When the children were small I made sure to get them to each well-child checkup. This was especially important because Big Boy had started out badly with seizures and was being watched closely for developmental issues that did require him to get early intervention services. I am not going to explain what to expect at a well-child checkup because that is covered quite nicely here. This is a personal story on why I think they are important.
As time wore on, Big Boy’s issues stabilized and all three of the kids became busy. There were soccer games, nature camps, play dates and all of the other bits of normal kid life (with the addition of special education meetings at school). I just kind of forgot about those annual checkups. Often times they got done when I was reminded after calling in about warts or something else.
I was even forgetting them for myself, except that I ran out of my prescription allergy pills. I had managed to stretch them out by taking the over-the-counter stuff at night (they make me sleepy), but this was a particularly bad summer causing my face to swell up. So I called to refill the prescription, and was told I needed to come in for a checkup. Okay. While I was there getting poked and prodded I was reminded that Big Boy was due for a tetanus booster and was also overdue for a checkup. So I made an appointment for him just as his afternoon soccer camp was starting.
So on an August morning I took him in for the checkup, and since he was going into high school I decided that it was okay for me to not be in the room. He was, after all, a Big Boy. After he came out the nurse asked me to follow him to talk to the doctor. The first thing I saw when I entered the exam room was the grave look on the doctor’s face. He told me that my son had heart murmur, and it was something he had not heard in him before. He sent me next door to the hospital to schedule an echocardiogram.
That Friday morning we walked down the hallway of the small neighborhood hospital and he had an echocardiogram. It is an ultrasound exam that looks at the function of the heart. I could see and hear my son’s heart pump. The technician used a stylus to mark points and measure the distances, and then she popped out a video cassette (this was eight years ago) for the radiologist.
We went home, had some lunch and I sat down to go through some email before taking him to soccer camp. I then got a call from the doctor telling me that he did not think it would be a good idea for Big Boy to go to soccer camp that afternoon, and to make an appointment for next week.
That next appointment was oddly short. The doctor told me that Big Boy had a genetic condition called hypertrophic cardiomyopathy, and it was very serious. He gave me a referral to a pediatric cardiologist at the main hospital downtown. What followed were several appointments that included EKGs, a stress test, a 24 hour EKG with something called a “holter monitor” and another echocardiogram.
The same technician who did the echocardiogram at the neighborhood hospital was there to do it at the main hospital. She told me that I had mentioned he was going to soccer camp a few hours after the echo, and she became quite worried after what she saw. She really did not have the authority to tell me not to take him to soccer, so she called our family doctor and told him what she saw so he did not have to wait for the official radiologist reading.
His heart condition is very serious, but it was caught in time. Just a few days before his diagnosis, a young person died from it a middle school track meet. And here is the scary part; it is fairly common (about one in a thousand) and is genetic. I talked to my father and learned that it may have been a contributor to the death of one of his sisters as an infant and his brother in his 40s (though we really don’t know). The other two kids were tested, but had no signs of abnormality (but will need to be checked every five years until their 30s).
So I became more diligent about well-child checkups (even if the *&^%$#! health insurance did not cover them). No other major issues have been found. Math Man has scoliosis of his spine, but it is only about 10% (though the doctor insisted it be X-rayed once a year for about three years to see that it was not changing).
Fortunately Big Boy only really needs to take beta blockers to reduce the pressure across the mitral valve and regulate his heart rhythm. For more information see:
The Hypertrophic Cardiomyopathy Association, full of all sorts of information, but I find the forums and stories too depressing.
Note: This past year we’ve had problems with Big Boy taking his medication. He did not like that it made him tired after taking it, and then his heart would go faster later. So the cardiologist prescribed a time release formulation to make sure there was a steady level throughout the day. Unfortunately Big Boy was not diligent, and on Labor Day Weekend he complained of a racing heart and numbness in his arms, so his father called 911. He was taken by ambulance to the hospital where he was stabilized, given a fast acting version of the beta-blocker to help when he had rapid heartbeat and now we have another round of medical appointments. He should be fine.
I cannot say enough good things about the firefighters, the paramedics, nurses, technicians, doctors, clerks and everyone else who I have encountered in connection to my son’s heart condition. Though when I rode in the front of the ambulance I was appalled how clueless some drivers are when there are flashing lights and sirens. Please, when you see flashing lights and hear sirens: get out of the way!.
Edit for March 2012: Due to issues with a complex migraine (it mimics a stroke) and HCM our son ended up in the university hospital for two days. Both his regular cardiologist and the university cardiologist have recommended open heart surgery for him. His regular cardiologist referred him to the Mayo Clinic in Minnesota. We are waiting for the dates from them after we get results of the genetics tests in April (yes, Virginia, genetic testing takes several weeks so they can check for errors, it is not like the CSI TV shows). The genetic tests will help us check the other two kids to see if they have the same genetic sequence.
Edit for June 2012: He had surgery in late May, and is still in recovery stage. The whole experience at the Medical Mecca known as the Mayo Clinic in Minnesota was surreal. He is presently in cardiac rehab classes three times a week at a local hospital for twelve weeks. This is what is covered by his father’s insurance (which he gets by being under age 26, something that can change for the worse depending on the Supreme Court). I need to write a long email to my family, deal with younger son and his apartment issues, and then I will hopefully be back. I think I’ll start with genetic testing: my son has none of the known genetic sequences for HCM. This means there will be a family echocardiogram set of tests later this summer. Le sigh.
Edit for December 2012: I spent the summer taking him to cardiac rehab three times a week. This is where he gets a supervised exercise session hooked up to an EKG to make sure all is okay. After the prescribed amount that is paid for by insurance (thank you Obamacare!), he switched to lower level of cardic rehab for about $65 per month. So I take him there twice a week, and then to his class at the nearby community college.
For those who deal with heart issues I highly recommend the book Heart 411 which was reviewed by Dr. Harriet Hall. It does explain cardiac rehab, plus some scary statistics on HCM.