Hi! My son is 22 months, and so far has only been diagnosed with hemihypertrophy. We have started the BWS tests through our geneticist, but the first 2 labs came back normal. At his initial appt, his AFP was elevated to 24. It then increased into the 30s, and we were referred to an oncologist. We have followed the u/s and AFP protocol (the oncologist has actually been drawing blood to check the AFP monthly since it was already in the abnormal range). Once it reached the 50s, the oncologist decided to order a MRI, which revealed no tumor of the abdomen at the time (July). The AFP actually decreased into the 20s in August, and is now back up to around 50 again. The oncologist said she has never seen a child with an elevated AFP to that degree that did NOT have a tumor, but cannot make sense of the rise and fall of the AFP. I find this interesting because she has had pediatric patients with isolated hemihypertrophy and patients with BWS. Has anyone had this situation (the rise and fall) with the AFP blood work? We feel like we are on a constant roller coaster with the numbers. Also, my concern is that we could be missing something by just checking the abdomen. Has anyone's child been diagnosed with a tumor elsewhere in their body? Thanks in advance for sharing any info you have through your own experience
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