So Why All the Mystery?

I hope you’re not too fed up with hearing about my uterus. It’s a pretty big deal for me, and a pretty major surgery on the horizon… so I’ve got a lot of processing to do. One lingering question isn’t so much about the health issue itself but about the mystery surrounding it. Why was my regular doctor not willing or able to make a definitive diagnosis when another doctor — faced with the same exact report from the ultrasound — did? I’ve come up with a few possibilities. For one thing, maybe the level of expertise is part of … Continue reading

When Your Doctor Has Bad News

A friend of mine had a scary diagnosis recently. The big C: cancer. It got me thinking about how I would handle a major illness. Do some research. I’d want to understand what was happening in my body, what symptoms I could expect, and what treatments are out there. Sites like www.WebMD.com and the National Institutes of Health are good starting points. Get a second opinion. Doctors know a heck of a lot more about health stuff than I do, but nobody is perfect. Your doctor shouldn’t take a second opinion as an insult, or a commentary on his or … Continue reading

Are Asians Misdiagnosed with Fetal Alcohol Spectrum Disorder?

My last seven blogs have told a very personal story, but it may not be as unique as I thought. The very next summer after our Two Months of Hell, a coworker at our church was in tears—her son and daughter, adopting from Korea, had received the referral and photos of a little boy the whole family had fallen in love with—then the doctor made dire predictions about fetal alcohol exposure. “We’re all just crying our eyes out,” the grandmother-to-be said. Later these concerns were proven unfounded. The child was adopted by this family and doing just fine. At least … Continue reading

Path to a Prognosis—Part One

This is the third part of my story of the One Thing I Said I’d Never Do,namely, adopting a child with known prenatal alcohol exposure. We were stunned to learn that our daughter’s biological sister had been heavily exposed (find this second blog here). The baby in question being Meg’s sister complicated things considerably. How could we not at least consider it? We sent Regina’s medical record, measurements, and photos to the adoption and fetal medicine clinics at our local university medical center, which happens to be the university where much of the initial identification of and research on Fetal … Continue reading

Preventing Misdiagnosis

A misdiagnosis can be a serious problem — experts say that out of four people who are misdiagnosed, one will die because of it. You can help your doctor make the right diagnosis and administer the best treatment. Doctors generally consider three things when making a diagnosis: medical history, symptoms, and physical exam. Taking an active part in your health-care decisions can protect you from a misdiagnosis. Keep a diary of your symptoms. Whether you’ve been feeling bad for a few days or a few years, note the problems that occur most frequently. Track the level of pain or discomfort … Continue reading

Stuck in Between–When We Have to Wait for Answers

There’s a strange and awful place that we sometimes have to go when we have a child with a developmental delay or chronic illness. It’s like a halfway point between two doorways: The “everything’s going to be alright” doorway, and the “my world and my child’s world is shattered” doorway. And we stand there, in limbo, waiting to see which one will open. The Agony of Waiting We find ourselves in this in-between place when we’re waiting for the doctor to call with results from our child’s blood test or biopsy. Or when we’re waiting to hear the psychiatrist’s analysis, … Continue reading

Should We Call Our Kids Fat?

Well, the obvious answer to this question is no. When adults put labels on kids, it can cause psychological problems and it can also generate behavior that is not productive. A number of articles appeared in various papers today discussing this same question. Experts are asking whether or not it is okay for parents to tell their children or their teenagers that they are fat. The debate is over language that the government uses is too fuzzy and gentle and doesn’t cut to the heart of the matter. But the problem is – telling someone that they are fat or … Continue reading

What Causes Down Syndrome?

It might surprise you to learn that “Down Syndrome” is the most commonly occurring genetic condition causing mental retardation in humans. Approximately 1 in 733 babies are born with the syndrome, and approximately 350,000 people have Down Syndrome in the United States alone. It was given its name when a physician, Dr. John Langdon Down, published an accurate description of the features and similarities of people with the syndrome in 1866. He was then considered the “father” of the disorder, and it was given his name. Why does it occur? Down Syndrome occurs because of an error in cell division, … Continue reading

My Battle with Stress While Mothering Special Kids

Writing this blog has caused me to reflect on my early experiences with mothering and the many fears I had. I recall the devastation I felt when one child was diagnosed with Autism, and intense anger when my older son was then diagnosed with Juvenile Diabetes. I thought the entire world was conspiring against me. Why were my children given these problems? My third boy was born with a cataract in his eye which accompanied other medical concerns. Why was this happening to me? How was I going to deal with all of it? In the midst of all this, … Continue reading

“Your Son is Autistic.” Kyle’s Diagnosis

A New Pediatrician It’s amazing what a pediatrician switch can do. When I took Kyle to meet his new doctor, she listened intently as I described all of my observations. She took notes and asked questions. She spoke to Kyle and observed him as he stared into space, smiling and twiddling his fingers. Immediately she gave me a list of referrals. Kyle’s Evaluation Within a week I had an appointment at the Children’s Hospital in San Diego, where Kyle met with a doctor specializing in childhood neurological disorders. I was given an interview, where I described all the symptoms I … Continue reading