Talking With Kids About Senator Kennedy's Tumor

With the startling news yesterday that Senator Ted Kennedy has a very malignant brain tumor, cancer is on the minds of most people today, including our kids. Very likely your kids will have questions, as mine did today at breakfast, and being ready with information will help you enormously in finding the right words.

Keep in mind that cancer has a way of striking close to home at the most unexpected of times. We learned that a few years ago when my dad was diagnosed out of the blue with prostate cancer. He's doing great now but that diagnosis and treatment period was very challenging. I turned to one of the top experts in child psychiatry, Dr. Paula Raush, to figure out how to talk to my kids and that conversation yielded an article that so many people told me was helpful to them that I want to reprint it for you today:

Lessons From The Movies

Disney movies have a wonderful way of providing something for everyone but are sometimes criticized for content that may be too overwhelming for children – parents dying, natural disasters, and sickness in a friend or loved one. I was particularly sensitive to these very issues when my children were younger and would simply fast-forward through “questionable” scenes. Eventually my kids started insisting on watching movies without interruptions regardless of content. What’s interesting is my kids did fine with the movies we felt were “too intense” but had a tough time with movies we assumed would be more low-keyed. For example, in Bambi, my oldest daughter figured out at age 5 that Bambi’s mother was now gone but told us that Bambi would be ok because his daddy and Flower were around to help. In contrast, when my youngest daughter was 3 she cried uncontrollably in Elmo in Grouchland because Elmo’s favorite blanket was lost. She had a much loved blanket at the time called “kiki” which she still has. The parallel to her life was just too intense for her whereas my older daughter was more able to process a tough topic because her life was not at all like Bambi’s – her mom and dad were right there watching the movie with her.

We could not have predicted these reactions if we tried – they were completely opposite of what we anticipated. And, according to child psychiatry experts, my daughter’s reactions were not only predictable but essential for their development. According to Paula Rauch, MD, Director of Massachusetts General Hospital’s Parenting At a Challenging Time (PACT) Program, “rather than "protecting" children from loss related content, think of them as opportunities. It is not protective to exclude children from the reality that people get sick, and people and animals die. When parents do "protect" their child, they ensure that a child's first experience with loss will be more overwhelming. Having a pet die, hearing about a friend's parent dying, going to a family member's funeral are sad experiences but they are also opportunities to talk about feelings and observations and hear a child's questions. When the experiences are less overwhelming than a close family member's death, the parents are likely to be most emotionally available to hear a child's full experience and a child to feel safe enough to really talk about the loss and the ceremonies associated with it or the treatment that was involved.”

Additionally, Dr. Rauch encouraged families to consider the PACT’s “lessons learned” to help guide them through challenging conversations with children on illness and death. While originally designed for use by cancer patient’s and families, these tips are applicable to most other situations that put stress on a family and on children such as divorce, natural disasters, terrorism and war:

Euphemisms lead to confusion.
Name the illness, e.g. "Breast Cancer," not "lump" or "boo-boo". Facilitate honest communication.

The worst way to hear news is to overhear it.
Describe what is happening and what to expect.

Welcome all questions.
Learn the settings that work best for each child, e.g. in the car, at the kitchen table while a parent is cooking, at bedtime etc.

Figure out what the real question is.
"What got you wondering about ...?" The real question is often easier to answer than the imagined one.

Questions do not always require immediate answers.
"That is such a good question. I'll need to think about it, or discuss with my (doctor, nurse, social worker) and get back to you."

Children shouldn't worry alone.
"Bring what you hear back home to us for accuracy". Sometimes people say unhelpful things with the kindest intentions.

Review your child's support system.
Assign tasks, or appoint a person for each child.
Keep the channels of communication open with key caregivers.

Maintain the child's usual schedule.
Try to preserve some time for kids to be kids.

Keep a pulse on each child's experience.
Find reflective times to check in about hearing too much/too little. "What is it like having ..."

Respect a child's wish not to talk.
Non-talkers need "News Bulletins". There is information that the child needs to hear, but may not want to discuss.

Bring support people for hospital visits.
Adjust visit lengths to the comfort of the child.

Learning to handle bitter life moments is essential for savoring and appreciating the sweet. Disney’s use of humor and grace to portray the more fragile and difficult aspects of life provides us with a blueprint for managing difficult aspects of our own lives. So, next time you feel the urge to fast forward through a “tough” scene in a show, sit on the remote, hand out tissue, and allow your family to experience the moment together. As often as art imitates life, life will eventually imitate art - someday that experience will help all of you enormously.

Here are some additional web resources on talking with kids about cancer:

Dana Farber Talking With Kids About Cancer
MD Anderson Talking With Kids About Cancer
Dana Farber What Children Want To Know
Dana Farber Explaining Treatment To Your Kids

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Health Screening Means Asking Tough Questions

This article from the NYT yesterday raises some important health screening issues. The headline actually says it all: "Doctors can play crucial role in cases of domestic violence."

While it sounds like common sense and perhaps a bit obvious, the truth is too many doctors don't ask the tough questions. Part of the issue is time. The typical office visit doesn't allow for much time to do more than address the question at hand. The other issue is comfort level. Many physicians are uncomfortable or uncertain about how to raise these very difficult and sensitive issues and many patients are scarred and unsure how to discuss the violence in their lives.

But, part of the issue are assumptions that if a woman looks fine, she is fine. And, perhaps assumptions that domestic violence only occurs to "certain people". What people and physicians have to realize is this is a problem that crosses all socio-economic lines. Looking well put together doesn't mean there isn't some horrible secret being kept. Trying to act like everything is ok doesn't mean that everything is ok. And, if doctors see bruises and other physical signs of something wrong, it is definitely not ok to not ask about those bruises in whoever the bruises are on regardless of their profession or bank account.

Asking about domestic violence is the only way to help women in trouble find a safe haven and help her get help. But, it won't happen in one visit or by asking just once. As Dr. Nicolaidis said to the NYT:

“The reasons to ask...are to educate a patient and to open the door so that the patient knows she can come to you. It’s part of developing a real relationship with your patient. Over time, you might be able to uncover the abuse and improve her safety, but you also might better understand why she’s having her symptoms and how to better approach her self-management of her illness.”

So, we have some work to do in the healthcare system and have to learn to better address these tough issues. And, it can't just fall on internists or Ob/Gyns. Pediatricians see moms all the time, yet how often do we ask them about their safety? As part of caring for a family, we need to find better ways for really asking about family health and safety of family members is a gigantic part of that. To cover any ground, the first step is to shed the assumption that if a situation looks ok, it is ok.

It won't be easy to figure out how to ask these tough questions, but we owe it to the families we care for to find a way.

Play Ball...but do it safely!

Youth sports safety is the the buzz of the week on the web. A few hot topics for you to tune in to:

First, on Vicky and Jen What Really Matters, I talked with Vicky and Jen about youth sports and the myriad of ways to keep your kids safe on the playing fields. In addition to listening to the podcast, check out all the resources on the podcast page on all the topics we ended up discussing.

Over on MomLogic, I gave my 2cents on girls and knee injuries after reading the New York Times Article, The Uneven Playing Field, last weekend. Are girls safe in today’s youth sports culture? I’m wish I could say “yes” at the moment, but I do have some suggestions that will help you keep your daughters safe while the system is in flux.

Finally, an interesting sports story this week that all parents of kids in youth sports should read, and heed! Two top Justine Henin just retired from tennis at age 25, and a day later Annika Sorenstam retired from golf. Why the sudden course change for these women? Burnout - and a desire for a life beyond sports. This quote from Henin told to the AP sports writer is very telling: “Winning Wimbledon would not make me happier than I am". Just goes to show that winning truly isn't everything and what we must strive for with our kids is balance and fun, especially at young ages. In other words, over-specialization at young ages is over-rated. What's the point if it can't be enjoyed at the levels you are trying to achieve.

Images:
Vicky and Jen
MomLogic

Today is International MPS Awareness Day

Today is MPS awareness day. MPS is a rare genetic disease that occurs in 1 out of every 25,000 live births. MPS stands for mucopolysaccharidoses and is actually “a family of rare, potentially fatal genetic diseases that occur because of the inability to produce specific enzymes.” It is one of the lysosomal storage diseases and there are actually 7 types. Some of the names you may be familiar with: Hurler Syndrome (type I), Hunter Syndrome (type 2). The symptoms depend on the type and the extent of that type. So, that creates a challenge in diagnosis. According to the National MPS Society, typical symptoms include: “mental retardation, cloudy corneas, short stature, stiff joints, speech and hearing impairment, chronic runny nose, hernia, heart disease, hyperactivity, depression, pain and a dramatically shortened life span”. There is no cure but there are enzyme replacement treatments available. You can find more information about MPS and treatment options here.

I like to help spread the word about conditions like MPS for a number of reasons. First, awareness is key to fund raising which is so crucial to advancing science and helping with treatment options and improving quality of life. Equally important, however, awareness is how we create an empathetic society so we all learn to live together and help each other out no matter what. I know this sounds lofty but we've become a very isolated society in many ways and our kids don't always know how to deal with "different". Awareness helps make "different" less frightening. Awareness helps kids want to help other kids, no matter what. And, those kids will grow up to become adults who will want to help other adults, no matter what. So, that's why I like to spread the word about rare conditions.

Physicians, click here to join the search for a cure and get more information. Rare disorders require us all to hit the books and lean on experts to help us learn the symptoms to be on the look out for. Most of us have the radar of when something is amiss. Sometimes we know that a patient has a syndrome but then become lost in the maze of syndromes and don’t know where to go next. Resources such as those from the MPS Society can help us get people to the right care quicker because we’ll better recognize those patients as possible MPS patients.

So, before you move on and say “this doesn’t impact me”, take a moment to realize that it does. We all live in the same world. Today the MPS Community needs a boost but tomorrow something you are doing may need a boost. What goes around does come around when it comes to community awareness, empathy, and humanity.

The Food Pyramid Gets A Facelift

When the "new" food pyramid was released a few years ago, I have to admit, I found it difficult to sell it to people, especially families. It was hard to follow, bulky and contained too much information. It's not that the suggestions were not reasonable, they were just too much to take in at once or incorporate into today's busy lifestyles.

Turns out I'm not alone in my concern and confusion over the current FDA food pyramid. White Coat Notes today posted that Harvard's School of Public Health developed a new food pyramid that strives to clear up the confusion and allow us to finally eat, exercise and live healthier and happier lives. Check it out:


(click for larger image)

Harvard's new food pyramid isn't just a repackaging of the old. While the pyramid looks the same, it also clearly recognizes that people, real people, eat real food. Their pyramid includes wine, for example. While on the outskirts of the pyramid, it is there to remind us that wine is ok in moderation. Placing it near the pyramid is a visual statement that the researchers recognize that real people need a way to incorporate some things that may not be so healthy, like wine.

The quick tips on the right side bar are also indicators of a new, real-life philosophy. The tip that caught my attention was number 2:

"Focus on food, not grams. The Healthy Eating Pyramid doesn’t worry about specific servings or grams of food, so neither should you. It’s a simple, general guide to how you should eat when you eat."

Amazing! We can finally stop worrying about labels and figuring out what those grams really mean and just eat while learning to do so in moderation with a focus on serving size and a balanced diet.

The remainder of those tips, by the way, are similarly phrased with an emphasis on real-world living. None of these tips are old but the emphasis is new. Here's another example:

"Take a multivitamin, and maybe have a drink. Taking a multivitamin can be a good nutrition insurance policy. Moderate drinking for many people can have real health benefits, but it's not for everyone. Those who don’t drink shouldn’t feel that they need to start. For more information, read "Alcohol: Balancing Risks and Benefits.""

This one is also great:

"Cut way back on American staples. Red meat, refined grains, potatoes, sugary drinks, and salty snacks are part of American culture, but they’re also really unhealthy. Go for a plant-based diet rich in non-starchy vegetables, fruits, and whole grains. And if you eat meat, fish and poultry are the best choices."

Note the language - just plain and down to earth. You feel like you are being talked to without some heavy guilt trip. This is exactly what we all need!!

The other tips, you already know: exercise, eat fruits and veggies, watch the fat.

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In the end, old fashioned healthy eating, moderation and exercise should be all of our guiding principles and what we should be teaching our kids. And, now we have a more practical road map to use to attempt to do that.

Explaining Teen Stars' Wild Behavior

I totally agree with the New York Times that this has been a tough media year for teen stars. And, it has put us parents of tweens and young teens in a tough spot. My 10 year old didn't actually catch wind about those new Miley pictures until yesterday. And, she didn't see one until this morning when she walked behind me as I was surfing the web for fodder for this blog post. Her reaction yesterday was "she's just a kid? How could she really know what she was doing? I'm sure her parents gave it the ok." And, today? "Why would her parents let THAT get out? Doesn't even look like her. Weird."

Ever since those new Miley pictures were released, I just can't shake a comment that Barbara Walters said on Good Morning America when she was filling in recently and this topic came up. Barbara basically said, and this is a paraphrase: "Her parents are involved and control everything in that girl's life. Don't think for a minute they didn't know what they were doing or what they would get from this photographer." But, that was the jist and I think it is the most realistic and accurate explanation yet. Miley's parents control every aspect of her career and her mother, in particular, is with her every step of the way. The blame here is on the parents. That is where it begins and ends.

Why not blame the photographer? She was hired and just doing a job. I can't push this argument too far.

Why not blame Miley? Unlike Jamie Lynn, Miley didn't ask for this and is too young to know the implications of these pictures. But, in even a few years she will and I bet she won't be very happy with the people who are to blame: her parents.

I know this is strong but it has to be. Parents have to pull back sometimes and stop using their kids as posters for something more. Whether your kids are local stars or big stage stars, be sure you are really watching out for your child's best interests. And, if people around you are telling you to pull back, pull back. That could have saved David on Idol some pain, huh?

Parents are supposed to protect their kids so the tough part is helping our kids understand how parents of their teen starts make decisions that are not so great. I took the approach that it is hard sometimes to be a parent and a business agent and sometimes what looks like a good decision ends up not to be. I focused on the make believe of Hollywood and how easy it is in that life to get carried away. I focus on the fact that even when bad decisions are made, parents still love their kids.

In the end, we all have to keep that in mind. Even over the top parents love their kids. So, while we will all be appalled and may not understand decision that lead to photos like Miley had taken, we can at least all agree that her parents do love her.

How's my daughter with the situation now? She's fine. Happily listening to Miley songs and watching Hannah Montanah episodes. Kids are very accepting of mistakes and explanations and very forgiving of adults who make them. That's the blessing and curse of childhood. I just hope that Miley has learned enough of a lesson here to forgive her parents but to keep an eye out for the next decision they make on her behalf.

Dr. Gwenn On NECN: When To Immunize, Measles and MRSA

Yesterday on NECN's HealthWeek, Karen Swensen and I talked about the recent CDC study that showed that only 28% of kids were properly immunized. With the recent rise in Measles, this study certainly has us all asking a lot of questions. Check out what I had to say as well as what you can do to keep your kids free of MRSA, another infectious disease emerging more and more in schools.

Tune in next month for my next Medical Masters on NECN.

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