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A “Pointless” Update on the Mom With 8 Months to Live

Wednesday, April 8th, 2015

Last November we featured a guest post from a mom named Tori Tomalia: “3 Kids, 6 Lessons, and 8 Months to Live:  A Lung Cancer Story.” In May 2013, Tori, of Ann Arbor, Michigan, was diagnosed with stage 4 lung cancer. At the time, she had a 4-year-old son and twin daughters who weren’t yet 2. Through extraordinary fortune, her aggressive treatment plan has worked for nearly two years.

But when I got an email from Tori a few weeks ago with an update, I was almost scared to read it. Instead, I found myself laughing out loud (see the image at right). Tori and her husband Jason have made a huge decision: They’re opening an improv theatre and brewery. See, they’ve both been involved in the theatre for a long time; they’d even talked about opening their own space back on their very first date. Meanwhile, Jason has gotten into microbrewing in recent years, and they’ve decided to join those two passions. As Tori put it, “We realized that if there was ever a time to pursue our dream of building something together, the time was NOW.”

The name comes out of a particularly rotten day Tori was having. Chemo was getting her down in a major way, and she asked Jason the question I can imagine goes through everyone’s mind when they’re enduring this kind of all-consuming, exhausting, painful treatment: “What if I go through all this, and it still just ends up awful? What’s the point? Everything just feels so pointless.” Jason responded, “Okay, maybe it is all pointless…. So let’s do this. Let’s open a pointless brewery and theatre, and make our pointless dreams come true.”

Tori explains, “It’s the perfect name. How often do we waste our days doing what we are supposed to do, looking the way we are supposed to look, saying what we are supposed to say. You get up, rush to work, drink coffee to stay awake, work hard to get ahead, stress over deadlines, all for what? What is the point of that? If you knew your time were limited, wouldn’t you spend it doing things you love, and spending time with the important people in your life? When it comes down to it, all that matters is the people you get to meet, spending time with the ones you love, and bringing joy to the world. Everything else is pointless.”
It’s one of the most inspiring, life-affirming reactions to a horrible situation I’ve heard of. I was so excited when I learned that Pointless Brewery & Theatre is on Kickstarter, because I bet lots of you feel the same way I did: Sign me up! If you’d like to help Tori and Jason make their pointless dreams come true, consider donating this week–in another happy twist, a kind donor has committed to match every pledge that comes in by this Friday (up to $5,000). They need to raise a total of $50,000 and as of right now they’re at $31,409. Any amount will help, truly —  and if they don’t get to $50,000, all donations will be refunded. Please take a minute to watch their funny, emotional video here (it’s different from the video below) and I guarantee you’ll want to chip in.
Kara Corridan is the health director at Parents and a mom of two daughters.

One Family's Experience with Childhood Cancer
One Family's Experience with Childhood Cancer
One Family's Experience with Childhood Cancer

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Dry Nights, At Last! What Finally Worked for My Bedwetter

Tuesday, March 24th, 2015

Both of my children were potty trained by age 3–during the day, at least. My older daughter had three dry nights in a row a few months before she turned 5, so we put her in underwear, and to this date she’s never had an accident. (She’s 9 now.) When my younger daughter’s 5th birthday came and went with her still in diapers at bedtime, I didn’t think much of it–different kid, different timetable. Her pediatrician wasn’t concerned, either. But then Lila’s 6th birthday passed, and she told me she was too embarrassed to have friends over in case they saw her Pullups in her closet. Shortly after, I heard a discouraging stat: Only 15% of bedwetters become dry on their own a year later. So if we waited for things to get better, it could literally take years. It was time to deal with this.

First, I wanted to rule out any medical causes for her bedwetting. (Excessive urination is a common red flag of diabetes, for example.) Once we learned that everything was normal, we focused on bedwetting treatment options. Research shows that medication is not as effective as a bed alarm. And age 6 is a good time to start using an alarm; younger children don’t respond very well. So my husband and I geared ourselves up for what an alarm would mean for all of us. Put simply: bad sleep, and a lot of laundry, for the next several months.

We had one huge advantage, which was a willing child. Lila was totally motivated to stop bedwetting, and she found the idea of an alarm sort of fascinating. We got the kind that has two parts: a sensor that clips to her underwear and a transmitter that attaches to the shoulder of her pajama top, beeping loudly when the sensor gets wet. (We also invested in a super-absorbent pad that we attached to the top of her mattress and always had a pile of clean sheets and blankets waiting on the floor.) We explained that when the alarm went off, we’d turn it off and help her to the bathroom. This was a key step, having her go to the toilet even if her bladder was completely empty. The hope was that she’d eventually turn off the alarm when she was wet and head to the bathroom on her own. But the goal was for the alarm to train her reflex system to tell her when her bladder was full and send her to the bathroom before she urinated.

I can’t say we saw much success. For the first several weeks, that dreaded alarm woke me and my husband–though not Lila–every night, sometimes twice. I tracked each night in a simple chart that came with the bed alarm; I didn’t see much of a pattern to her accidents. Sometimes they happened before midnight, other times they weren’t until 4 or 5 in the morning. We tried limiting how much water she drank, and woke her to use the bathroom before we went to bed, so there’d ostensibly be less urine in her bladder for the night. But experts don’t encourage that because while it does cut back on accidents, it doesn’t help the brain and bladder communicate with each other.

Then, through the good fortune of my job here, I met a father-son team of bedwetting experts in town from Israel. Jacob Sagie, Ph.D., and his son, Tal Sagie, M.A., have treated more than 30,000 bedwetters in the past three decades. They’ve now created a new program called TheraPee. It requires an alarm (though a different kind—I’ll explain), but what sets it apart is the online component.

The Sagies knew that they’d been successful with their patients, who ranged in age from 4 to 35, because they were able to meet face to face. With TheraPee, they’re replicating the in-person experience in the form of hundreds of brief video clips tailored to your child’s situation. Here’s how it works: You initially provide information about your child, including age, gender, duration of bedwetting, and more. Based on that data, the appropriate video will play, starring Tal, who speaks directly to your child, welcoming her to the program. (That’s him in the photo illustration above.) Lila looked at me in amazement and said, “Is he really talking to me?” She was enthralled. This is the point, says Tal: “The soul of the treatment is the therapist. His ability to establish a trusting relationship with your child, knowing how to motivate him, and always giving him hope and helping him believe in himself, are the key elements for success.” This is why the videos rely heavily on cognitive behavioral therapy principles. For example, your child will watch a clip that incorporates modeling by showing thank-you notes and progress charts from successful former TheraPee patients.

A word about the charts: They were a big deal for Lila. With the first treatment method we tried, I kept my own records. Dr. Sagie pointed out that we were missing a critical opportunity to motivate Lila and help her feel invested in the process. What’s more, my chart was ugly to look at. TheraPee’s online chart requires more information, including the size of the wet spot, the time of night the accident occurred, and whether your child woke up on her own. It’s easy for kids to fill it out themselves. And when they have a dry night, they get to put a blue star on that square. After four dry nights in a row, they get a red star. And after eight consecutive dry nights, they get a much-sought-after gold star. I couldn’t believe how genuinely excited Lila was to place her stars on the chart, and how much she was keeping tabs on which color star she was due for. After two weeks of reporting results, Lila would have another session with Tal, using videos tailored specifically to her progress. (One note: His accent is strong, and I was certain Lila was going to find it distracting. To my surprise, it only seemed to make her pay more attention to what he was saying.) In the video clips, he would praise her progress, cheer her on, give mini quizzes to make sure she understood what she was being told (“What kind of star will you get for one dry night?”), and give us homework—daily exercises that would help strengthen her bladder or improve her reflex system. One such exercise required her to urinate for three seconds, stop for three seconds, and repeat that pattern until she was finished. (There are much more sophisticated exercises for children who use the program for a longer period than Lila did.)

Another difference this time around was the alarm itself. Lila wasn’t physically attached to it anymore (many kids resist that kind, says Tal). Instead, we put a sensor pad under her sheet that plugged into an alarm box right next to her bed.

Since mid-November, Lila has had a total of three accidents. She “graduated” from TheraPee in early February. As a way of celebrating, Lila got to virtually meet Tal via Skype, which was nothing short of a thrill for her, after all of her video sessions. This isn’t necessarily typical, but “we do our best to assist all patients by phone, email, or Skype if they need our help during the program,” he says.

The program isn’t cheap: You can either pay $279 for the alarm and unlimited access to the software, or $199 plus a $19.99 monthly fee (perhaps a better option if your child is very close to having dry nights). But the Sagies say their success rate with TheraPee is 90%, and it’s clear from these glowing reviews on Amazon that it’s working for many, many more children out there. If you’re interested, you can get a free consultation. And should you use it, I wish you and your child the best.

Kara Corridan is the health director of Parents. Now that Lila’s bedwetting days are over, she’s moved on to a loft bed, where she sleeps soundly every night.

How to Potty Train in 3 Days
How to Potty Train in 3 Days
How to Potty Train in 3 Days

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Ever Need a Big Dose of Perspective? I Do.

Wednesday, March 4th, 2015

When I think about what makes my life “hard,” it’s stuff like this: a frustrating commute. Young children who bicker a lot. Forever feeling rushed. Those extra pounds I’m always trying to ditch. Not getting enough sleep. In other words, nothing that hard.

If I find myself getting too caught up in all that, I remind myself of people whose lives are far more challenging than mine. One such person is a mom named Verena, whom I met last year when I was reporting a story about what it’s like to be a young mom with a chronic illness. Verena has multiple sclerosis (MS), which drives the immune system to damage parts of the brain and spinal cord and interfere with nerve signals between the brain and different parts of the body. She also has two children, ages 5 and 6. (They’re all pictured at right.) Verena has all of the same struggles as me, minus the commute. But on top of those, she has–to name a few symptoms–chronic pain, muscle spasms that make her feel like she’s permanently cramping, anxiety due to a recent divorce, severe exhaustion, and a lot of trouble moving quickly. In fact, at times it’s hard for her to walk at all. Can you imagine having active little kids and not being able to chase after them? Verena told me of the time her son, Stephen, climbed out their basement window as a toddler. She physically couldn’t have caught him–but her au pair did, which is a large part of why she needs live-in childcare.

Verena resists the outward signs of her disease, such as using a cane or wheelchair. But she often can’t function without them. I thought of this when I learned of a new national survey called “Women and MS: The Working Mother Report,” a joint venture with the National MS Society and Working Mother Research Institute. The survey outlines the challenges of women living with MS. One of the most interesting stats: 60 percent of women have tried to hide their MS symptoms at work. And 80 percent of women are currently experiencing symptoms; the most common are fatigue, numbness, problems with vision and walking, and pain. Another jarring finding: 64 percent of moms said their symptoms prevent them from participating in activities with their children. I saw firsthand how Verena’s physical comfort comes second to her children’s happiness–she tries to put on a cheerful face even when she’s in tremendous pain–but even so, she says her children will ask things like, “Mommy, when is your leg going to get better?”

This is National MS Awareness Week, and part of the mission is to recognize the tremendous progress that’s been made in treating this disease. The folks at the National MS Society say that studies in the works will determine whether certain drugs can help repair myelin, the casing of the nerves that is damaged by MS. And within a few years, researchers should better understand which exercises and activities can best help rebuild nerve connections and improve cognitive function.

In the meantime, I’m going to continue trying to keep things in perspective and make sure I always respect what parents with MS go through all day long, every single day.

Photo by Amy Postle

Kara Corridan is the Health Director at Parents magazine, and the mom of two daughters, ages 9 and 6. 

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5 Things I Didn’t Know About Young Kids and Social Media

Friday, February 6th, 2015

This is a topic that’s top-of-mind for me right now, as my 9-year-old daughter becomes increasingly persistent about wanting to have more and more of an online presence. She’s on Pinterest, which feels pretty harmless to me–when she even remembers to go on it, she pins pictures of desserts and puppies and bunnies. Over Christmas break I caved and let her join Instagram, on several conditions (such as no pics of herself, and no accepting followers without checking with me first). So far it’s working out okay, though there have been a few bumps. For one thing, she was startled and downright confused when a stranger commented on her comment, “Are you retarted?” (I pointed out the irony of the misspelling.) This gave us the chance to discuss what I’d warned her could happen by being on social media, which is that she could get her feelings hurt. Last week she came to me, terrified, after looking up a story about a dead girl who came back to life as a ghost that she’d seen posts about on Instagram. I was able to show her the stories she missed, the ones explaining that it’s a total urban legend, and used the opportunity to talk about how real and convincing things can seem online. (“But there’s a picture of her and everything!”)

Because I feel only barely prepared for everything that’s ahead of us, I was so glad to attend a symposium last night called “How Social Media Influences Our Children’s Development,” organized by The Meeting House, an impressive NYC nonprofit that provides innovative programs for children with social and developmental challenges. (Full disclosure: My sister, a pediatric occupational therapist, works for The Meeting House.) What I found interesting, and somewhat refreshing, about the event is that while the panelists covered the downsides to having children on social media, they spent as much–if not more–time on the benefits and values. I left with these key takeaways:

1. Children need a social-media mentor, someone in the know who can help them navigate the right way to behave online. Ideally, that would be a teacher or a librarian. But as keynote speaker Mega M. Subramaniam, Ph.D., explained, teachers and librarians rarely have the opportunity to guide our kids in that way, because school and public computers automatically filter out all social media sites. Of course, there’s a good reason for that. But I hadn’t thought of the downside until Dr. Subramaniam pointed it out. She’s the associate director of Information Policy and Access Center at the University of Maryland, and runs several social media literacy programs for tweens, and she suggests that in place of a trusted adult, find an older teen your child looks up to–a cousin, a babysitter, a camp counselor–who’s demonstrated responsibility online, and have that person help show him the ropes.

2. There’s a value to texting, even among younger kids. Julia is dying to text with her friends. I’m not allowing it. I feel it’s pointless–what on earth is there to text about when you’re in fourth grade?–and I fear it’ll erode her writing and spelling skills. But more than that, I worry that texting merely provides her with another avenue to see (or do) something inappropriate or rude. The panelists agreed that 9 is a little young, but they gave me ideas on how to allow it in a controlled way when I eventually do let her text. Stay away from group texts, suggested Orit Goldhamer, Psy.D., a middle-school psychologist at The Churchill School in NYC. Otherwise Julia will get sucked into a thread of neverending emojis and “Hey”s. And let her start out by texting only to plan get-togethers (I almost called them playdates!), as opposed to aimless chitchat that could more easily go awry.

3. Have your child ask herself one simple question before posting anything. And the question is this: “Would you show this to your grandmother?” Oooh. Good one. Or maybe this would work better for you: “Would you be proud to have your teacher see this?” I’ll be suggesting that Julia consider both of these.

4. Sign a digital media contract with your child. This will cover everything from time restrictions, to passwords, to where devices need to be kept at bedtime, to the importance of kind behavior, and more. The best one I’ve seen is from Common Sense Media, but a quick search will give you lots of options. And more importantly than signing the contract is revisiting it, points out Scott Gaynor, Ed.D., head of school at The Stephen Gaynor School in NYC. It’s tempting to go over the rules once and shove the paper in a drawer, but just like any important topic we want our children to understand, we need to talk about it often.

5. Fun fact: There’s an unspoken rule among kids that you post to Instagram no more than once a day. It’s clear that my daughter, who only gets to use her phone on weekends and goes to town on Instagram for those two days and nights, has no idea about this one.

 Image: Surprised children on mobile phone via Shutterstock.

 Kara Corridan is the health director at Parents. Her two daughters, ages 6 and 9, will tell you they have cell phones “with NO SERVICE.”

Controlling Your Child's Digital Interactions
Controlling Your Child's Digital Interactions
Controlling Your Child's Digital Interactions

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Is Your Home as Safe as You Think?

Friday, January 23rd, 2015

Nearly 9 million children end up in the emergency room each year.

Roughly 8,000 children die each year from unintentional injuries.

In fact, preventable injuries are the leading cause of death for children in the U.S.

And among children up to 12 years old, their injuries often happen at home.

This is what prompted Nationwide Insurance to embark on an ambitious campaign called Make Safe Happen. The goal is simple: to reduce the number of preventable injuries in and around the home. Through the web site and free app—both called Make Safe Happen—parents and caregivers can learn exactly how their child is at risk. Both methods are impressively user-friendly; you can sort the info based on your child’s age, the various parts of your home and yard, and injury types.

One of the most helpful features of the app is the product recommendations. Say you’re looking at a checklist of steps to take to make your toddler’s bedroom safer: Among them will be to install window locks and guards. In addition to the tip, you’ll be prompted to immediately shop for the items and can be directed straight to Amazon to buy them.

Also key: Automatic reminders imported into your calendar, which are perfect for precautions like testing your smoke alarms every month and replacing their batteries.

All of the information has been created and vetted by experts from Nationwide Children’s Hospital in Columbus, Ohio, and Safe Kids Worldwide in Washington, D.C. Among the main contributors was Lara B. McKenzie, Ph.D., principal investigator for the Center for Injury Research and Policy at Nationwide Children’s—and mother of 3-year-old triplets! (I’m exhausted simply typing that phrase.) Though she’d already been working in the injury-research field by the time she became a mom, motherhood is what really brought this issue to life, she says: “In my professional world, we’re always asking how we can get parents to adopt countermeasures to prevent home-related injuries. When my kids were born, I thought, ‘Why do we have to make it so hard?’ And this is the idea behind the app: I’m standing in my kitchen, and I know I need to lock the cabinets. But what kind of locks do I need? I need to secure my TV to the wall—but what kind of straps should I buy? We’re answering those questions for parents. We’re telling them about the hazards, as well as the products that can reduce the consequences.”

I blogged just the other day about parents who go to incredible lengths—true extremes—to keep their children safe. It would seem I’m being hypocritical, following that up with a post about how dangerous our homes can be. But the reality is this: If you’ve taken the proper precautions around your home, with help from resources like the Make Safe Happen site and app, and if you’re aware (not hyperaware!) of what your child is up to, then you’ve done right by your child.

Kara Corridan is the health director at Parents. She has two young daughters and needs the Make Safe Happen app more than she cares to admit.

Babyproofing Your Home: Kitchen
Babyproofing Your Home: Kitchen
Babyproofing Your Home: Kitchen

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