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PKU Test

post #1 of 17
Thread Starter 
I am trying to decide if I want to have the first PKU test (they do two- one within a couple days of birth, and one within a couple weeks of birth) done.

Anyone have any thoughts on this? Any good reason not to, besides that the heel stick causes the baby pain for a minute?
post #2 of 17
well, there's the database that states are keeping. They're keeping dna for 21 years in my state. I'm not that comfortable with that. I talked to my midwife about it and she gave me a form that states that I want my kids dna destroyed and not stored. Who knows if the state will actually comply though. They're testing for a lot more than pku. It tests for about 16 things now. It might be good to know these things, but at the same time, it might be bad to have so much information about your child known to the gov't. I don't know if these records would be used to exclude kids from insurance covereage, ec. in the future. I'm not sure I'm going to have the pku test done.
post #3 of 17
I skip the first one but do get the second one. Its not done by the State here but by indy labs...the first one is sort of pointless ebcasue the anitbodies they are testing for have not yet come through in the blood stream.
post #4 of 17
We will definitely not have it done at the hospital. It's not going to have accurate results until after breastfeeding for at least 24 hours. My milk doesn't come in fast enough to have it done at the hospital. I havn't decided yet if we will do it at some point later. I am researching what my state does with the information.
post #5 of 17
My Bradley instructor said that while she used to advise moms to wait until 24-48 hours after their milk came in, she is now advising them to test as soon at 24-48 hours old, because a couple of the things our state tests for aren't reliant on breastmilk being in the system for that long, and are important to determine as soon as possible. And then to follow-up testing once the baby has the breastmilk in his system.

I delayed it until they were like two weeks, I want to say, with my older two? I am undecided at this time about what I will do for this baby.
post #6 of 17
I will be getting the 24 hour test. One of the things they test for is a metabolic disorder that will render the child severely handicapp. It can be controlled by diet though. So that is important to me. The risk is just too big, especially since its only a heel stick.
post #7 of 17
Popping in from October here. I'm glad we did get the newborn metabolic screening done. My DD's showed a marker for galactosemia, and while it was a nightmare waiting for the results for the actual diagnostic test, it was worth it in the long run. She ended up not being galactosemic, but if we had not done the screen and she did have galactosemia, breastmilk would have been very dangerous for her to have. She is a carrier for the Duarte variant, and my husband and I need to be checked as well to see if we both carry the gene, b/c it could affect future children.

So I personally think doing this screen is important. We only had one done, the one 4 days after the birth. It caught something that could potentially be life threatening but is easily treatable.
post #8 of 17
I am due with my 4th in February, though I haven't been active on this DDC I still check in. My 3rd was diagnosed with a metabolic disorder with her first (24 hour) heel stick. She has Biotinidase Deficiency. It is easily treated with a daily dose of biotin (which is a B vitamin). As long as she has that daily dose, she should never show any signs or effects of the disorder. If we didn't start her in biotin immediately, however, she could have suffered with deafness, seizures and even death. The test checks for enzyme activity for her particular disorder, and other metabolic disorders, so these are accurate immediately, without waiting for 24 hours of milk. I know her disorder is rare, in fact we had never even heard of it before her diagnosis, but there is no way of knowing if your child is one of those rare ones that will be affected or not. It was certainly worth that minute of discomfort to get her diagnosed and treatment begun so quickly and to know that she should never show any signs of her disorder.
post #9 of 17
I'll definately get it done. It's interesting to read that some of your babies have it done at 24 hours - my hospital doesn't do it until 46-48 hours after the birth. (It was 48 hours after when my first was born and then the state law had changed to 46 hours or later when my second was born). They never did a second test with either of my kids. My milk does come in rather fast though, so maybe that plays a part.
post #10 of 17
Thread Starter 
Thanks for all the posts! My thoughts are leaning towards getting it done. The benefits seem to outweigh the negatives. I wonder what AL does with the dna and why would any state want to keep that on record for so long? That strikes me as strange. However, since there really doesn't seem to be any physical or medical risks involved, I guess I'll do it.
post #11 of 17
Hey Cagnew, I think your baby is sticking...
post #12 of 17
Thread Starter 
whoops
post #13 of 17
Thread Starter 
City: LOL. Yeah, no doubt about that! I have just been reluctant to remove it from the signature for the same reason that I won't write the babies due date on the calendar. You get a littl superstitious about that stuff after 2 m/c.

But... you're right. Time to take the plunge....
post #14 of 17
I'm just happy for you, that's all.

On topic: Thanks for the heads up, mamas. I asked my MW about the PKU yesterday and she doesn't do it but says the ped can do it when we go for the first visit at 7 days. So that's the plan for now.
post #15 of 17
We'll do it, it's just a heel stick and both of my kids nursed right through it without complaining at all.
post #16 of 17
My midwife will do it at one of the postpartum visits, so I want to do it. I figure the disorders it screens for are nasty enough that I want to know about it.
We don't want to do the eyedrops and I want to delay vaccinations (actually, I don't want to do most of the stupid ones at all, but I am not sure if we will be able to do school if we skip some of them).
post #17 of 17
motherbirth, which state do you live in? Some states are easier to get waivers than others.
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