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The Long Game

by: Katie Maki ( aka Mamabear)                               

I have noticed so many parents with kids in the 9-14 age range lately who are being told to back off on calories and supervision because the child has reached “weight restoration” during treatment for an eating disorder. As a family who fed a very young child through puberty, I feel compelled to address this.

As the mother of a daughter who began her descent into anorexia at 9 and was diagnosed at 10.5, I have walked this walk and am now 9 years out on the other side. My daughter has been in a solid recovery now for many years. I have talked with hundreds if not thousands of families over the last decade and have seen that the kids who are fed high calorie and high fat meals and are monitored for a long period of time have the best outcomes.

Kids in this age range are entering into (or already should be in) the time of their lives of the MOST growth and changes since infancy. In the next decade of their lives they must morph into young men and women. To do this takes a MASSIVE amount of energy for the average kid, let alone a kid diagnosed with the Metabo-psychiatric illness of an eating disorder. The average girl will gain 40 to 50 pounds during this time and grow ten inches. For boys it is 50-60 pounds and 12 inches. https://www.edcatalogue.com/puberty-body-image/

For those new to this realm, the first results for a large study came out in this past year from the “ANGI” (anorexia nervosa genetics initiative). The results pointed to metabolic and psychiatric clues to the origins of eating disorders. What this shows is what all of us who have walked this path know already: eating disorders are highly genetic and our loved ones bodies’ metabolisms are warped and do not right themselves for a very long time.

This is especially complicated when you have a child who is supposed to be growing exponentially and going through puberty.

My daughter was around 4 feet 7 inches and 66 pounds when she was officially diagnosed and at her lowest weight. She developed severe Obsessive Compulsive Disorder with rituals surrounding movement, a severe exercise compulsion, auditory and visual hallucinations of “the darkness”, anxiety, panic attacks, depression. She showed me what dress to bury her in and said the only way “the voice” would go away was if she was dead.

All of these things are commonplace in the younger kids with eating disorders. Yet many in the medical field are not current in their understanding of this illness and of these side effects of malnutrition on the young child’s brain chemistry. My daughter was diagnosed with “psychosis and possible early onset schizophrenia and anorexia” in the beginning. She had Anorexia Nervosa.

ALL of these other things disappeared with tons of weight gain and time.

Of course, sometimes kids DO have preexisting co-morbids of anxiety or OCD etc. but it is really difficult to tell what is what until the child has been refed back to a high enough weight and the brain has had time for full nutritional rehabilitation.

In the beginning of refeeding, my daughter’s caloric needs kept going up. This is hypermetabolism and a normal part of eating disorder refeeding. She was initially able to gain in the mid 2000s, but then stalled out and needed 3000, 3500, 4500, 5000, and then 6000 A DAY. This was from the ages of around 11 to 14. We battled 9 inches in height, full puberty, and more than doubling of initial body weight. ONLY when her body had quit growing in height and had gone through puberty were we able to SLOWLY back off on the caloric intake. If my little teeny ten year old kid could eat 6000 calories a day, yours can eat whatever their body needs too. Dr. Peebles from CHOP recommends 4000 calories a day for kids  and they may be hyper metabolic for several years. https://vimeo.com/50460378

Learn from our mistakes. In the beginning when my daughter got up to a solid weight and had a tummy and cheeks at 11, we thought “oh no. We are going to overdo this. We should back down a bit” and BAM did that bite us in the butt. Her body dropped 7 pounds in one week by us dropping her calories down and allowing her to eat lunch on her own at school. These kids can lose weight on a dime — another aspect of their malfunctioning metabolism. And of course she was not eating lunch. She was pretending to eat and dumping her thermos of creamy cheesy noodles into the garbage in the morning when she got off of the bus. We went back to the 6000 calories and supervised eating and we stayed there for the next several years. We parents and our kids work too hard for those gains to see losses.

Only when she was able to eat on her own outside of what was required, take seconds, reliably eat when not with us and had finished growth and puberty were we able to back down. This was from 14 to 15 for my daughter. Every kid will be different as they all are on their own timeline for puberty. (Boys go through it a bit later than girls do.)

So people always ask me “But what about the growth charts? Our doctor says that he/she is weight restored and does not need to keep gaining at this rate.”

Brutal honesty here: I am happy we had no growth charts for my daughter as we never had any magic numbers to strive for. We literally just fed her until the eating disorder was at bay and kept going for all of those years.

I personally think that “target weights” should be thrown out the window in this age range because their weight is a moving target and will be for years. And frankly we have really no idea what each individual person is “supposed” to weigh or how tall exactly they are going to be as an adult. I am five feet eight inches and my husband maybe five feet ten inches. My three kids are five eight, five four, and six feet 2 inches. I just met a woman who has a son who is 6 feet 10 inches tall and his parents are under six feet. They have no idea where his height came from. Genetics and environment are crazy things.

When my daughter was in ninth grade and growth stopped she was a bit round in the butt, thighs, face etc. and the brutal truth was that I was freaked out. I was worried we were making her “too big”. I wanted to back off aggressively on her calories. My husband talked sense into me at that time. He said that we were already in the process of SLOWLY backing off on her calories/fats and that her body would adjust and morph and find a set point where it wanted to be. He was completely right. Within about 6 months her weight did not change but her body redistributed weight and she morphed into a woman’s body.

This was also the year that official recovery happened.

She was able to eat on her own outside of meals and we were able to let her plate her own meals fully and not require empty plates etc. This was also when her brain completely righted itself and she was finally able on her own to totally battle and shut down any ED thoughts. She has told me since that this was the time that she felt she was truly able to make the decision to be done with ED. She was in control and not the eating disorder.

Don’t back down.

Stay the course.

Feed them through growth and puberty.

Trust that process.

Do not focus on weight ranges and goal weights and BMIs.

Focus on behaviors.

Focus on the LONG GAME.

Throw out the timelines and stages.

I will not sugar coat it- this takes YEARS and it is hard. But ultimately it is worth it. My daughter is now eight hours away in her sophomore year of college, and thriving. She has a girlfriend of 14 months and is studying to be a sex therapist. She is recording her second album (singer songwriter), and she KNOWS that we saved her life and she is incredibly grateful for all that we did. She is my hero: the bravest person I know.

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9 Comments

  1. Erica

    This was our daughter almost to a T! All the nutritionists/doctors/therapists thought we would make our daughter “fat” and that she would reject us….wrong. To this day (our daughter is 22, eating disorder started at age 9) she thanks us for saving her life. To all you mama bears and papa bears out there — you can do this!

  2. Eva Musby

    I often tell other parents about your 6000 calories a day — it helps change their framework when they’re worrying about an increase from 2000 to 2100 calories!

    Thank you also for your honesty about your worry, at the time, about making your daughter ‘too big’, and how you guys dealt with the thought. In our parents’ community, we have become so cautious about shedding any weight bias, the subject can become taboo. Yet worries can only be resolved if they are acknowledged without judgement.

    I too am shocked how many parents are told to suddenly withdraw supervision and calories when the child or teen is declared ‘weight-restored’. It’s the worst time to withdraw support, given our children are extra-terrified of ‘going over’ the magic number, and have long forgotten how to make wise choices around food, and need coaching and guiding… or as in your case, they continue to need us to be in charge for longer than is prescribed in any manual.

    Family-based treatment is supposed to address this post weight-restoration stage with “Phase 2”, yet that is so often rushed through or ignored.

    Thank you for your super-useful story.

  3. Maria

    Omg! My daughter is kinda like yours! Musician, Bi, etc.. anyway, she eats a lot for breakfast, which is the most important because it’s set’s the rest of the day. But, she cannot stomach anything that comes from an animal! Makes her super sick! So, I wonder what you may say to that? And, anything fried also!

    • Susan

      My 14 yo daughter became a vegetarian near the beginning of her ED (anorexia) which jump started the weight loss. We restored her weight as a vegetarian, but when she became and stayed healthy, she went back to her old omnivore ways. She’s a healthy 29 yo now and still eats everything. For us, sustained weight restoration was key. BTW, 3500 to 3900 calories/day were necessary for our daughter’s weight gain. I agree not backing off of calories or supervision were key.

  4. Jennifer Gledhill

    Amazing article from a mum whose daughter developed anorexia age 9 (now a happy and recovered 15 year old). We too never counted calories, never weighed, just did what we needed to do (which was be in charge until she was grabbing her own biscuits and asking for double-helpings). Thank you!

  5. Hege

    Thank you for sharing. I will keep your advice in mind as we continue helping our daughter with meals and nutrition through puberty. She is 12,5 years old and just «weight restored».

    I also find it comforting and important that you address all the psycological issues that come with this illness, such as anxiety and panic attacks. Those may be little known to most people, and really scary when you encounter them.

    Luckily we also have the experience that these problems subside as weight is restored.

    Kind regards
    Hege

  6. Sarah, UK

    Mamabear thank you so much for writing this, it is just what I needed to read today for so many reasons. It’s good to know I’m not alone in this nightmare xxx

  7. Leslie ROI

    Thank you for the encouragement, I cried when I read mama bear and papa bear because that is all and everything. Our baby bear is just starting On this recovery journey – assessment this morning but I feel so protective and can’t tolerate the clinical generalization approach. I know my baby and we’ll get her eating normally.

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