Update:
We did see the 2nd opinion endocrinologist at Children's who basically said the baby looks normal & let's just re-check the calcium, phosphorus & magnesium again in one month. This was the same Dr. who had told me to give low calcium formula! Imagine if I was a less informed parent, had listened & terminated exclusive breastfeeding just to be told he was fine anyway!!! Ugh. Anyway, regarding the PTH & the d125 numbers being so far out of range he basically said that calcium homeostasis is a very complicated process & because those two labs were drawn individually (& not at the same time along w serum & urine calcium, etc) they couldn't really tell us a whole lot. He also said that calcium levels in infants are not necessarily well understood because it's not a normal lab for infants so we don't have a huge body of evidence and that it's possible the normal range is higher than where it is currently set. I think this says a lot since this particular endo was a co-author on most of the more recent journal articles I pulled up on neonatal hypercalcemia. Oh, and he told me to give the baby a d3 supplement "you know, the kind in the little dropper by Johnson & Johnson, because breastmilk is very low in vitamin d". This was after I had already told him about Carol Wagner's research. Sigh...

My d25 level was 81, by the way. I also had an interesting email exchange with someone from the Vitamin D council. He told me that vitamin d researchers speculate that the current range for infant calcium levels are artificially low due to decades of vitamin d deficiency in the populations the reference ranges were based on. 

So, if a mom comes to you saying her baby is hypercalcemic and an MD told her to put the baby on low calcium formula, if the serum calcium level is under 12, not going up and the baby is asymptomatic (typical symptoms include FTT, poor weight gain, emesis, constipation, lethargy, increased urine output) I would encourage the mom to *very seriously* weigh the risks versus benefits of giving formula. 

One of the responses I got in this thread was relating a case where a mom did follow the MD's advice & gave low calcium formula for a short period of time (maybe 2 weeks?) The baby's calcium level did slowly go down. But my baby's has also slowly been going down, WITHOUT the low calcium formula intervention. 

Thanks everyone for the support and encouragement. I expect the levels to be down into the reference range by the next blood draw. If they're not we're looking at more bloodwork, urine samples and probably FISH testing for Williams Syndrome (so unlikely but apparently our endo has seen an atypical case before). I'll post again after the next set of labs. 

-Laura Wasielewski MS, CCC-SLP, IBCLC
Los Angeles, CA

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