help herself. Therefore, we had to take charge of her food by cooking it and serving it and daughter had to eat the food. We were not given any further directions regarding how to feed daughter and her instructions seemed pretty straight forward. She also told me not to allow daughter to join the summer swim team, but we didn’t listen and allowed daughter to join the swim team. At that time, we didn’t see the seriousness of daughter’s illness nor could we have predicted what the next 18 months would bring.

During the next year and a half, daughter lost and gained the same 3 lbs. By this time, we had had 2 consultations with an RD but her caloric recommendations were quickly sabotaged by daughter who picked up on the plan and became a compulsive exerciser. We also switched therapists to one who was more accessible to us. Our new Therapist would express concern to me when she would weigh daughter and there would be no progress made. She would also unmask my denial that daughter was doing better and looking better. Daughter kept growing vertically even though she remained in the 40th
percentile.  Our Pediatrician weighed daughter and kept tabs on vitals. Her recommendation was that daughter needed to gain to the 50th percentile.

On July 2007, my daughter became catatonic at a swimming championship event. When we came home, I searched the term Maudsley and found www.maudsleyparents.org, which hosted the ATDT forum at that time. When I started reading the stories from parents who were feeding their children at home, I knew that I had found the missing link. I had been exposed to the theory but now I had the tools – the HOW TO – feed my child. I read the book How to Help Your Teenager Beat an Eating Disorder by Drs. Locke and LeGrange and I had an epiphany. It became clear to me that *I* had to be in charge if my daughter was going to get well.

The next day, we went to see our Therapist and I presented her with this contract:

• We, the parents are in charge of our child’s treatment plan.

• As parents we will consult and work in tandem with FBT and Pediatrician regarding treatment for our
child but ultimately we will make the decision that we think is best suited for our daughter.

• Our new motto is “Life Stops until You Eat”. NOTHING: school, social events, play time, going outside, pool, video games, etc. happens until daughter has eaten her food and snacks.

• Daughter will eat 3 full meals and 2 snacks per day and have no say or choice regarding what is served to her.

• Daughter will eat one challenge food per week (this was previously established by Therapist but we
could never implement it)

• Daughter will limit outside play time to 1 hour per day (again, this was previously implemented by
Therapist, but we had not been able to stop her from exercising for hours)

• Daughter will sit for one hour after every meal, and not be allowed to go outside or to move around.

• If daughter doesn’t eat, I will call FBT and she will step up care (hospitalization). Therapist had told
daughter if she didn’t eat at home, she would be tube fed.

• I will participate in ATDT forum as a support to myself. I handed a copy of the contract to the surprised therapist who just nodded in agreement.

That day was the beginning of our road to recovery and current six year remission. I was in charge of most decisions and if FBT and Pediatrician disagreed, I brought them plenty of materials and evidence based research to read to back up my position. All of the decisions that we made involved at least one parent in agreement. Thanks to being in charge, we brought daughter’s weight to the 75th and did not keep her in the Pediatrician’s recommended 50th percentile.

My advice to parents who are either starting on this journey or stuck without making progress, is to follow the 3 B’s.

B 1) Be informed – I know how overwhelming it is to find yourself in a situation with a child who seems a stranger to you and who wants to starve him/herself. But, I urge you to read everything you possibly can about the latest treatment practices for Eating Disorders. My not being informed cost my child 18 months of unnecessary suffering in her life. Go to www.feast-ed.org to find a treasure trove of information that is reliable and evidence based. If you are able to, go to FEAST conferences as you will learn much from experts and other parents.

B 2) Be in Charge – This is your child whom nobody loves and knows like you do. Place yourself in the driver seat of his/her treatment team. Be your child’s advocate if he/she is not getting effective treatment. You may have a wonderful treatment team but eventually your child will come home to you and you will have to be in charge in order to help your child recover. The majority of providers are not experts on Eating Disorders, so be informed (B1) in order to insist that your child get what is best for him/her.

B 3) Build a Team – You may be one of the lucky few who has an effective team who practices evidence based treatment for eating disorders or you may be with the majority of people who don’t have a lot of choices. Regardless of where you fall on the treatment spectrum, I encourage you to build a team. Be relentless in the pursuit of care for your child. If you don’t have choices, try your best to educate the providers or ask them if they would consult with the very generous experts who are willing to offer advice to other providers. At the very least, find a sympathetic Pediatrician or General Practitioner who is willing to be educated on eating disorders and evidence based practices. You may need this physician to support you in case of emergencies, educational issues or even potential legal action. Of course, ATDT forum can serve as a support team for you, as the parent.

One last B for the road: Be strong! Saving your child from an Eating Disorder will probably be the most courageous and difficult thing that you will ever do.

Axa



Axa Carnes is a past F.E.A.S.T. Board and has been a member of Around the Dinner Table since 2007. Axa's daughter was diagnosed at 9, refed at home and weight restored by 11.  She has now been in recovery for 6 years.

Comments

  1. Great piece and wonderfully vulnerable to share your own "don't do as I did" moments.

    ReplyDelete
  2. Thanks for that sharing your experience. One lesson for therapists is that if we parents take ages to be effective, it may just be we need more 'How tos". Once we get to see how it can be done, we really do take charge.

    ReplyDelete

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