# Pros/Cons of PKU test?



## VaMountainMomma (Jun 6, 2005)

Sorry, I'm not sure where to put this, but since it's birth related...

Did/are you going to do the testing for PKU/et al metabolic disorders? What are the pros and cons? The MW said she'll can do it at the 3-day PP visit, so Baby won't be stuck right away, but I would rather him not get stuck at all at such a wee age. Are PKU and the other stuff as dangerous as the brochure makes it seem? I know they are serious problems, but what are the chances that it would go unnoticed to the point of causing long-term damage?

Just curious... thanks!


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## USAmma (Nov 29, 2001)

Check out this thread.








http://69.20.14.30/discussions/showthread.php?t=439346


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## RockStarMom (Sep 11, 2005)

I had it done. It was traumatic for my baby and me because the person who did it made a tiny prick and then squeezed her foot for several minutes- they said it was the only way to do it, and I found out later that it doesn't have to be done that way at all.








The diseases it tests for are very, very rare, but if your child ends up having any of the diseases, it's impossible to know until after the damage is done(if you don't test). My city's newspaper had stories about a couple of local kids in the last year or so who had the test done and their diseases were caught, so that made me feel that it's worth it to get the testing done.
If you decide to, just make sure the person who does it doesn't "milk" the baby's foot forever- it can be done quickly and relatively painlessly.


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## lilyka (Nov 20, 2001)

the test is simple enough that it wasn't a battle i was willing to face. and the diseases though very rare are dissasterous once you notice symptoms. it is not something I would go out of my way to do if it weren't required but it also wasn't something big enough for me to fight (and unlike eye goop and vit K it woul dhave been a fight. they didn't get enough blood the first time and within 24 hours of filing the birth certificate the state had called inquiring about why they didn't have PKU results. you would think they were testing for infections diseases they way they are on top of it.)


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## VaMountainMomma (Jun 6, 2005)

Thanks for the link USAmama, I tried to search, but alas! The 4-letter word minimum.

Thanks for the info M and Lilyka. It is a requirement for my state, so while I'll be declining the eye ointment and vit K, I guess this one wouldn't be that bad.


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## katt (Nov 29, 2001)

We will be doing this test, although I don't think we need it. But, we'll be doing it about 1 week to 2 weeks after birth. If they take it at birth, they'll be doing it again later because the first one is inconclusive. how dumb is that?


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## DreamsInDigital (Sep 18, 2003)

I declined it with my youngest. By the time it was supposed to be done he had regained to birthweight so we knew he was digesting his mama milk just fine.


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## maxmama (May 5, 2006)

Quote:


Originally Posted by *DreamsInDigital*
I declined it with my youngest. By the time it was supposed to be done he had regained to birthweight so we knew he was digesting his mama milk just fine.

Though babies can have metabolic disorders that cause neuro damage and still grow appropriately. One doesn't preclude the other.


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## jeanine123 (Jan 7, 2005)

This was the only standard newborn procedure we had done. I felt it was important to know if he had one of the disorders that is tested for, even if they are very rare. My midwife did it at our 1 week check up at our house. She had this nice flannel warm pack that she held on his foot for at least 10 min. Then I stood up and held him while she pricked his heel (gravity at work). He did cry some but not nearly as much as my first ds did when they did it in the hospital (no warm pack to get the blood flowing, lying flat on his back so no gravity helping or mommy holding just standing next to him, if only I knew better). She did have to prick him again to get enough blood, guess his clotting was alright even though we didn't get the Vit. K.


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## mothragirl (Sep 10, 2005)

it is the only standard procedure that we did also. we did it at 3 days and 2 weeks.


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## Pandora114 (Apr 21, 2005)

Having it done 24hrs after birth renders inconclusive results because it's testing for metobolic disorders, which means, baby has to metabolize food, to acctually pick up any abnormalities.

Yes I had it done with DD. Sure the diseases are rare, but hey, I rather know than not know and risk permenant brain damage you know?

It's just stupid to do it right after birth when the kid hasn't eaten anything or had a chance to acctually metabolize the food.

Wait 3-5 days PP and then give it a go. And BTW, NURSE While they do it. Put a warm cloth on the babe's heel about 15-20 mins before the procedure, nurse during the procedure, and then babe will hardly notice it. My DD barely made a peep. I nursed her during the whole test. And did the warm wash cloth thing to minimize the need for milking.


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## earthmama369 (Jul 29, 2005)

We did that one with dd and are definitely doing it again after ds is born. The chances of either of them having one of the disorders tested for are low, family history-wise, but they are treatable *if caught early* and devastating if not. I've worked with clients, mostly older (before PKU testing), who had some of the disorders tested for, like Maple Syrup Urine Syndrome, and it was so heartbreaking and frustrating to know that a lot of the damage their brains and systems sustained could have been avoided with a simple heel prick and early intervention. Their lives could have been utterly different.


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## NJ*Doula (Apr 14, 2006)

.


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## sapphire_chan (May 2, 2005)

The diseases are both devestating and preventable. Many babies barely notice the prick if it is done while nursing by someone with a clue.

Ergo, my plan is to pay the extra money and have the full spectrum test done by one of the labs that offers that as an option.


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## cottonwood (Nov 20, 2001)

Quote:

I've worked with clients, mostly older (before PKU testing), who had some of the disorders tested for, like Maple Syrup Urine Syndrome, and it was so heartbreaking and frustrating to know that a lot of the damage their brains and systems sustained could have been avoided with a simple heel prick and early intervention.
Or with awareness and education. Maple Syrup Urine Syndrome typically produces several obvious symptoms in a newborn.

If you (general "you") are really worried about these diseases, you'll be on the lookout for symptoms and not assume all is fine until the test results come back (which, for conclusive results, can take up to a month with re-testing) so that treatment can begin as soon as possible.

ETA: Also, be aware that different states' standards for the test are different. If you are concerned about all rare diseases, request that you have extended testing, rather than just whatever standard test the state suggests.


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