Originally Posted by Ambrose
So... would it be possible to essentially do the newborn screening on a toddler? My daughter is one of those "allergy" children with no positives to allergens. They did her PKU only a couple hours after she was born. Would it be feasible to do a pediatrix.com one and have relatively accurate results or is it strictly a newborn thing.
Yes. It is absolutely possible. You have to call Pediatrix directly. They have a 1-800 #.
Newborn screen does include many things in some states...more than just metabolic disease, as mendomidwife mentioned, so can include blood disorders (hemoglobinopathies).
Originally Posted by ~Mom2thhts~
We will defintely do the test. Our 2nd dd came up positive for Galactosemia. With this disease I had to quit bf until the test results came back, which took 5 weeks. We had to go to a genetic doc and have the tests done. It came back that she didn't actually have the disease but was a carrier.
We know a mother here in town who came back positive for Galactosemia with her child. Her geneticist told her that she did NOT have to stop breastfeeding, but she had to fight for it. It turned out that her son had a rare, non-severe form, and was able to breastfeed.
In metabolic disease there are no pat answers. Everything is person specific. And you have to know who to talk to.
The other thing is that this was NOT a false positive. Again, in metabolic disease, carrier status IS important. Carriers are often affected AS IF THEY THEMSELVES HAD THE DISEASE. So....it is important to know for a variety of reasons.
Angela, saying you would be forced to stop breastfeeding is sort of like saying you would be forced to have the GD test. There is no reason that you couldn't keep breastfeeding while waiting for a galactosemia test to come back. 6 weeks will affect in the most severe cases, but ONE would see that in one's child.
In things like the actual disease PKU studies are showing that a combination of medical food and breastmilk are actually beneficial.
Again, metabolic disease is a new and smalllllll field. What is not known now, may be known tomorrow. And what is known now for treatment can change.
In most metabolic diseases it is actually very important that the child continue to breastfeed...
Originally Posted by mommaJ
i think we'll wait until a week pp and do it then.
You need to follow the directions of the lab who is running the blood work. If they say 3 days after birth, do it then. They are very specific about WHEN it should be done, even with children with siblings with a metabolic disease.