My world turned upside down Wednesday afternoon based on a single number. That number is driving me crazy. But that number is derived from a single test — a capillary test, basically a pinprick to the finger. Surely it would make sense to have another test. She is scheduled for a follow-up test in three months — a venous test, not another capillary test. That’s standard procedure. But why wait? Perhaps we need a second opinion now, preferably done by a different lab.
I’m not nourishing false hopes; I just want to be sure. If we’re going to stake so much on one little number, shouldn’t we be sure of it?
Plus, there were some aggravating administrative screw-ups at our doctor’s office. I like our doctor, but I don’t like the system in which she’s ensconced. They have have undermined my confidence in their reliability.
So. I called down to the City’s prevention program and talked to a guy there who was very helpful, about this idea of getting a second opinion. I learned from him something which I had sort of inferred already, that a venous test is more reliable than a capillary test. He mentioned that capillary tests sometimes yield false positives. Apparently the nature of that method is such that it is susceptible to contamination by environmental lead particles. (But reference what I wrote above about “nourishing false hopes.”) If we’re getting a second opinion, it might as well be via the more reliable venous method. He gave me the number of a clinic.
But when I called the clinic, they rebuffed me. The venous test has to be done by the same physician that did the initial capillary test. One can’t just drop in and get a venous test.
That gave me pause to slow down and consider. The only reason I’m pursuing this is for my own peace of mind. Having blood drawn repeatedly could be more traumatic for our daughter. The public health guidelines and procedures are there for a reason. Let them work.
These last six days have been pretty rough for Xy and me. A certain amount of self-recrimination is inevitable. Have we not kept the house clean enough? Have we not washed her hands often enough? But mostly I’ve just been sick with worry about what the girl’s future might hold. So much uncertainty, so many questions.
As corny as it sounds, I’ve found a certain strength in the following mantra: We are going to get through this together as a family.
I hope someday I can look back on this and think I was being overly dramatic. Nothing would please me more.
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B- I would never try to minimize what ya’ll are going through. And your concern points to attentive parenting and I am very impressed.
But. Millions of people have had to deal with this issue. And given that lead in paint in residential settings wasn’t officially banned until 1978 and lead in gas didn’t get phased out until the late 70s as well, you and I both grew up in world with more opportunity for lead exposure as did most previous generations.
There is no cause for self-recrimination. You are taking all the right steps.
Anthony is correct. You ARE taking all the right steps. Keep li’l P’s well-being close to your heart and let it guide you. All of y’all will get through this.
((((((hugs))))))
Your posting caused me to reflect that I have never had my kids tested for lead anywhere and thinking back on this there have to have been places we were all exposed to lead: Philadelphia, New orleans (5 years in an old house in the 9th ward), old house in Alaska (7 years), Navy barracks family housing at Berkeley (6 years, god knows what in Indonesia, Bloomington) Some times I think we are over analyzed by the medical community just because they can.
When my daughter was almost a year old she was on the floor and a friend accidentally stepped on her finger and broke it. We took her to a doctor who at first described the injury as a ‘bent piggy’ and then he told us he could fix it but she would have to have a full body anesthesia to do it which means she is on deaths door depending upon the skill of the anesthesiologist. I said: no way, we’d wait till she was older. The doctor immediately got upset and started describing the ‘bent piggy’ as a debilitating deformity which would mean she’d never play the piano. 6 years later we got the ‘bent piggy’ fixed and she played piano for 10 years.
I view doctors and the medical community as garage an car mechanics. Some better than others and usually the best the one with the most common sense to put things in perspective. Your daughter has a problem. You deal with it and most likely she will be fine, regardless it has nothing to do with anything you all did or didn’t do.
None of us are living in Eden.
http://www.springerlink.com/content/271351411086815v/
I see no reason to assume the worst. You will take all the appropriate actions in the meantime.
You never responded (that I saw) to queries about the day care, which seemed reasonable given your prior proactive stance. I wonder why. Are you confident there’s no lead source there to concern you? Have you discussed this at all with other day care parents? Maybe other kids should be tested.
Kent — thanks for that link. “Seventy-three percent of elevated capillary screening tests (2.2 percent of all capillary screening tests) were false positives.” Wow. 73%? That is substantial. I didn’t realize it was that high. Maybe we need to get a second opinion after all. A second capillary test might be a less intrusive option.
As for the daycare, we surely will take a close look if we don’t find an obvious source in our home. The woman who runs the daycare is intelligent and aware of environmental issues, while our home has known lead-paint issues — so it seemed obvious to start at home. We should have those test results soon.
Bart, if you want another test, pursue it. You can find a place that will do it, or go to another Doctor to order the venous test. Do it for your peace of mind, and so that you can make the best decision about how to proceed. You are your child’s best advocate, and when problems like this arise, I found found that Doctors and Child Care providers, and anyone else involved in your child’s health and safety really need to be pushed. Follow your instincts and demand what you know is best for your family. She will soon forget the prick of a needle, but you need that information to make your best decisions about how to proceed.
We love you all and have been thinking about you so much this week.
I agree with Anthony’s sentiments.
I would pay the extra out of pocket expense for a specialist second opinion for sanity sake.
You’re being a responsible adult, Bart. Sticking together is the best thing y’all can do. My fingers and toes are crossed that this turns out okay.
There’s no such thing as being over-anxious about your child. Hugs to you and Xy.
I could not disagree more with Maitri’s sentiments. I know many people raised by over-anxious parents, and they’re still dealing it.
*with it
Assuming that the capillary test had good sensitivity (low false negative rate), it is still doing its job as a screening test, which is its purpose. A negative result would rule out a problem. But the lousy specificity means that a positive result does not rule it in. The next step in this case is to perform a confirmatory test, of a different kind, with a much higher specificity.
You should find out the specificities of both the capillary and venous tests that were/would be used (the test kits specify these), and calculate the probability of a correct diagnosis accordingly. Please find out an let us know.
Bart,
Know that you’re not just going through this as a family. You have many friends and loved ones who are thinking about you and praying for you and are willing to help in any way we can.
Love y’all.
Mark, Carol, and Our Family
Bart,
I want to echo the sentiments here, especially those of Anthony and Mark. You are doing everything right, you have no need at all for self-recrimination, and by no means are you all going through this alone.
I’m right next door on the fifth floor and am available for whatever you need me to do whenever I’m not in class.
Blessings,
SFS
[…] for a second opinion — another capillary (pinprick) screening. I decided to pursue this after Kent shared a link indicating the rate of false positives for such tests may be much higher than I expected. (Like, as […]
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