Anorexia nervosa, neurobiology, and family-based treatment

Via Wikimedia Commons
Photo credit: Sandra Mann
By Harriet Brown, DXS contributor

Back in 1978, psychoanalyst Hilde Bruch published the first popular book on anorexia nervosa. In The Golden Cage, she described anorexia as a psychological illness caused by environmental factors: sexual abuse, over-controlling parents, fears about growing up, and/or other psychodynamic factors. Bruch believed young patients needed to be separated from their families (a concept that became known as a “parentectomy”) so therapists could help them work through the root issues underlying the illness. Then, and only then, patients would choose to resume eating. If they were still alive.

Bruch’s observations dictated eating-disorders treatments for decades, treatments that led to spectacularly ineffective results. Only about 35% of people with anorexia recovered; another 20% died, of starvation or suicide; and the rest lived with some level of chronic illness for the rest of their lives.

Not a great track record, overall, and especially devastating for women, who suffer from anorexia at a rate of 10 times that of men. Luckily, we know a lot more about anorexia and other eating disorders now than we did in 1978.

“It’s Not About the Food”

In Bruch’s day, anorexia wasn’t the only illness attributed to faulty parenting and/or trauma. Therapists saw depression, anxiety, schizophrenia, eating disorders, and homosexuality (long considered a psychiatric “illness”) as ailments of the mind alone. Thanks to the rising field of behavioral neuroscience, we’ve begun to untangle the ways brain circuitry, neural architecture, and other biological processes contribute to these disorders. Most experts now agree that depression and anxiety can be caused by, say, neurotransmitter imbalances as much as unresolved emotional conflicts, and treat them accordingly. But the field of eating-disorders treatment has been slow to jump on the neurobiology bandwagon. When my daughter was diagnosed with anorexia in 2005, for instance, we were told to find her a therapist and try to get our daughter to eat “without being the food police,” because, as one therapist informed us, “It’s not about the food.”

Actually, it is about the food. Especially when you’re starving.

Ancel Keys’ 1950 Semi-Starvation Study tracked the effects of starvation and subsequent re-feeding on 36 healthy young men, all conscientious objectors who volunteered for the experiment. Keys was drawn to the subject during World War II, when millions in war-torn Europe – especially those in concentration camps – starved for years. One of Keys’ most interesting findings was that starvation itself, followed by re-feeding after a period of prolonged starvation, produced both physical and psychological symptoms, including depression, preoccupation with weight and body image, anxiety, and obsessions with food, eating, and cooking—all symptoms we now associate with anorexia. Re-feeding the volunteers eventuallyreversed most of the symptoms. However, this approach proved to be difficult on a psychological level, and in some ways more difficult than the starvation period. These results were a clear illustration of just how profound the effects of months of starvation were on the body and mind.

Alas, Keys’ findings were pretty much ignored by the field of eating-disorders treatment for 40-some years, until new technologies like functional magnetic resonance imaging (fMRI) and research gave new context to his work. We now know there is no single root cause for eating disorders. They’re what researchers call multi-factorial, triggered by a perfect storm of factors that probably differs for each person who develops an eating disorder. “Personality characteristics, the environment you live in, your genetic makeup—it’s like a cake recipe,” says Daniel le Grange, Ph.D., director of the Eating Disorders Program at the University of Chicago. “All the ingredients have to be there for that person to develop anorexia.”

One of those ingredients is genetics. Twenty years ago, the Price Foundation sponsored a project that collected DNA samples from thousands of people with eating disorders, their families, and control participants. That data, along with information from the 2006 Swedish Twin Study, suggests that anorexia is highly heritable. “Genes play a substantial role in liability to this illness,” says Cindy Bulik, Ph.D., a professor of psychiatry and director of the University of North Carolina’s Eating Disorders Program. And while no one has yet found a specific anorexia gene, researchers are focusing on an area of chromosome 1 that shows important gene linkages.

Certain personality traits associated with anorexia are probably heritable as well. “Anxiety, inhibition, obsessionality, and perfectionism seem to be present in families of people with an eating disorder,” explains Walter Kaye, M.D., who directs the Eating Disorders Treatment and Research Program at the University of California-San Diego. Another ingredient is neurobiology—literally, the way your brain is structured and how it works. Dr. Kaye’s team at UCSD uses fMRI technology to map blood flow in people’s brains as they think of or perform a task. In one study, Kaye and his colleagues looked at the brains of people with anorexia, people recovered from anorexia, and people who’d never had an eating disorder as they played a gambling game. Participants were asked to guess a number and were rewarded for correct guesses with money or “punished” for incorrect or no guesses by losing money.

Participants in the control group responded to wins and losses by “living in the moment,” wrote researchers: “That is, they made a guess and then moved on to the next task.” But people with anorexia, as well as people who’d recovered from anorexia, showed greater blood flow to the dorsal caudate, an area of the brain that helps link actions and their outcomes, as well as differences in their brains’ dopamine pathways. “People with anorexia nervosa do not live in the moment,” concluded Kaye. “They tend to have exaggerated and obsessive worry about the consequences of their behaviors, looking for rules when there are none, and they are overly concerned about making mistakes.” This study was the first to show altered pathways in the brain even in those recovered from anorexia, suggesting that inherent differences in the brain’s architecture and signaling systems help trigger the illness in the first place.

Food Is Medicine

Some of the best news to come out of research on anorexia is a new therapy aimed at kids and teens. Family-based treatment (FBT), also known as the Maudsley approach, was developed at the Maudsley Hospital in London by Ivan Eisler and Christopher Dare, family therapists who watched nurses on the inpatient eating-disorders unit get patients to eat by sitting with them, talking to them, rubbing their backs, and supporting them. Eisler and Dare wondered how that kind of effective encouragement could be used outside the hospital.

Their observations led them to develop family-based treatment, or FBT, a three-phase treatment for teens and young adults that sidesteps the debate on etiology and focuses instead on recovery. “FBT is agnostic on cause,” says Dr. Le Grange. During phase one, families (usually parents) take charge of a child’s eating, with a goal of fully restoring weight (rather than get to the “90 percent of ideal body weight” many programs use as a benchmark). In phase two, families gradually transfer responsibility for eating back to the teen. Phase three addresses other problems or issues related to normal adolescent development, if there are any.

FBT is a pragmatic approach that recognizes that while people with anorexia are in the throes of acute malnourishment, they can’t choose to eat. And that represents one of the biggest shifts in thinking about eating disorders. The DSM-IV, the most recent “bible” of psychiatric treatment, lists as the first symptom of anorexia “a refusal to maintain body weight at or above a minimally normal weight for age and height.” That notion of refusal is key to how anorexia has been seen, and treated, in the past: as a refusal to eat or gain weight. An acting out. A choice. Which makes sense within the psychodynamic model of cause.

But it doesn’t jibe with the research, which suggests that anorexia is more of an inability to eat than a refusal. Forty-five years ago, Aryeh Routtenberg, then (and still) a professor of psychology at Northwestern University, discovered that when he gave rats only brief daily access to food but let them run as much as they wanted on wheels, they would gradually eat less and less, and run more and more. In fact, they would run without eating until they died, a paradigm Routtenberg called activity-based anorexia (ABA). Rats with ABA seemed to be in the grip of a profound physiological imbalance, one that overrode the normal biological imperatives of hunger and self-preservation. ABA in rats suggests that however it starts, once the cycle of restricting and/or compulsive exercising passes a certain threshold, it takes on a life of its own. Self-starvation is no longer (if it ever was) a choice, but a compulsion to the death.

That’s part of the thinking in FBT. Food is the best medicine for people with anorexia, but they can’t choose to eat. They need someone else to make that choice for them. Therapists don’t sit at the table with patients, but parents do. And parents love and know their children. Like the nurses at the Maudsley Hospital, they find ways to get kids to eat. In a sense, what parents do is outshout the anorexia “voice” many sufferers report hearing, a voice in their heads that tells them not to eat and berates them when they do. Parents take the responsibility for making the choice to eat away from the sufferer, who may insist she’s choosing not to eat but who, underneath the illness, is terrified and hungry.

The best aspect of FBT is that it works. Not for everyone, but for the majority of kids and teens. Several randomized controlled studies of FBT and “treatment as usual” (talk therapy without pressure to eat) show recovery rates of 80 to 90 percent with FBT—a huge improvement over previous recovery rates. A study at the University of Chicago is looking at adapting the treatment for young adults; early results are promising.

The most challenging aspect of FBT is that it’s hard to find. Relatively few therapists in the U.S. are trained in the approach. When our daughter got sick, my husband and I couldn’t find a local FBT therapist. So we cobbled together a team that included our pediatrician, a therapist, and lots of friends who supported our family through the grueling work of re-feeding our daughter. Today she’s a healthy college student with friends, a boyfriend, career goals, and a good relationship with us.

A few years ago, Dr. Le Grange and his research partner, Dr. James Lock of Stanford, created a training institute that certifies a handful of FBT therapists each year. (For a list of FBT providers, visit the Maudsley Parents website.) It’s a start. But therapists are notoriously slow to adopt new treatments, and FBT is no exception. Some therapists find FBT controversial because it upends the conventional view of eating disorders and treatments. Some cling to the psychodynamic view of eating disorders despite the lack of evidence. Still, many in the field have at least heard of FBT and Kaye’s neurobiological findings, even if they don’t believe in them yet.

Change comes slowly. But it comes.

* * *

Harriet Brown teaches magazine journalism at the S.I. Newhouse School of Public Communications in Syracuse, New York. Her latest book is Brave Girl Eating: A Family’s Struggle with Anorexia (William Morrow, 2010).

be there for that person to develop anorexia.”

One of those ingredients is genetics. Twenty years ago, the Price Foundation sponsored a project that collected DNA samples from thousands of people with eating disorders, their families, and control participants. That data, along with information from the 2006 Swedish Twin Study, suggests that anorexia is highly heritable. “Genes play a substantial role in liability to this illness,” says Cindy Bulik, Ph.D., a professor of psychiatry and director of the University of North Carolina’s Eating Disorders Program. And while no one has yet found a specific anorexia gene, researchers are focusing on an area of chromosome 1 that shows important gene linkages.
Certain personality traits associated with anorexia are probably heritable as well. “Anxiety, inhibition, obsessionality, and perfectionism seem to be present in families of people with an eating disorder,” explains Walter Kaye, M.D., who directs the Eating Disorders Treatment and Research Program at the University of California-San Diego. Another ingredient is neurobiology—literally, the way your brain is structured and how it works. Dr. Kaye’s team at UCSD uses fMRI technology to map blood flow in people’s brains as they think of or perform a task. In one study, Kaye and his colleagues looked at the brains of people with anorexia, people recovered from anorexia, and people who’d never had an eating disorder as they played a gambling game. Participants were asked to guess a number and were rewarded for correct guesses with money or “punished” for incorrect or no guesses by losing money.
Participants in the control group responded to wins and losses by “living in the moment,” wrote researchers: “That is, they made a guess and then moved on to the next task.” But people with anorexia, as well as people who’d recovered from anorexia, showed greater blood flow to the dorsal caudate, an area of the brain that helps link actions and their outcomes, as well as differences in their brains’ dopamine pathways. “People with anorexia nervosa do not live in the moment,” concluded Kaye. “They tend to have exaggerated and obsessive worry about the consequences of their behaviors, looking for rules when there are none, and they are overly concerned about making mistakes.” This study was the first to show altered pathways in the brain even in those recovered from anorexia, suggesting that inherent differences in the brain’s architecture and signaling systems help trigger the illness in the first place.
Food Is Medicine
Some of the best news to come out of research on anorexia is a new therapy aimed at kids and teens. Family-based treatment (FBT), also known as the Maudsley approach, was developed at the Maudsley Hospital in London by Ivan Eisler and Christopher Dare, family therapists who watched nurses on the inpatient eating-disorders unit get patients to eat by sitting with them, talking to them, rubbing their backs, and supporting them. Eisler and Dare wondered how that kind of effective encouragement could be used outside the hospital.
Their observations led them to develop family-based treatment, or FBT, a three-phase treatment for teens and young adults that sidesteps the debate on etiology and focuses instead on recovery. “FBT is agnostic on cause,” says Dr. Le Grange. During phase one, families (usually parents) take charge of a child’s eating, with a goal of fully restoring weight (rather than get to the “90 percent of ideal body weight” many programs use as a benchmark). In phase two, families gradually transfer responsibility for eating back to the teen. Phase three addresses other problems or issues related to normal adolescent development, if there are any.
FBT is a pragmatic approach that recognizes that while people with anorexia are in the throes of acute malnourishment, they can’t choose to eat. And that represents one of the biggest shifts in thinking about eating disorders. The DSM-IV, the most recent “bible” of psychiatric treatment, lists as the first symptom of anorexia “a refusal to maintain body weight at or above a minimally normal weight for age and height.” That notion of refusal is key to how anorexia has been seen, and treated, in the past: as a refusal to eat or gain weight. An acting out. A choice. Which makes sense within the psychodynamic model of cause.
But it doesn’t jibe with the research, which suggests that anorexia is more of an inability to eat than a refusal. Forty-five years ago, Aryeh Routtenberg, then (and still) a professor of psychology at Northwestern University, discovered that when he gave rats only brief daily access to food but let them run as much as they wanted on wheels, they would gradually eat less and less, and run more and more. In fact, they would run without eating until they died, a paradigm Routtenberg called activity-based anorexia (ABA). Rats with ABA seemed to be in the grip of a profound physiological imbalance, one that overrode the normal biological imperatives of hunger and self-preservation. ABA in rats suggests that however it starts, once the cycle of restricting and/or compulsive exercising passes a certain threshold, it takes on a life of its own. Self-starvation is no longer (if it ever was) a choice, but a compulsion to the death.
That’s part of the thinking in FBT. Food is the best medicine for people with anorexia, but they can’t choose to eat. They need someone else to make that choice for them. Therapists don’t sit at the table with patients, but parents do. And parents love and know their children. Like the nurses at the Maudsley Hospital, they find ways to get kids to eat. In a sense, what parents do is outshout the anorexia “voice” many sufferers report hearing, a voice in their heads that tells them not to eat and berates them when they do. Parents take the responsibility for making the choice to eat away from the sufferer, who may insist she’s choosing not to eat but who, underneath the illness, is terrified and hungry.
The best aspect of FBT is that it works. Not for everyone, but for the majority of kids and teens. Several randomized controlled studies of FBT and “treatment as usual” (talk therapy without pressure to eat) show recovery rates of 80 to 90 percent with FBT—a huge improvement over previous recovery rates. A study at the University of Chicago is looking at adapting the treatment for young adults; early results are promising.
The most challenging aspect of FBT is that it’s hard to find. Relatively few therapists in the U.S. are trained in the approach. When our daughter got sick, my husband and I couldn’t find a local FBT therapist. So we cobbled together a team that included our pediatrician, a therapist, and lots of friends who supported our family through the grueling work of re-feeding our daughter. Today she’s a healthy college student with friends, a boyfriend, career goals, and a good relationship with us.
A few years ago, Dr. Le Grange and his research partner, Dr. James Lock of Stanford, created a training institute that certifies a handful of FBT therapists each year. (For a list of FBT providers, visit the Maudsley Parents website.) It’s a start. But therapists are notoriously slow to adopt new treatments, and FBT is no exception. Some therapists find FBT controversial because it upends the conventional view of eating disorders and treatments. Some cling to the psychodynamic view of eating disorders despite the lack of evidence. Still, many in the field have at least heard of FBT and Kaye’s neurobiological findings, even if they don’t believe in them yet.
Change comes slowly. But it comes.
* * *
Harriet Brown teaches magazine journalism at the S.I. Newhouse School of Public Communications in Syracuse, New York. Her latest book is Brave Girl Eating: A Family’s Struggle with Anorexia (William Morrow, 2010).

From spiders to breast cancer: Leslie Brunetta talks candidly about her cancer diagnosis, treatment, and follow-up

According to Leslie Brunetta, she now has much more hair than she had last July.
We became aware of Leslie Brunetta because of her book, Spider Silk: Evolution and 400 Million Years of Spinning, Waiting, Snagging, and Mating, co-authored with Catherine L. Craig. Thanks to a piece Leslie wrote for the Concord Monitor (and excerpted here), we also learned that she is a breast cancer survivor. Leslie agreed to an interview about her experience, and in her emailed responses, she candidly talks about her diagnosis, treatment, and follow-up for her cancers, plural: She was diagnosed simultaneously with two types of breast cancer. 
DXS: In your Concord Monitor piece, you describe the link between an understanding of the way evolution happens and some of the advances in modern medicine. What led you to grasp the link between the two?

LB: I think, because I’m not a scientist (I’m an English major), a lot of things that scientists think are obvious strike me as revelations. I somehow had never realized that the search for what would turn out to be DNA began with trying to explain how, in line with the theory of evolution by natural selection, variation arises and traits are passed from generation to generation. As I was figuring out what each chapter in Spider Silk would be about, I tried to think about the questions non-biologists like me would still have about evolution when they got to that point in the book. By the time we got past dragline silk, I realized that we had so far fleshed out the ways that silk proteins could and have evolved at the genetic level. But that explanation probably wouldn’t answer readers’ questions about how, for example, abdominal spinnerets—which are unique to spiders—might have evolved: the evolution of silk is easier to untangle than the evolution of body parts, which is why we focused on it in the first place.

I decided I wanted to write a chapter on “evo-devo,” evolutionary developmental biology, partly because there was a cool genetic study on the development of spinnerets that showed they’ve evolved from limbs. Fortunately, my co-author, Cay Craig, and editor at Yale, Jean Thomson Black, okayed the idea, because that chapter wasn’t in the original proposal. Writing that chapter, I learned why it took so long—nearly a century—to get from Darwin and Mendel to Watson and Crick and then so long again to get to where we are today. If we non-scientists understand something scientific, it’s often how it works, not how a whole string of people over the course of decades building on each other’s work discovered how it works. I knew evolution was the accumulation of gene changes, but, until I wrote that chapter, it hadn’t occurred to me that people began to look for genes because they wanted to understand evolution.

So that was all in the spider part of my life. Then, a few months into the cancer part of my life, I was offered a test called Oncotype DX, which would look at genetic markers in my tumor cells to develop a risk profile that could help me decide whether I should have chemotherapy plus tamoxifen or just tamoxifen. The results turned out to be moot in my case because I had a number of positive lymph nodes, although it was reassuring to find out that the cancer was considered low risk for recurrence. But still—the idea that a genetic test could let some women avoid chemo without taking on extra risk, that’s huge. No one would want to go through chemo if it wasn’t necessary. So by then I was thinking, “Thank you, Darwin!”

And then, coincidentally, the presidential primary season was heating up, and there were a number of serious candidates (well, serious in the sense that they had enough backing to get into the debates) who proudly declared that they had no time for the theory of evolution. And year after year these stupid anti-evolution bills are introduced in various state legislatures. While I was lying on the couch hanging out in the days after chemo sessions, I started thinking, “So, given that you don’t give any credence to Darwin and his ideas, would you refuse on principle to take the Oncotype test or gene-based therapies like Gleevec or Herceptin if you had cancer or if someone in your family had cancer? Somehow I don’t think so.” That argument is not going to convince hard-core denialists (nothing will), but maybe the cognitive dissonance in connection with something as concrete as cancer will make some people who waver want to find out more.

DXS: You mention having been diagnosed with two different forms of cancer, one in each breast. Can you say what each kind was and, if possible, how they differed?

LB: Yes, I unfortunately turned out to be an “interesting” case. This is one arena where, if you possibly can, you want to avoid being interesting. At first it seemed that I had a tiny lesion that was an invasive ductal carcinoma (IDC) and that I would “just” need a lumpectomy and radiation. Luckily for me, the doctor reading my mammogram is known as an eagle eye, and she saw a few things that—given the positive finding from the biopsy—concerned her. She recommended an MRI. In fact, even though I switched to another hospital for my surgery, she sent emails there saying I should have an MRI. That turned up “concerning” spots in both breasts, which led to more biopsies, which revealed multiple tiny cancerous lesions. The only reasonable option was then a double mastectomy.

The lesions in the right breast were IDCs. About 70% of breast cancers are diagnosed as IDCs. Those cancers start with the cells lining the milk ducts. The ones in the left breast were invasive lobular carcinomas (ILCs), which start in the lobules at the end of the milk ducts. Only about 10% of breast cancers are ILCs.

Oncologists hate lobular cancer. Unlike ductal cancers, which form as clumps of cells, lobular cancers form as single-file ribbons of cells. The tissue around ductal cancer cells reacts to those cells, which is why someone may feel a lump—she’s (or he’s) not feeling the cancer itself but the inflammation of the tissue around it. And because the cells clump, they show up more readily on mammograms. Not so lobular cancers. They mostly don’t give rise to lumps and they’re hard to spot on mammograms. They snake their way through tissue for quite a while without bothering anything.

In my case, this explains why last spring felt like an unremitting downhill slide. Every time someone looked deeper, they found something worse. It turned out that on my left side, the lobular side, I had multiple positive lymph nodes, which was why I needed not just chemo but also radiation (which usually isn’t given after a mastectomy). That was the side that didn’t even show up much on the mammogram. On the right side, the ductal side, which provoked the initial suspicions, my nodes were clear. I want to write about this soon, because I want to find out more about it. I’ve only recently gotten to the place emotionally where I think I can deal with reading the research papers as opposed to more general information. By the way, the resource that most helped us better understand what my doctors were talking about was Dr. Susan Love’s Breast Book.  It was invaluable as we made our way through this process, although it turned out that I had very few decisions to make because there was usually only one good option.   

DXS: As part of your treatment, you had a double mastectomy. One of our goals with this interview is to tell women what some of these experiences with treatment are like. If you’re comfortable doing so, could you tell us a little bit about what a double mastectomy entails and what you do after one in practical terms?

LB: A mastectomy is a strange operation. In a way, it’s more of an emotional and psychological experience than a physical experience. My surgeon, who was fantastic, is a man, and when we discussed the need for the mastectomies he said that I would be surprised at how little pain would be involved and how quick the healing would be. Even though I trusted him a lot by then, my reaction was pretty much, “Like you would know, right?” But he did know. When you think about it, it’s fairly non-invasive surgery. Unless the cancer has spread to the surrounding area, which doesn’t happen very often now due to early detection, no muscle or bone is removed. (Until relatively recently, surgeons removed the major muscle in the chest wall, and sometimes even bone, because they believed it would cut the risk of recurrence. That meant that many women lost function in their arm and also experienced back problems.) None of your organs are touched. They don’t go into your abdominal cavity. Also, until recently, they removed a whole clump of underarm lymph nodes when they did lumpectomies or mastectomies. Now they usually remove just a “sentinel node,” because they know that it will give them a fairly reliable indicator of whether the cancer has spread to the other nodes. That also makes the surgery less traumatic than it used to be.

I opted not to have reconstruction. Reconstruction is a good choice for many women, but I didn’t see many benefits for me and I didn’t like the idea of a more complicated surgery. My surgery was only about two hours. I don’t remember any pain at all afterwards, and my husband says I never complained of any. I was in the hospital for just one night. By the next day, I was on ibuprofen only. The bandages came off two days after the surgery.

That’s shocking, to see your breasts gone and replaced by thin red lines, no matter how well you’ve prepared yourself. It made the cancer seem much more real in some way than it had seemed before. In comparison, the physical recovery from the surgery was fairly minor because I had no infections or complications. There were drains in place for about 10 days to collect serum, which would otherwise collect under the skin, and my husband dealt with emptying them twice a day and measuring the amount. I had to sleep on my back, propped up, because of where the drains were placed, high up on my sides, and I never really got used to that. It was a real relief to have the drains removed.

My surgeon told me to start doing stretching exercises with my arms right away, and that’s really important. I got my full range of motion back within a couple of months. But even though I had my surgery last March, I’ve noticed lately that if I don’t stretch fully, like in yoga, things tighten up. That may be because of the radiation, though, because it’s only on my left side. Things are never quite the same as they were before the surgery, though. Because I did have to have the axillary nodes out on my left side, my lymph system is disrupted. I haven’t had any real problems with lymphedema yet, and I may never, but in the early months I noticed that my hands would swell if I’d been walking around a lot, and I’d have to elevate them to get them to drain back. That rarely happens now. But I’ve been told I need to wear a compression sleeve if I fly because the change in air pressure can cause lymph to collect. Also, I’m supposed to protect my hands and arms from cuts as much as possible. It seems to me that small nicks on my fingers take longer to heal than they used to. So even though most of the time it seems like it’s all over, I guess in those purely mechanical ways it’s never over. It’s not just that you no longer have breasts, it’s also that nerves and lymph channels and bits of tissue are also missing or moved around.

The bigger question is how one deals with now lacking breasts. I’ve decided not to wear prostheses. I can get away with it because I was small breasted, I dress in relatively loose clothes anyway, and I’ve gained confidence over time that no one notices or cares and I care less now if they do notice. But getting that self-confidence took quite a while. Obviously, it has an effect on my sex life, but we have a strong bond and it’s just become a piece of that bond. The biggest thing is that it’s always a bit of a shock when I catch sight of myself naked in a mirror because it’s a reminder that I’ve had cancer and there’s no getting around the fact that that sucks.    

DXS: My mother-in-law completed radiation and chemo for breast cancer last year, and if I remember correctly, she had to go frequently for a period of weeks for radiation. Was that you experience? Can you describe for our readers what the time investment was like and what the process was like?

LB: I went for radiation 5 days a week for about 7 weeks. Three days a week, I’d usually be in and out of the hospital within 45 minutes. One day a week, I met with the radiology oncologist and a nurse to debrief, which was also a form of emotional therapy for me. And one day a week, they laid on a chair massage, and the nurse/massage therapist who gave the massage was great to talk to, so that was more therapy. Radiation was easy compared to chemo. Some people experience skin burning and fatigue, but I was lucky that I didn’t experience either. Because I’m a freelancer, the time investment wasn’t a burden for me. I’m also lucky living where I live, because I could walk to the hospital. It was a pleasant 3-mile round-trip walk, and I think the walking helped me a lot physically and mentally.
DXS: And now to the chemo. My interest in interviewing you about your experience began with a reference you made on Twitter to “chemo brain,” and of course, after reading your evolution-medical advances piece. Can you tell us a little about what the process of receiving chemotherapy is like? How long does it take? How frequently (I know this varies, but your experience)?
LB: Because of my age (I was considered young, which was always nice to hear) and state of general good health, my oncologist put me on a dose-dense AC-T schedule. This meant going for treatment every two weeks over the course of 16 weeks—8 treatment sessions. At the first 4 sessions, I was given Adriamycin and Cytoxan (AC), and the last 4 sessions I was given Taxol (T). The idea behind giving multiple drugs and giving them frequently is that they all attack cancer cells in different ways and—it goes back to evolution—by attacking them frequently and hard on different fronts, you’re trying to avoid selecting for a population that’s resistant to one or more of the drugs. They can give the drugs every two weeks to a lot of patients now because they’ve got drugs to boost the production of white blood cells, which the cancer drugs suppress. After most chemo sessions, I went back the next day for a shot of one of these drugs, Neulasta.

The chemo clinic was, bizarrely, a very relaxing place. The nurses who work there were fantastic, and the nurse assigned to me, Kathy, was always interesting to talk with. She had a great sense of humor, and she was also interested in the science behind everything we were doing, so if I ever had questions she didn’t have ready answers for, she’d find out for me. A lot of patients were there at the same time, but we each had a private space. You’d sit in a big reclining chair. They had TVs and DVDs, but I usually used it as an opportunity to read. My husband sat through the first session with me, and a close friend who had chemo for breast cancer 15 years ago sat through a few other sessions, but once I got used to it, I was comfortable being there alone. Because of the nurses, it never felt lonely.

I’d arrive and settle in. Kathy would take blood for testing red and white blood counts and, I think, liver function and some other things, and she’d insert a needle and start a saline drip while we waited for the results. I’ve always had large veins, so I opted to have the drugs administered through my arm rather than having a port implanted in my chest. Over the course of three to four hours, she’d change the IV bags. Some of the bags were drugs to protect against nausea, so I’d start to feel kind of fuzzy—I don’t think I retained a whole lot of what I read there! The Adriamycin was bright orange; they call it the Red Devil, because it can chew up your veins—sometimes it felt like it was burning but Kathy could stop that by slowing the drip. Otherwise, it was fairly uneventful. I’d have snacks and usually ate lunch while still hooked up.

I was lucky I never had any reactions to any of the drugs, so actually getting the chemo was a surprisingly pleasant experience just because of the atmosphere. On the one hand, you’re aware of all these people around you struggling with cancer and you know things aren’t going well for some of them, so it’s heartbreaking, and also makes you consider, sometimes fearfully, your own future no matter how well you’re trying to brace yourself up. But at the same time, the people working there are so positive, but not in a Pollyannaish-false way, that they helped me as I tried to stay positive. The social worker stopped in with each patient every session, and she was fantastic—I could talk out any problems or fears I had with her, and that helped a huge amount.

DXS: Would you be able to run us through a timeline of the physical effects of chemotherapy after an infusion? How long does it take before it hits hardest? My mother-in-law told me that her biggest craving, when she could eat, was for carb-heavy foods like mashed potatoes and for soups, like vegetable soup. What was your experience with that?

LB: My biggest fear when I first learned I would need chemo was nausea. My oncologist told us that they had nausea so well controlled that over the past few years, she had only had one or two patients who had experienced it. As with the surgeon’s prediction about mastectomy pain, this turned out to be true: I never had even a single moment of nausea.

But there were all sorts of other effects. For the first few days after a session, the most salient effects were actually from the mix of drugs I took to stave off nausea. I generally felt pretty fuzzy, but not necessarily sleepy—part of the mix was steroids, so you’re a little hyped. There’s no way I’d feel safe driving on those days, for example. I’d sleep well the first three nights because I took Ativan, which has an anti-nausea effect. But except for those days, my sleep was really disrupted. Partly that’s because, I’m guessing, the chemo hits certain cells in your brain and partly it’s because you get thrown into chemical menopause, so there were a lot of night hot flashes. Even though I’d already started into menopause, this chemo menopause was a lot more intense and included all the symptoms regularly associated with menopause.

By the end of the first session, I was feeling pretty joyful because it was much less bad than I had thought it would be. By the second week in the two-week cycle, I felt relatively normal. But even though it never got awful, the effects started to accumulate. My hair started to fall out the morning I was going to an award ceremony for Spider Silk. It was ok at the ceremony, but we shaved it off that night. I decided not to wear a wig. First, it was the summer, and it would have been hot. Second, I usually have close to a buzz cut, and I can’t imagine anyone would make a wig that would look anything like my hair. My kids’ attitude was that everyone would know something was wrong anyway, so I should just be bald, and that helped a lot. But it’s hard to see in people’s eyes multiple times a day their realization that you’re in a pretty bad place. Also, it’s not just your head hair that goes. So do your eyebrows, your eyelashes, your pubic hair, and most of the tiny hairs all over your skin. And as your skin cells are affected by the chemo (the chemo hits all fast-reproducing cells), your skin itself gets more sensitive and then is not protected by those tiny hairs. I remember a lot of itching. And strange things like my head sticking to my yoga mat and my reading glasses sticking to the side of my head instead of sliding over my ears.

I never lost my appetite, but I did have food cravings during the AC cycles. I wanted sushi and seaweed salad, of all things. And steak. My sense of taste went dull, so I also wanted things that tasted strong and had crunch. I stopped drinking coffee and alcohol, partly because of the sleep issues but partly because it didn’t taste very good anyway. I drank loads of water on the advice of the oncologist, the nurses, and my acupuncturist, and I think that helped a lot.

During the second cycle, I developed a fever. That was scary. I was warned that if I ever developed a fever, I should call the oncologist immediately, no matter the time of day or day of week. The problem is that your immune response is knocked down by the chemo, so what would normally be a small bacterial infection has the potential to rage out of control. I was lucky. We figured out that the source of infection was a hemorrhoid—the Adriamycin was beginning to chew into my digestive tract, a well-known side effect. (Having to pay constant attention to yet another usually private part of the body just seemed totally unfair by this point.) Oral antibiotics took care of it, which was great because I avoided having to go into the hospital and all the risks entailed with getting heavy-duty IV antibiotic treatment. And we were also able to keep on schedule with the chemo regimen, which is what you hope for.

After that, I became even more careful about avoiding infection, so I avoided public places even more than I had been. I’m very close to a couple of toddlers, and I couldn’t see them for weeks because they were in one of those toddler constant-viral stages, and I really missed them.

The Taxol seems to be much less harsh than the AC regimen, so a lot of these side effects started to ease off a bit by the second 8 weeks, which was certainly a relief.

I was lucky that I didn’t really have mouth sores or some of the other side effects. Some of this is, I think, just because besides the cancer I don’t have any other health issues. Some of it is because my husband took over everything and I don’t have a regular job, so I had the luxury of concentrating on doing what my body needed. I tried to walk every day, and I slept when I needed to, ate when and what I needed to, and went to yoga class when my immune system was ok. I also went to acupuncture every week. I know the science is iffy on that, but I think it helped me with the side effects, even if it was the placebo effect at work (I’m a big fan of the placebo effect). We also both had extraordinary emotional support from many friends and knew we could call lots of people if we needed anything. That’s huge when you’re in this kind of situation.

Currently, I’m still dealing with some minor joint pains, mostly in my wrists and feet. I wasn’t expecting this problem, but my oncologist says it’s not uncommon: they think it’s because your immune system has to re-find its proper level of function, and it can go into overdrive and set up inflammation in the joints. That’s gradually easing off, though.

Most people don’t have it as easy as I did in terms of the medical, financial, and emotional resources I had to draw on. I’m very mindful of that and very grateful.

DXS: You say that you had “few terrible side effects” and a “very cushy home situation.” I’m sure any woman would like to at least be able to experience the latter while dealing with a full-body chemical attack. What were some factors that made it “cushy” that women might be able to talk to their families or caregivers about replicating for them?

LB: As I’ve said, some of it is just circumstance. For example, my kids were old enough to be pretty self-sufficient and old enough to understand what was going on, which meant both that they needed very little from me in terms of care and also that they were less scared than they might have been if they were younger. My husband happens to be both very competent (more competent than I am) around the house and very giving. I live in Cambridge, MA, where I could actually make choices about where I wanted to be treated at each phase and know I’d get excellent, humane care and where none of the facilities I went to was more than about 20 minutes away.

Some things that women might have some control over and that their families might help nudge them toward:

  • Find doctors you trust. Ask a lot of questions and make sure you understand the answers. But don’t get hung up on survival or recurrence statistics. There’s no way to know for sure what your individual outcome will be. Go for the treatment that you and your doctors believe will give you the best chance, and then assume as much as possible that your outcome will be good.
  • Make sure you talk regularly with a social worker or other therapist who specializes in dealing with breast cancer patients. If you have fears or worries that you don’t want to talk to your partner or family about, here’s where you’ll get lots of help.
  • Find compatible friends who have also had cancer to talk to. I had friends who showed me their mastectomy scars, who showed me their reconstructions, who told me about their experiences with chemo and radiation, who told me about what life after treatment was like (is still like decades later…). And none of them told me, “You should…” They all just told me what was hard for them and what worked for them and let me figure out what worked for me. Brilliant.
  • Try to get some exercise even if you don’t feel like it. It was often when I felt least like moving around that a short walk made me feel remarkably better. But I would forget that, so my husband would remind me. Ask someone to walk with you if you’re feeling weak. Getting your circulation going seems to help the body process the chemo drugs and the waste products they create. For the same reason, drink lots of water.
  • Watch funny movies together. Laughter makes a huge difference.
  • Pamper yourself as much as possible. Let people take care of you and help as much as they’re willing. But don’t be afraid to say no to anything that you don’t want or that’s too much.

Family members and caregivers should also take care of themselves by making some time for themselves and talking to social workers or therapists if they feel the need. It’s a big, awful string of events for everyone involved, not just the patient.

DXS: In the midst of all of this, you seem to have written a fascinating book about spiders and their webs. Were you able to work while undergoing your treatments? Were there times that were better than others for attending to work? Could work be a sort of occupational therapy, when it was possible for you to do it, to keep you engaged?

LB: The book had been published about 6 months before my diagnosis. The whole cancer thing really interfered not with the writing, but with my efforts to publicize it. I had started to build toward a series of readings and had to abandon that effort. I had also started a proposal for a new book and had to put that aside. I had one radio interview in the middle of chemo, which was kind of daunting but I knew I couldn’t pass up the opportunity, and when I listen to it now, I can hear my voice sounds kind of shaky. It went well, but I was exhausted afterwards. Also invigorated, though—it made me feel like I hadn’t disappeared into the cancer. I had two streams of writing going on, both of which were therapeutic. I sent email updates about the cancer treatment to a group of friends—that was definitely psychological therapy. I also tried to keep the Spider Silk blog up to date by summarizing related research papers and other spider silk news—that was intellectual therapy. I just worked on them when I felt I wanted to. The second week of every cycle my head was usually reasonably clear.

I don’t really know whether I have chemo brain. I notice a lot of names-and-other-proper-nouns drop. But whether that’s from the chemo per se, or from the hormone changes associated with the chemically induced menopause, or just from emotional overload and intellectual distraction, I don’t know. I find that I’m thinking more clearly week by week.

DXS: What is the plan for your continued follow-up? How long will it last, what is the frequency of visits, sorts of tests, etc.?

LB: I’m on tamoxifen and I’ll be on that for probably two years and then either stay on that or go onto an aromatase inhibitor [Ed. note: these drugs block production of estrogen and are used for estrogen-sensitive cancers.] for another three years. I’ll see one of the cancer doctors every three months for at least a year, I think. They’ll ask me questions and do a physical exam and take blood samples to test for tumor markers. At some point the visits go to every six months.

For self-care, I’m exercising more, trying to lose some weight, and eating even better than I was before.

DXS: Last…if you’re comfortable detailing it…what led to your diagnosis in the first place?

LB: My breast cancer was uncovered by my annual mammogram. I’ve worried about cancer, as I suppose most people do. But I never really worried about breast cancer. My mother has 10 sisters and neither she nor any of them ever had breast cancer. I have about 20 older female cousins—I was 50 when I was diagnosed last year–and as far as I know none of them have had breast cancer. I took birth control pills for less than a year decades ago. Never smoked. Light drinker. Not overweight. Light exerciser. I breastfed both kids, although not for a full year. Never took replacement hormones. Never worked in a dangerous environment. Never had suspicious mammograms before. So on paper, I was at very low risk as far as I can figure out. After I finished intensive treatment, I was tested for BRCA1 and BRCA2 (because mutations there are associated with cancer in both breasts) and no mutations were found. Unless or until some new genetic markers are found and one of them applies to me, I think we’ll never know why I got breast cancer, other than the fact that I’ve lived long enough to get cancer. There was no lump. Even between the suspicious mammogram and ultrasound and the biopsy, none of the doctors examining me could feel a lump or anything irregular. It was a year ago this week that I got the news that the first biopsy was positive. In some ways, because I feel really good now, it’s hard to believe that this year ever happened. But in other ways, the shock of it is still with me and with the whole family. Things are good for now, though, and although I feel very unlucky that this happened in the first place, I feel extremely lucky with the medical care I received and the support I got from family and friends and especially my husband.
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Leslie Brunetta’s articles and essays have appeared in the New York Times, Technology Review, and the Sewanee Review as well as on NPR and elsewhere. She is co-author, with Catherine L. Craig, of Spider Silk: Evolution and 400 Million Years of Spinning, Waiting, Snagging, and Mating (Yale University Press).

I Am Mental Illness: Anorexia–Biting Back

Battling the uninformed, insurance companies, and your own compulsions

[Ed. note: This post is the first in our series, “I Am Mental Illness,” bringing you personal experiences living with a mental illness. It’s likely that no single one of us lives a life untouched by mental illness, our own or that of someone we know. Yet in spite of their high prevalence, these disorders remain stigmatized and undersupported. To learn more about mental illness, you can start with the National Alliance on Mental Illness website. To learn more about anorexia and other eating disorders, you can start with this guidebook from the National Institute of Mental Health. Double X Science has previously featured a post by Harriet Brown describing the effects of family-based treatment for anorexia. Continue reading

Motherhood, war, and attachment: what does it all mean?


The antebellum tales
Scene 1: Two fathers encounter each other at a Boy Scout meeting. After a little conversation, one reveals that his son won’t be playing football because of concerns about head injuries. The other father reveals that he and his son love football, that they spoke with their pediatrician about it, and that their son will continue with football at least into middle school. There’s a bit of wary nodding, and then, back to the Pinewood Derby.

Scene 2: Two mothers meet on a playground. After a little conversation about their toddlers, one mother mentions that she still breastfeeds and practices “attachment parenting,” which is why she has a sling sitting next to her. The other mother mentions that she practiced “cry it out” with her children but that they seem to be doing well and are good sleepers. Then one of the toddlers begins to cry, obviously hurt in some way, and both mothers rush over together to offer assistance.

Scene 3: In the evening, one of these parents might say to a partner, “Can you believe that they’re going to let him play football?” or “I can’t believe they’re still breastfeeding when she’s three!” Sure. They might “judge” or think that’s something that they, as parents, would never do.

But which ones are actually involved in a war?

War. What is it good for?

I can’t answer that question, but I can tell you the definition of ‘war’: “a state of armed conflict between different nations or states or different groups within a nation or state.” Based on this definition and persistent headlines about “Mommy Wars,” you might conclude that a visit to your local playground or a mom’s group outing might require decking yourself out cap-á-pie in Kevlar. But the reality on the ground is different. There is no war. Calling disputes and criticisms and judgments about how other people live “war” is like calling a rowboat on a pond the Titanic. One involves lots of energy release just to navigate relatively placid waters while the other involved a tremendous loss of life in a rough and frigid sea. Big difference.

I’m sure many mothers can attest to the following: You have friends who also are mothers. I bet that for most of us, those friends represent a spectrum of attitudes about parenting, education, religion, Fifty Shades of Grey, recycling, diet, discipline, Oprah, and more. They also probably don’t all dress just like you, talk just like you, have the same level of education as you, same employment, same ambitions, same hair, or same toothpaste. And I bet that for many of us, in our interactions with our friends, we have found ourselves judging everything from why she insists on wearing those shoes to why she lets little Timmy eat Pop Tarts. Yet, despite all of this mental observation and, yes, judging, we still manage to get along, go out to dinner together, meet at one another’s homes, and gab our heads off during play dates.

That’s not a war. That’s life. It’s using our brains as shaped by our cultural understanding and education and rejection or acceptance of things from our own upbringing and talks with medical practitioners and books we’ve read and television shows we’ve watched and, for some of us, Oprah. Not one single friend I have is a cookie cutter representation of me or how I parent. Yet, we are not at war. We are friends. Just because people go online and lay out in black and white the critiques that are in their heads doesn’t mean “war” is afoot. It means expressing the natural human instinct to criticize others in a way that we think argues for Our Way of Doing Things. Online fighting is keeping up with the virtual Joneses. In real life, we are friends with the Joneses, and everyone tacitly understands what’s off limits within the boundaries of that friendship. That’s not war. It’s friendly détente.

The reality doesn’t stop the news media from trying to foment wars, rebellions, and full-on revolutions with provocative online “debates” and, lately, magazine covers. The most recent, from Time, features a slender mother, hand on cocked hip, challenging you with her eyes as she nurses her almost-four-year-old son while he stands on a chair. As Time likely intended, the cover caused an uproar. We’ve lampooned it ourselves (see above).

But the question the cover asks in all caps, “Are you mom enough?” is even more manipulative than the cover because it strikes at the heart of all those unspoken criticisms we think–we know–other women have in their heads about our parenting. What we may not consider is that we, too, are doing the same, and still… we are not actually at war. We’re just women, judging ourselves and other women, just like we’ve done since the dawn of time. It’s called “using your brain.” Inflating our interactions and fairly easily achieved parental philosophy détentes to “war” caricatures us all as shrieking harpies, incapable of backing off and being reasonable.

The real question to ask isn’t “Are you mom enough?” In fact, it’s an empty question because there is no answer. Your parenting may be the most perfect replica of motherhood since the Madonna (the first one), yet you have no idea how that will manifest down the road in terms of who your child is or what your child does. Whether you’re a Grizzly or a Tiger or a Kangaroo or a Panda mother, there is no “enough.”

So, instead of asking you “Are you mom enough?”, in keeping with our goal of bringing women evidence-based science, we’ve looked at some of the research describing what might make a successful parent–child relationship. Yes, the answer is about attachment, but not necessarily of the physical kind. So drop your guilt. Read this when you have time. Meanwhile, do your best to connect with your child, understand your child, and respond appropriately to your child.  

Why? Because that is what attachment is–the basic biological response to a child’s needs. If you’re not a nomad or someone constantly on the move, research suggests that the whole “physically attached to me” thing isn’t really a necessary manifestation of attachment. If you harken to it and your child enjoys it (mine did not) and it works for you without seeming like, well, an albatross around your neck, go for it.

What is attachment?

While attachment as a biological norm among primates has been around as long as primates themselves, humans are more complicated than most primates. We have theories. Attachment theory arose from the observations of a couple of human behaviorists or psychologists (depending on whom you ask), John Bowlby and Mary Ainsworth. Bowlby derived the concept of attachment theory, in which an infant homes in on an attachment figure as a “safe place.” The attachment figure, usually a parent, is the person who responds and is sensitive to the infant’s needs and social overtures. That parent is typically the mother, and disruption of this relationship can have, as most of us probably instinctively know, negative effects.

Bowlby’s early approach involved the mother’s having an understanding of the formational experiences of her own childhood and then translating that to an understanding of her child. He even found that when he talked with parents about their own childhoods in front of their children, the result would be clinical breakthroughs for his patients. As he wrote,

Having once been helped to recognize and recapture the feelings which she herself had as a child and to find that they are accepted tolerantly and understandingly, a mother will become increasingly sympathetic and tolerant toward the same things in her child.

Later studies seem to bear out this observation of a connection to one’s childhood experiences and more connected parenting. For example, mothers who are “insightful” about their children, who seek to understand the motivations of their children’s behavior, positively influence both their own sensitivity and the security of their infant’s attachment to them.  

While Bowlby’s research focused initially on the effects of absolute separation between mother and child, Mary Ainsworth, an eventual colleague of Bowlby, took these ideas of the need for maternal input a step further. Her work suggested to her that young children live in a world of dual and competing urges: to feel safe and to be independent. An attachment figure, a safe person, is for children an anchor that keeps them from become unmoored even as they explore the unknown waters of life. Without that security backing them up, a child can feel always unmoored and directionless, with no one to trust for security.

Although he was considered an anti-Freudian rebel, Bowlby had a penchant for Freudian language like “superego” and referred to the mother as the “psychic organizer.” Yet his conclusions about the mother–child bond resonate with their plain language:

The infant and young child should experience a warm, intimate, and continuous relationship with his mother (or permanent mother substitute) in which both find satisfaction and enjoyment.

You know, normal biological stuff. As a side note, he was intrigued by the fact that social bonds between mother and offspring in some species weren’t necessarily tied to feeding, an observation worth keeping in mind if you have concerns about not being able to breastfeed.

The big shift here in talking about the mother–child relationship was that Bowlby was proposing that this connection wasn’t some Freudian libidinous communion between mother and child but instead a healthy foundation of a trust relationship that could healthily continue into the child’s adulthood.

Ainsworth carried these ideas to specifics, noting in the course of her observations of various groups how valuable a mother’s sensitivity to her child’s behaviors were in establishing attachment. In her most famous study, the “Baltimore study” [PDF], she monitored 26 families with new babies. She found that “maternal responsiveness” in the context of crying, feeding, playing, and reciprocating seemed to have a powerful influence on how much a baby cried in later months, although some later studies dispute specific influences on crying frequencies.

Ainsworth also introduced the “Strange Situation” lab test, which seems to have freaked people out when it first entered the research scene. In this test, over the course of 20 minutes, a one-year-old baby is in a room full toys, first with its mother, then with mother and a strange woman, then with the stranger only (briefly), then with the mother, and then alone before the stranger and then the mother return. The most interesting findings of the study came from when the mother returned after her first absence, having left the baby alone in the room with a stranger. Some babies seemed quite angry, wanting to be with their mothers but expressing unhappiness with her at the same time and physically rejecting her.

From her observations during the Strange Situation, Ainsworth identified three types of attachment. The first was “Secure,” which, as its name implies, suggested an infant secure and comfortable with an attachment figure, a person with whom the infant actively seeks to interact. Then there’s the insecure–avoidant attachment type, in which an infant clearly is not interested in being near or interacting with the attachment figure. Most complex seems to be the insecure–resistant type, and the ambivalence of the term reflects the disconnected behavior the infant shows, seeming to want to be near the attachment figure but also resisting, as some of the unhappy infants described above behaved in the Strange Situation.

Within these types are now embedded various subtypes, including a disorganized–disoriented type in which the infant shows “odd” and chaotic behavior that seems to have no distinct pattern related to the attachment figure.

As you read this, you may be wondering, “What kind of attachment do my child and I have?” If you’re sciencey, you may fleetingly even have pondered conducting your own Strange Situation en famille to see what your child does. I understand the impulse. But let’s read on.

What are the benefits of attachment?

Mothers who are sensitive to their children’s cues and respond in ways that are mutually satisfactory to both parties may be doing their children a lifetime of favors, in addition to the parental benefit of a possibly less-likely-to-cry child. For example, a study of almost 1300 families looked at levels of cortisol, the “stress” hormone, in six-month-old infants and its association with maternal sensitivity to cues and found lower levels in infants who had “more sensitive” mothers.

Our understanding of attachment and its importance to infant development can help in other contexts. We can apply this understanding to, for example, help adolescent mothers establish the “secure” level of attachment with their infants. It’s also possibly useful in helping women who are battling substance abuse to still establish a secure attachment with their children.

On a more individual level, it might help in other ways. For example, if you want your child to show less resistance during “clean-up” activities, establishing “secure attachment” may be your ticket to a better-looking playroom.

More seriously, another study has found that even the way a mother applies sensitivity can be relevant. Using the beautiful-if-technical term ‘dyads’ to refer to the mother–child pair, this study included maternal reports of infant temperament and observations of maternal sensitivity to both infant distress and “non-distress.” Further, the authors assessed the children behaviorally at ages 24 and 36 months for social competence, behavioral problems, and typicality of emotional expression. They found that a mother’s sensitivity to an infant’s distress behaviors was linked to fewer behavioral problems and greater social competence in toddlerhood. Even more intriguing, the child’s temperament played a role: for “temperamentally reactive” infants, a mother’s sensitivity to distress was linked to less dysregulation of the child’s emotional expression in toddlerhood. 


And that takes me to the child, the partner in the “dyad”

You’re not the only person involved in attachment. As these studies frequently note, you are involved in a “dyad.” The other member of that dyad is the child. As much as we’d like to think that we can lock down various aspects of temperament or expression simply by forcing it with our totally excellent attachment skills, the child in your dyad is a person, too, who arrived with a bit of baggage of her own.

And like the study described above, the child’s temperament is a key player in the outcome of the attachment tango. Another study noted that multiple factors influence “attachment quality.” Yes, maternal sensitivity is one, but a child’s native coping behaviors and temperament also seem to be involved. So, there you have it. If you’re feeling like a parental failure, science suggests you can quietly lay at least some of the blame on the Other in your dyad–your child. Or, you could acknowledge that we’re all human and this is just part of our learning experience together.

What does attachment look like, anyway?

Dr. William Sears took the concept of attachment and its association with maternal sensitivity to a child’s cues and security and… wrote a book that literally translated attachment as a physical as well as emotional connection. This extension of attachment–which Sears appends to every aspect of parenting, from pregnancy to feeding to sleeping–has become in the minds of some parents a prescriptive way of doing things with benefits that exclude all other parenting approaches or “philosophies.” It also involves the concept of “baby wearing,” which always brings up strange images in my mind and certainly takes outré fashion to a whole new level. In reality, it’s just a way people have carried babies for a long time in the absence of other easy modes of transport.

When I was pregnant with our first child and still blissfully ignorant about how little control parents have over anything, I read Sears’ book about attachment parenting. Some of it is common-sense, broadly applicable parenting advice: respond to your child’s needs. Some of it is simply downright impossible for some parent–child dyads, and much of it is based on the presumption that human infants in general will benefit from a one-size-fits-all sling of attachment parenting, although interpretations of the starry-eyed faithful emphasize that more than Sears does.

Because much of what Sears wrote resonated with me, we did some chimeric version of attachment parenting–or, we tried. The thing is, as I noted above, the infant has some say in these things as well. Our oldest child, who is autistic, was highly resistant to being physically attached much of the time. He didn’t want to sleep with us past age four months, and he showed little interest in aspects of attachment parenting like “nurturing touch,” which to him was seemingly more akin to “taser touch.” We ultimately had three sons, and in the end, they all preferred to sleep alone, each at an earlier and earlier age. The first two self-weaned before age one because apparently, the distractions of the sensory world around them were far more interesting than the same boring old boob they kept seeing immediately in front of their faces. Our third was unable to breastfeed at all.

So, like all parents do, we punted, in spite of our best laid plans and intentions. Our hybrid of “attachment parenting” could better be translated into “sensitivity parenting,” because our primary focus, as we punted and punted and punted our way through the years, was shifting our responses based on what our children seemed to need and what motivated their behaviors. Thus, while our oldest declined to sleep with us according to the attachment parenting commandment, he got to sleep with a boiled egg because that’s what he wanted. Try to beat that, folks, and sure, bring on the judging.

The Double X Science
Sensitivity Parenting (TM) cheat sheet.

What does “sensitive” mean?

And finally, the nitty-gritty bullet list you’ve been waiting for. If attachment doesn’t mean slinging your child to your body until you’re lumbar gives out or the child receives a high-school diploma, and parenting is, indeed, one compromise after another based on the exigencies of the moment, what consistent tenets can you practice that meet the now 60-year-old concept of “secure” attachment between mother and child, father and child, or mother or father figure and child? We are Double X Science, here to bring you evidence-based information, and that means lists. The below list is an aggregate of various research findings we’ve identified that seem reasonable and reasonably supported. We’ve also provided our usual handy quick guide for parents in a hurry.
  • Plan ahead. We know that life is what happens while you’re planning things, but… life does happen, and plans can at least serve as a loose guide to navigation. So, plan that you will be a parent who is sensitive to your child’s needs and will work to recognize them.
  • Practice emotion detection. Work on that. It doesn’t come easily to everyone because the past is prologue to what we’re capable of in the present. Ask yourself deliberately what your child’s emotion is communicating because behavior is communication. Be the grownup, even if sometimes, the wailing makes you want your mommy. As one study I found notes, “Crying is an aversive behavior.” Yes, maybe it makes you want to cover your ears and run away screaming. But you’re the grownup with the analytical tools at hand to ask “Why” and seek the answer.
  • Have infant-oriented goals. If you tend to orient your goals in your parent–child dyad toward a child-related benefit (relieve distress) rather than toward a parent-oriented goal (fitting your schedule in some way), research suggests that your dyad will be a much calmer and better mutually adapted dyad.
  • Trust yourself and keep trying. If your efforts to read your child’s feelings or respond to your child’s needs don’t work right away, don’t give up, don’t read Time magazine covers, and don’t listen to that little voice in your head saying you’re a bad parent or the voice in other people’s heads screaming that at you. Just keep trying. It’s all any of us can do, and we’re all going to screw this up here and there.
  • Practice behaviors that are supportive of an infant’s sensory needs. For example, positive inputs like a warm voice and smiling are considered more effective than a harsh voice or being physically intrusive. Put yourself in your child’s place and ask, How would that feel? That’s called empathy. 
  • Engage in reciprocation. Imitating back your infant’s voice or faces, or showing joint attention–all forms of joint engagement–are ways of telling an infant or young child that yes, you are the anchor here, the one to trust, and really good time, to boot. Allowing this type of attention to persist as long as the infant chooses rather than shifting away from it quickly is associated with making the child comfortable with independence and learning to regulate behaviors.  
  • Talk to your child. We are generally a chatty species, but we also need to learn to chat. “Rich language input” is important in early child development beginning with that early imitation of your infant’s vocalizations.
Lather, rinse, repeat, adjusting dosage as necessary based on age, weight, developmental status, nanosecond-rate changes in family dynamics and emotional conditions, the teen years, and whether or not you have access to chocolate. See? This stuff is easy.

                                                          

Finally

As you read these lists and about research on attachment, you’ll see words like “secure” and “warm” and “intimate” and “safe.” Are you doing this for your child or doing your best to do it? Then you are, indeed, mom enough, whether you wear your baby or those shoes or both. That doesn’t mean that when you tell other women the specifics of your parenting tactics, they won’t secretly be criticizing you. Sure, we’ll all do that. And then a toddler will cry, we’ll drop it, and move on to mutually compatible things.

Yes, if we’re being honest, it makes most of us feel better to think that somehow, in some way, we’re kicking someone else’s ass in the parenting department. Unfortunately for that lowly human instinct, we’re all parenting unique individuals, and while we may indeed kick ass uniquely for them, our techniques simply won’t extend to all other children. It’s not a war. It’s human… humans raising other humans. Not one thing we do, one philosophy we follow, will guarantee the outcome we intend. We don’t even need science, for once, to tell us that.


By Emily Willingham, DXS managing editor

These views are the opinion of the author and do not necessarily either reflect or disagree with those of the
DXS editorial team. 

XX Tech Report: Rapid detection and treatment for deadly blood infections

Methicillin-resistant Staphylococcus aureus (green), a frequent agent
in blood infections, under attack from a white blood cell.
Photo: Wikimedia Commons, public domain.

By Jeffrey Perkel, Ph.D., DXS technology editor


[Ed. note: Introducing our new technology editor, Jeffrey Perkel

Jeffrey, a recovering scientist, has always had a passion for the technology and the gadgetry of science. He has been a scientific writer and editor since 2000, when he left academia to join the staff of The Scientist magazine as a Senior Editor for Technology. Before that, he studied transcription factor biology at the University of Pennsylvania and Harvard Medical School -- training that, surprisingly, has little application in the real world. In 2006, he and his family headed west to Pocatello, Idaho, and has been a freelance writer ever since. You can see why Double X Science is thrilled to have him on the team! You can find Jeffrey at his Website or on Twitter at @j_perkel. Welcome, Jeff!]

A story published earlier this week on NBCNews.com both alarmed me and piqued my interest.

It alarmed me because, well, I don’t like microbes much (despite, or perhaps because of my background in microbiology), and this article is about people getting very, very sick from sepsis (aka septicemia or bacteremia, an infection of the blood), which presents itself as a whole-body inflammatory response and a significantly increased risk of organ failure. It is an important area of microbiology because sepsis results from a bacterial infection, and the article says that 20% to 50% of infected patients die from sepsis.

My interest was piqued, however, because the piece goes on to talk about how a new genetic testing device that the US Food and Drug Administration approved in June could possibly help rein in the disease. That’s because it can reduce the time for diagnosing sepsis from days to hours. And when it comes to sepsis, time is critical.

Sepsis is confirmed by testing for the presence of specific types of bacteria in blood samples from patients and identifying what bacteria, if any, are in the circulation. If they are present, the researchers need to find out if the bugs are resistant to any antibiotic. Unfortunately, all that takes time – time the patient often doesn’t have. As the news story notes,

A 2010 study in the journal Critical Care Medicine found that for every hour of delay in administering antibiotics, mortality rose by 7.6 percent.

The new testing system is called the Verigene Gram-positive Blood Culture Test, marketed by Nanosphere Inc., a nanotechnology company in Northbrook, Ill. NBCNews.com describes the system:

About the size of a small microwave oven, the Verigene Gram-positive Blood Culture Nucleic Acid Test is the first system approved by the FDA to identify quickly certain bacteria responsible for bloodstream infections — and whether some are resistant to the top drugs used against them.

 

Instead of the three days required for a traditional blood culture panel, results from the Verigene test come back within three hours, identifying up to a dozen specific bacteria known to cause sepsis, including strains of Staphylococcus, Streptococcus, Enterococcus and Listeria.

Of particular importance, the system can catch some particularly nasty bugs, methicillin-resistant Staphylococcus aureus (MRSA; see Maryn McKenna’s excellent Superbug if you really want to terrify yourself on this subject) and vancomycin-resistant Enterococci.

In its press release announcing the Verigene test’s approval, the FDA said that, compared to standard microbiology methods, the Verigene test results “were consistent with traditional blood culture methods in 93 percent to 100 percent of the comparisons.”

The test is remarkably simple, and even automated, requiring a dedicated sample processing instrument and a reader from Nanosphere.

The patient sample is added to a glass slide covered with capture signals that recognize DNA from sepsis-causing bacteria. The capture signals are placed on the glass slide in a defined order, each programmed to recognize only one strain of bacteria. This uniform order helps scientists identify which strain of bacteria, if any, is responsible for the infection. If the patient blood sample contains bacteria, the signals on the glass slide will capture its DNA, and the special scanner and software can detect this capture.   

What sets the Verigene test apart from the previously available tests for sepsis is precisely how they do the detecting. The test adds sub-microscopic gold balls, called gold nanoparticles, to the glass slide. These gold nanoparticles are studded with more capture signals. When bacteria match up with the same specific capture signals, the nanoparticles will attach to that area. This ball gives scientists the ability to more rapidly detect which type of bacteria, if any, is present, and thus select the right course of antibiotic treatment.

The reaction is developed by coating the gold nanoparticles with silver, a process called signal amplification, which increases sensitivity up to 100,000 times, and then hitting it with light. Those spots containing the nanoparticles scatter light; those without it, do not. The effect is so strong, the original paper detected it using a “conventional flatbed scanner,” like something you’d have in your home office.

According to Nanosphere’s website, the whole thing requires less than five minutes’ worth of hands-on time, plus 2.5 hours to get the result. That falls within the necessary time frame to diagnose sepsis and begin life-saving antibiotic therapy.

Hopefully, this is a technology that neither your family nor mine will ever need. But it’s nice to know it’s there. And now, you know how it works.

(If you’re interested in the research paper that led to this test, from company cofounders Robert Letsinger and Chad Mirkin, both of Northwestern University, you can read it here.)