Have you tested your children for APS and/or Factor V Leiden?

One of our three children has my Factor V Leiden (FVL) gene (she is 5 years old), yet it's our older teen daughter who has been hospitalized many times with migraines, walks around dizzy much of the time, and has bouts of fatigue.

I came across an old study from 2000 today. Those researchers found that "the presence of APLA (antiphospholipid antibodies) was associated with a >6-fold risk of stroke (in children) (OR=6. 08, 95% CI 1.5 to 24.3), and the heterozygosity for FVL increased the risk of stroke (in children) by almost 5-fold." ncbi.nlm.nih.gov/pubmed/108...

This makes me wonder what the combined increased rate is for a child with APS and FVL. Does anyone know?

Did you test your children? Our three children are going to be mad at me (they don't like needles. But if my tests come back positive for APS, they are all going in for blood tests.

5 Replies

  • My children have Sero negative Hughes Syndrome/APS and one of them also has Lupus, as they clearly were and are really very very unwell, at times dangerously so. Of course they went to hospital and are now monitored by three hospitals. However if I had not seen any signs I would not have necessarily had them tested, although in terms of my daughter I would have been wanting her tested at a later age in view of not using the contraceptive pill and being aware of possible pregnancies in the future, however mine got ill at a very young age. MaryF

  • Thanks Mary! I hadn't even thought of sero negative in relation to children who have symptoms. It adds another layer. I have lots to learn.

  • APS is definitely hereditary in my family. My brother and I have been formally diagnosed, but many on my father's side of the family have histories that are compatible. My oldest son who is now 12 began having frequent headaches and dizzy spells when he was nine (and he started having less severe headaches when he was five) He tested negative at age nine, but I am a physician and started him on a trial of aspirin daily recognizing his symptoms were most likely due to APS. This caused a 90% improvement in his symptoms and he has been taking aspirin daily since. At age nine he used to ask to take it! According to Dr Hughes, the tests are usually (but not always) negative until puberty. My son has been having more problems recently, so he is going to get retested soon as he is now well into puberty.

    It really doesn't make a lot of sense to test young kids before puberty unless they are having symptoms that could be explained by APS. Your daughter however is definitely having suspicious symptoms.

  • My oldest son, Will (32 years old), was formally diagnosed with APS two years ago after two bouts with atrial flutter that had to be cauterized. He began with his first symptoms at 8 months old ~ had his first major surgery at 3. He has had migraines, clots blocking off organs, mitral valve replacement, and just recently a stroke. None of my other children have been tested, but none of the others has had the lifetime of problems that he has had. I have been checked for APS and am negative. The only thing we really have in common is another connective tissue problem ~ developing keloid scars. All of the kids know about Will's problems and diagnosis of course, and I am now watching the grandchildren as well. Perhaps I should get them checked.

  • Hi, If ..... you have APS diagnosed via antibodies (it can be diagnosed without antibodies only on symtoms also), I would ask for a test for the Child with dizziness and migraine. Ask your APS doctor about Factor V Leiden (or someone here will tell you).

    My "Children" are soon 40 and 38 and were tested as they wanted to do it. No antibodies. No symtoms either as they say to me.

    Good luck.


    Kerstin in Stockholm

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