"Doctor, What Would You Do If It Were Your Child?"
When parents find out that their child has a serious condition like cancer or autism, they must make gut-wrenching treatment decisions, and they wish their doctor could tell them what to do. Meet four pediatric experts whose kids were diagnosed with the very same illnesses that they specialize in -- and who can now share candid, personal advice with other moms and dads.
"My Daughter Had Leukemia -- Twice"
The Cancer ResearcherEric Sandler, M.D., chief of hematology/oncology
Nemours Children's Clinic
It's shocking news for everyone: When my wife called to tell me that our daughter, Alyssa, then 3-years-old, had been diagnosed with leukemia, I was so stunned that I forgot how to get to the pediatrician's office. In retrospect, I realized she hadn't been well for a few weeks, and I had completely missed all the symptoms of leukemia -- even though I'd just finished my fellowship in pediatric oncology, and leukemia was my specialty.
What to say if your child asks, "Will I die?": Whenever Alyssa asked me this, I'd tell her, "Everyone is going to die sometime, but we're going to get you cured. I don't think you're going to die from this."
Dr. Dad's tricks: When Alyssa was first diagnosed, I was a relative newbie, both as a dad and as an oncologist. But I learned little tricks, like trying never to prescribe a medication that needs to be taken four times a day, because that's so hard for a kid. I know everything you can mix bad-tasting medicine with. I recommend chocolate milk for liquid medicines. Crushing pills into chocolate pudding or chocolate ice cream also worked for us.
What I tell parents who ask, "What would you do if it were your child?": I encourage them to enroll their child in a clinical trial. That's what we did with Alyssa's first cancer. With her relapse, we didn't, but that was only because there wasn't one open at that time. Clinical trials are so important because childhood cancer is very rare -- only 10,000 to 12,000 or so kids will be diagnosed with any type of cancer this year. It's much harder to research new drugs for kids than to study drugs for women with breast cancer, for example, because there are hundreds of thousands of breast-cancer patients available for testing.
How illness affects a family: All four of my kids know more about cancer than most other children do, and I like to think they're more compassionate. Alyssa is especially empathetic, and she's a really positive thinker. We know the cancer shaped her life, but we've tried not to let it define it.
It's hard not to be scared: I don't tell patients about Alyssa, but by the second visit, they all seem to know. I guess someone on the staff must tell them. My family likes to think that it's all behind us now. But cancer is always in the back of your mind, and there are no guarantees. So I really understand how frightened parents are when they talk to me. And I understand how they worry.
"My Son Has Cystic Fibrosis"
The PediatricianLaura Farach, M.D., pediatrician
Baldwin Park, California
I know how sad it is: I diagnosed Nicolas with cystic fibrosis (CF) when he was a week old. My husband is a doctor, too, and I had treated CF kids in my practice, so we knew it was a very serious condition. (About 30,000 people in the U.S. have the genetic lung disorder, and about 10 million people carry the gene.) The news was crushing. The grief he and I felt was absolutely indescribable. But we just focused on caring for our baby.
How we live with CF every day: Nico, is a great kid. We try to make life as normal as possible, for him as well as for his sisters, Camila, and Carmen. When my daughters complain that his daily treatments take too long, I remind them that CF affects all of us. I tell them how proud I am that they look out for their brother.
Insider's guide to giving medicine: Nico takes ten different medications, which adds up to 35 pills a day. We learned early on that you can't make it a power struggle -- the consequences of missing a dose are too great. A little bribery is okay. Nico gets to pick what's on TV while he's taking his inhaled medication and wearing the compression vest that loosens mucus in his chest.
What to do when you have to hurt your child: When he was 2, Nico had to have a permanent central IV line placed in his chest. It took three of us to hold him down and change the dressings every third day. Something like that gives the terrible twos a whole new meaning. (Nico has had so many IVs that he started leaving used ones under his pillow for the IV fairy to take away!) If you must inflict pain on your child, try to have someone else do it; you can comfort him afterward.
Help others understand: Most parents know that regular exercise is crucial for clearing the thick mucus out of their child's lungs. But other people -- phys ed teachers and coaches -- often worry that too much exertion might be dangerous, so you need to explain. That's been easy for us because Nico is so active. He's the second-fastest boy in his class. He rides his bike, and he loves ice hockey, skateboarding, and in-line skating.
What I tell parents who ask, "What would you do if it were your child?": I hesitate to give any alternative remedy, like the fish-oil supplements some CF patients take. Nico takes so many pills, he doesn't need anything else, especially if it hasn't been proved to be effective. I encourage parents to look for clinical trials. They're the way miracles will happen. I also remind parents that cystic fibrosis is one of the most demanding of illnesses. We must be very disciplined with our children's daily medical regime so that we can keep their lungs healthy.
I'm optimistic: We don't discuss the prognosis of Nico's illness, which is much better than it was 15 years ago. Many people with CF now live into their 40s. When he asks me how long he'll live, I tell him that he'll grow up and marry and have a family, and that doctors and scientists are working very hard to find a cure. In fact, my father, who is a Ph.D. and researcher in physics, has developed a potential treatment that could dramatically improve the delivery of medications into the lungs, and we're testing it now. We're very positive about the future. Hope is truly the most essential medicine.
"My Daughter Has Autism"
The Child PsychiatristJeff Bostic, M.D., Ed.D., assistant professor
The worst part: At age 2, Lisa (name changed to protect her privacy) didn't make eye contact, and she didn't talk. At all. I'm a child psychiatrist, and I teach other child psychiatrists who work in schools. Dealing with autism is a big part of what we do. I also see plenty of kids with autism in my private practice. Even so, it was really difficult for my wife and me to accept that Lisa was autistic. Nothing prepares you for that.
You don't need a top expert to get the best care: At first, I suggested high-powered specialists, but my wife, Robin, said, "Why don't we just have her evaluated by our school district?" It's turned out to be the best decision we made. Parents mistakenly assume their pediatrician will make a diagnosis, but school districts -- which are mandated to evaluate children long before they're old enough to start school -- are usually the best first stop. Early intervention is so important.
Build a team: Lisa, has always attended regular school (not all kids with autism can), and we discovered that finding allies can turn an okay school experience into an excellent one. For us, it was staff members at Lisa's preschool, who spotted right away that she was good at basketball.
Let go of your anger: Parents want to blame someone -- a pediatrician, the school district, the people who sell vaccines. But having children isn't like buying a car. You don't get to choose the model and color you want.
What I tell parents who ask, "What would you do if it were your child?": I remind them to look at the big picture. Parents get very focused on being their child's advocate, which is important, but you can get so consumed with demanding 26 hours of therapy or this service or that service that you forget about what all children -- with or without a disability -- need. Does your child get to go to the playground, and is it fun? Does she have friends? My experience with Lisa has made me more compassionate with parents. I never give parents false hope, but I say, "Here's what you can do to help your child be the child she was meant to be."
Making sense of the vaccine controversy: There's just not sufficient medical evidence to believe that mercury in vaccines causes autism. When we had our second daughter, Basie, two years after Lisa, we chose to vaccinate her. There's also not enough evidence to support chelation (to remove mercury from the body) as an autism treatment. My role is to give families as much accurate information as possible but to respect their decisions as long as the child's health is not in jeopardy.
Enjoy your child: We tend to think we're supposed to help kids with autism catch up to other children, and that's just a horrible pressure on everyone. We're very hopeful about Lisa's future. There are so many things she's great at. She has perfect pitch, plays several instruments, and sings in the school chorus. And she's really good at sports. We plan on her going to college, and we're saving for it.
"Three of My Kids Have ADHD"
The ADHD ExpertPatricia Quinn, M.D., director
National Center for Gender Issues and ADHD Washington, D.C.
I know how it feels to have attention deficit hyperactivity disorder (ADHD): I'm a developmental pediatrician, and I decided to specialize in ADHD -- I had been diagnosed myself when I was in my 30s. I got through medical school only by staying up later than everyone else. I had to read everything twice.
Not all kids with ADHD act the same: There's a very strong genetic component, and three of my four children, who are now in their 20s and 30s, have ADHD. Even though they're very different, each was also typical. One was very active, so we spent a lot of time managing his behavior. He was in time-out a lot. By second grade, we decided it was time to give him Ritalin. Another was almost the exact opposite: shy and quiet but very distractible. By sixth grade, we realized that he would benefit from the same medication. And we knew my daughter had learning disabilities, but by the time she was in seventh grade, it was clear there was more going on, and she too went on Ritalin. In high school, she switched to Concerta, which has to be taken only once a day, and we saw a big improvement.
It's important to keep a close eye on girls: Unfortunately, because most girls are diagnosed later (usually around 12, as opposed to 8 for boys), they can have more problems socially. That's particularly tough because girls are also much more aware of their social differences than boys are.
Trust your instincts about when to seek help: One of my kids was put in a lower-level reading group because of his behavior, when he was actually reading at the higher level. At that point, I knew it was time to do something.
What I tell parents when they ask, "What would you do if it were your child?": I say, "I know what you're going through, and I've been up at 4 a.m. crying too." The decision to medicate a child is really scary. It helps parents when I can say, "It's okay to wish you didn't have to give your child medication, but you're doing it for his benefit. He deserves it." I help them focus on the long-term outcome. Yet kids often benefit immediately. The other day, one of my patients said to me, "I don't feel any different on my medicine, but my report card sure looks different."
Pills don't solve everything: Most kids need additional behavioral therapy. Medications may dull the impulse to punch somebody, but they don't teach you what to do instead. And if a child hasn't been able to pay attention in school, she's missed out on a lot of learning, and she may need help catching up.
The skill all ADHD kids need: It's so important to teach kids to be their own advocates. By eighth grade, a child should be able to say, "I have ADHD. Here's what I do well, and here's where I need help." Despite my worries, all my kids are happy and successful; they made it through college and found rewarding careers.
How I've grown: My children have made me a much better doctor and a more passionate advocate for kids with ADHD. When one of my kids was 9, he asked, "Mom, are you in this business because of me?" I said, "No, I was in this field before you were born. But God was good enough to give me kids like you to make sure I knew what I was doing."