Rise and fall of AFP

[cmr2010]

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

[Amh22]

Hi, my oncologist says that AFP can fluctuate with out tumors while AFP is below 100. Dont worry some children have fluctuations. Please look for facebook group for hemi and bw. They can give you a lot of information. I have read many cases related to AFP fluctuations with out tumors. Good luck!

[cmr2010 in reply to Amh22]

Thanks so much for the reply!!

[charlilriley]

My sons afp was 353 at diagnosis of bws the next was in the 100s then 3 then 9....no tumours....i too have been told it can fluctuate up and down and that the afp levels in bws babies/toddlers are usually higher than 'normal' anyway and fluctuation is common....if it trends upwards and is high, as in 100s or 1000s then thats an indicator of possible problems!!

[cmr2010 in reply to charlilriley]

Thanks for the reply!! If you don't mind me asking, how old was your son at diagnosis?

[charlilriley in reply to cmr2010]

Kidney problem and size picked up at 16 weeks pregnant, polyhydramnious (another indicator) diagnosed at 22 weeks pregnant, over large placenta and chord at birth, 4 weeks early birth 8lb 10 oz and 60 cm long, many many appointments, hemi hyper plasia picked up at 13 months ....finally diagnosed with blood test this may (19 months old)

[charlilriley in reply to charlilriley]

Sorry i should say in case it makes a difference to you the 353 from diagnosis was from blood taken previous, around 11 months i believe....