Autism, Juvenile Diabetes, and Autoimmune Factors

Several studies have been done in the last decade indicating that families with autistic children have a higher prevalence of autoimmune illness. As I was reading about the autoimmune factors associated with autism, a chill went down my spine. For many years I have been perplexed as to how our family could have been struck with both autism and juvenile diabetes. It seemed like such bizarre misfortune to have two very different incurable conditions strike three of my sons. But perhaps there is a link. I remember when a nurse in my son’s hospital room mentioned that there might be … Continue reading →

Our Experience with Research Studies

Some time ago, Krystin wrote a blog about research studies and asked others to share their own experiences. I’ve had children in two studies, at two different departments of a major university. The first study involved me and my 11-month-old birth son. The study was on breastfeeding while taking a certain type of medication. It involved one visit. My blood was drawn and the level of medication in my blood measured, and the level of medication in my pumped milk was measured. Then I nursed my baby, who was weighed before and after feeding on scales precise enough to determine … Continue reading →

Giving of Ourselves (Ouch!) for Research

Last Wednesday, my four sons and I drove to the University of Utah Pediatric Diabetic Clinic to participate in a medical study called “The Type 1 Diabetes Genetics Consortium.” Since two of my sons are diabetic and two are not, we are in a unique position to help researchers find clues about possible causes of juvenile diabetes. Each of our blood samples would be compared and screened for genetic markers which would indicate a risk of contracting this mysterious disease. Of course, that meant “giving of ourselves,” like our time, effort, and of course, our DNA. “It’s going to hurt…” … Continue reading →

The Jewelry That Gives Peace of Mind

Have you ever considered what might happen if your child had a medical emergency and you weren’t around? And if your child couldn’t speak due to a disability or because he was unconscious, how could he get help? William Y. Rial, Former President of the American Medical Association has said, “Even if your children are old enough to understand the seriousness of their condition, why gamble on the ability to communicate in a situation in which they may be unconscious or too ill to speak? If your children suffer from any condition that could endanger them or complicate treatment in … Continue reading →

Should You Seek Genetic Counseling?

Genetic counseling is a guidance service offered to prospective parents who are concerned about whether they might pass on a family disease, defect, or trait to their future children. It is also for parents who already have one child with an illness or disability, who want to know their risks of having a second child with the condition. Genetic counselors also work with parents who are closely related, or who have had a previous miscarriage or infant death. They deal with parents who have had multiples (twins or triplets, etc.), or those who have been exposed to an environmental hazard … Continue reading →

Medical Research: Our Family’s Affair

Well, the “study folks” finally made contact with me. They had left several messages and I had intended to return their calls…sort of. I knew that participating in a research study was something our family would be asked to do. Perhaps I was intentionally not making myself very available. But I knew that eventually they would track me down, and yesterday they did. The Request “Mrs. Crow? This is Jeannie…” She went on to explain that because our family had two children with juvenile diabetes, we were eligible to participate in a study called the Type 1 Diabetes Genetics Consortium. … Continue reading →

The Dentist Who Punched Me

It seems unbelievable, but it’s true. When I was a young girl, my mother took me to the dentist to have a cavity filled. I was probably seven or so, and terrified. For some reason, parents were not invited into the examination room, and my mother—rest her soul—was too timid to insist. I remember whining and crying in fear as the dentist tried to do his work. There was no assistant in the room. I’m sure I caused the man a great deal of frustration. All of a sudden, he reared his arm back and punched me in my stomach … Continue reading →

Should Your Child Participate in a Study?

Now that I have two sons with juvenile diabetes, calls have been coming in. “Would you and your boys be willing to participate in a study?” At Riley’s first visit at the diabetic clinic, the endocrinologist said, “There are various studies underway in which your boys could participate.” Studies. Well, I’m sure this is a good thing, because it shows that somebody out there is trying to get to the bottom of this mysterious disease. What environmental factors trigger JD? Why do certain kids seem to contract it and others don’t? I received an email from an old friend from … Continue reading →

Why Overweight Kids are at Risk For Type 2 Diabetes

According to the U.S. Surgeon General, approximately 13 percent of children age six to eleven years old, and 14 percent of adolescents twelve to nineteen years old are overweight. In the year 2000, a panel of experts from the American Diabetes Association estimated that on average, 20 percent of newly diagnosed diabetes in children was type 2, and 85 percent of these kids were obese. Type 2 diabetes was once almost exclusively an adult disease, but in recent years the numbers of children with diabetes type 2 is increasing at alarming rates. With today’s surge in video technology, kids are … Continue reading →

Working with Professionals and Avoiding the Pitfalls

You realize that your child has special needs, and now you feel as though you’re surrounded by a swarm of professionals, all giving you instructions and advice. The greater the degree of your child’s handicap, the more professionals you’re likely to deal with. How do you maintain your parental control, when you feel intimidated by these knowledgeable strangers? Here are some pitfalls to watch out for when dealing with these experts: Technical Lingo: Sometimes doctors, specialists, and even social workers start to speak in what seems like their own mysterious dialect. That’s because day after day as they deal with … Continue reading →