Afp level testing

Hi. My son at 10 weeks old had his first afp test and it was at 211. I had a look at the afp chart for children with bws and non bws. Can the result of afp level indicate if u'r child have bws or not? What was u'r childs afp level each month? How often do you do the afp test? I see on American website they recommend every 6 weeks and this website every 3 months, why the difference? Not sure how to handle blood drawings through vein every 6 weeks until 4 years old? Any tips please?

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  • Hi there,

    We don't do the AFP tests for our son so hopefully someone will answer soon who knows a bit more about the specifics you are asking. I was told the important thing is the trend over time rather than the individual test result, so they are watching for a large increase. I don't think the AFP level itself can indicate BWS, have you had genetic testing for your son ? The American screening protocol is different to that here in the UK, so your geneticist or paediatrician should be able to advise you how frequently your son needs testing.

  • My daughter had afp testing at 6 week intervals up to age 3. However, the geneticist we have seen at Great Ormond St has said that its not necessary. He says that the more up to date research has shown that scans are more likely to show anything abnormal and the afps can rise and fall for other unknown causes. We had this happen to us when she was 4 months old, and had an MRI scan to check all was well (which it was).

    We didn't have the blood taken from a vein, they usually did a heal prick. She didn't mind much at all even when they were taken from a vein. They were over in a few minutes. As a baby, she didn't really notice much. As she got older, she was happy to get a sticker afterwards!

  • Every 6 wks and watching for trends and any large increases. Have been told picks up tumour quicker than the scan would if one is to appear?

  • My son had a liver tumour and is 6 months in remission. He had afp done every 4 weeks and ultrasound every 3 month. I think I would rather have an afp done as they detect Disease so more chance of a tumour being picked up at 6 week intervals. If there was a tumour the afp would be in the thousands so they would know there was a problem. My sons afp was 10,000 when picked up and that was in 3 months. So afp rises fast when there is a tumour. His is now 29, and we are at hospital this morning to have it checked :)

  • If you don't mind please respond to my question below I think I put it in the wrong spot thank you

  • Hi carladrew you said your son is 29 mine is 5 months if you don't mind can you share his journey in adulthood I have been wanting to ask someone this but I have been unable to find an adult with BWS. I was told at age 8 basically the syndrome stops?

  • I think carladrew was referring to the Afp level rather than his age. however I also would be interested in hearing more about the journey into adulthood with people who have had tongue reductions.

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