This week’s blog covers a topic - menstruation in female patients - which I have written about before, but, given its critical importance to our female patients and their parents, I’d like to bring it up again.
First let me distinguish between menarche (first period) and the resumption of menses (monthly periods). Menses is an important marker of recovery in girls who menstruated prior to the onset of their eating disorder, and something I’ve written about before. Today I would like to talk about menarche. Menarche is about adequate weight, of course, but more importantly also about the state of one’s health. This state includes female hormone levels, including LH, FSH, and estradiol as well as thyroid hormones such as cortisol and leptin.
But before we begin, a little background.
In another previous blog I reviewed an article by Ingemar Swenne of Uppsala University Children's Hospital, published in the ?journal Hormone Research 2008. I read this article as well as one in Acta Paediatrica and another on diagnosing the young patient looking for information useful to parents who might be asking: “how much will my young daughter with anorexia nervosa need to weigh in order to grow normally again and get her period???”
A few more clinical terms to know:
Amenorrhea = no menstrual periods
Primary amenorrhea = never had a menstrual period?
Premenarcheal = before menarche?
Linear growth = growth in height
The Swedish study considered only primary amenorrhea in young eating disordered girls, that is, girls who have not ever had a menstrual period. The question was: how much weight gain was required to resume a normal growth rate and then begin to menstruate? How could providers determine an "ideal weight”, given that a young girl who has never had a period will also need to grow taller (and hence heavier) in order to get one?
Dr Swenne noted that "adolescent girls who present with an eating disorder before menarche have not only lost weight but are also stunted in growth" (emphasis mine). In other words, they showed not only an inadequate weight gain but also a reduced rate of linear growth, aka growth stunting.
Obviously, growth stunting is a very bad thing. ??But of particular interest was a finding that a slow-down in weight gain and linear growth - even when no loss of weight had yet occurred - preceded diagnosis of and treatment for an eating disorder by several years! In other words by the time the parents and physician realized that the child was in trouble far too much precious time had been lost. Parents (and doctors!) failed to take into account the weight gain that should have happened (but never did), instead focusing solely on observable weight loss. The cumulative effect of this was to greatly underestimate how malnourished a child had in fact become.
??The Swedish study further showed that it is not adequate to restore a child to their highest-ever-weight for the simple fact that, had they not acquired an eating disorder, they would have weighed more. Repeat: it is not sufficient only to regain lost weight. This is an important clinical point for providers, as some parents will become nervous if they think providers are restoring their daughter to a weight "heavier than she has ever been". So how can we as providers help them understand the necessity for this?
This necessity begs the question: exactly how does one determine how much weight a young female child needs to gain in order to restore normal growth and development? The Swedish study emphasized the inadequacy of "standardized targets", sometimes called statistical "ideal body weights", calculated from simple formulas related to height (read: BMI) or to actuarial tables. The researchers found that relying on these "ideal weights" may result in the child never weighing enough, with persistent amenorrhea as a result. This also reflects our clinical experience at Kartini Clinic. They also made the observation that 36% of the girls, once weight-restored, seemed to need a weight somewhat above the population average to achieve menarche and cautioned providers and parents not to underestimate the weight gain needed to continue growing. Rather than focusing on picking a single weight number based on statistics, they recommended a return to the normal growth track for the individual child, one they had been growing along for several years before they got sick.
Put another way, providers need to look at your daughter's individual growth record and determine what her normal, pre-eating disorder growth track likely was, and then aim for that. Only then is the brain and reproductive system likely to "turn back on" the myriad of hormones (leptin, estrogens, testosterones, growth hormones, and others yet undetermined) needed for menarche, linear growth, bone growth and all the other elements of normal growth and development.
Record keeping in Sweden is apparently more organized and widespread than in the US, enabling Dr. Swenne to look back at each child's growth curve for height and weight, at least since age 6. Our record keeping may be more variable, but most parents can gather their child's growth charts from their primary care doctor. Doing so is essential. The eating disorder doctor will also need to know how tall both biological parents are and roughly how much they weigh. A detailed history of weights and heights on both sides of the family may also be necessary. ??There is no doubt that body habitus (general size, weight and height) is strongly affected by genetics.
To summarize, these are 5 key messages for us as providers and for parents:
??Instead of focusing on weight, let’s focus on normal functioning (in this example, menstruation)?; your daughter may indeed need to be returned to a weight higher than she has ever weighed before. Remember, she is supposed to be growing!
Let your daughter know that you do not know how much she needs to weigh, and also that you do not care, because her weight is less important to you than her normal growth and development.?
Talk privately with your eating disorder team about any misgivings you may feel when your daughter needs to achieve a weight higher than she ever did before.
To assist your eating disorder treatment team in making the most individualized assessment of weight gain possible (i.e. not based on generalized BMI), provide them with all of her growth charts, heights and weights.
Don’t ignore—or let your doctor ignore—the failure to gain weight that should have taken place. It’s simply not enough to look at weight loss alone.? Health is a state, not a weight!