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James

Testing Children for PSD

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Q: If you have Protein S Deficiency and have children, when should you get them tested?

A: There is no need to test them, unless there is another risk factor for thrombosis.

The statistics show that about half of the people with a deficiency of Protein S stay clot free throughout their lifetime. The other half tend to experience their first clot in late teens or early twenties. Medication, in the form of anticoagulants, is only given to people with a history of thrombosis. So until you have your first clot, you don’t know which half you are going to belong to. And until you have your first clot you aren’t going to be taking the anticoagulants that would have prevented it.

This seems a bit bizarre until you consider the cost of blood testing, medication side-effects (and risk of uncontrolled bleeding), and how health services tend to operate. Most of the time health services are responding to a change in health, then diagnosing and treating. It is very rare for a health service to extend to preventative actions unless it is cost effective or save lives (e.g. vaccinations). The cost of treating a few patients with thrombosis is cheaper than testing the whole population for the all the different risk factors.

However things are slightly different if you already know someone related to you has already been diagnosed with Protein S Deficiency. But a blood test isn’t going to tell you whether you will or won’t go on to have thrombosis, and so you won’t be put on anticoagulants. So all a blood test will actually do is cause you to worry more about the future, and perhaps exclude you from health insurance or force your hand into declaring it as a pre-existing condition. So why bother?

If you are a teenage girl considering birth control measures, then testing is advised before you take any pills. There is an increased risk of thrombosis with some contraceptives, so if there is any family history of PSD or thrombosis then get your PSD status checked first.

If you are teenage girl and are planning to, or think you may be pregnant then also get yourself tested because it is relevant to the care of your baby and the doctors will want to know about it.

Other than that, assume that it is good and healthy and sensible to take precautions in certain circumstances, such as if you have an extended stay in hospital (e.g. a broken leg) or taking a long journey (plane, train, whatever). Precautions means staying hydrated, avoiding alcohol, exercise normally, staying the right side of obesity, and maybe wear some compression stockings. Everyone can do this, you do not have to be diagnosed with PSD to reduce the risks of thrombosis.

If you are under twenty and want to get yourself checked then by all means do so. However even if you are given a PSD diagnosis the doctor isn’t going to give you anticoagulants. And without them you may find out the hard way whether you are one of those people that gets to experience their first thrombosis event. But do so, knowing that the symptoms can be recognised and treatment is available.

Not getting tested is probably the most practical way forward... it makes no difference to your actual risk of thrombosis... but at least you can keep your medical history to yourself and gain the benefit of insurance cover.

A simple (D-Dimer) blood test can rule out a false alarm... so always get yourself checked if unsure. If the blood test comes back positive they will do an ultrasound to see what is going on, then give you a drip with some heparin (an anticoagulant) and you’ll probably be back home in a week or two. Life goes on, and then you start reading about it on the Internet. It affects some people worse than others but generally it is a health condition that can be managed, there is nothing to be worried about, and what will be, will be.

Of course, with hindsight, I would like to have been diagnosed correctly after my first episode of thrombosis. Had that been done then I could have avoided the (more serious) Pulmonary Embolism (clot in the lungs) I experienced a year later. For accurate testing you need to wait 3 months, come off warfarin/Coumadin and have two blood tests (twice, as a safeguard against lab error).

And of course, understanding risk is a personal thing. If you want to get tested please go ahead and do so. But be aware that the result is unlikely to change the risk of thrombosis but you may find yourself declaring the tests when applying for medical cover and travel insurance.

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