pku

[homemademomma]

so my mw called us yesterday to say that apparently she didnt get enough blood on the card for the lab to do the metabolic screening tests. dd is 3 weeks old now- do you think we should redo the test?

[alegna]

Go with your gut. We didn't do it at all.

-Angela

[happydoulamama]

According to a text I have, PKU is pretty rare: 1 in 10,000 to 15,000 white babies. Less common in other races. But the problem is that sometimes there can be no symptoms until it's too late- months later when irreversible retardation, cerebral palsy, etc can set in.

The book I have also says that you can test a baby at any age- but it's especially important to wait until bf is well established (which it certainly must be by now!)

Go with your gut!

[eco_mama]

I'll agree w/ the pp's and say, "Go with your gut."

We didn't do any tests at all.

[homemademomma]

Originally Posted by happydoulamama

According to a text I have, PKU is pretty rare: 1 in 10,000 to 15,000 white babies. Less common in other races. But the problem is that sometimes there can be no symptoms until it's too late- months later when irreversible retardation, cerebral palsy, etc can set in.

The book I have also says that you can test a baby at any age- but it's especially important to wait until bf is well established (which it certainly must be by now!)

Go with your gut!

i should have been more specific- its not really just a pku test- the test screens for like 25 extremely rare metabolic disorders. this is the ONE test that i felt was important (even though the disorders are rare, they are treatable if found esrly and can cause death/retardation if not treated)- we didnt do any other newborn procedures ( we even eaived the newborn exam until the 3rd day) and we don't vax.

however now that she is 3 weeks old, would she be showing sings of these disorders if she had them? or no?

[lorijds]

Many of those disorders don't manifest themselves until months after the baby is born. I'd get it done; if you were comfortable doing it in the first place, why not complete what was started? I mean, if the reasons for doing it the first time still feel valid to you, I would think you would want to go ahead and resubmit a new specimen.

[G&B'sMama]

If the blood was drawn shortly after birth, the test has to be repeated anyway if you want accurate results. That is why they usually draw blood at birth and at 2-6 weeks for PKU (and other screenings). It's one of those things where the government figures that since they have the baby in a setting where they can get the blood to do the test- they should have the tests done, even if its not as accurate as waiting several weeks when the parents might not bring the babe in for a well check. In my opinion, this is pretty crappy. Luckily, our mw gave us the option of opting out, or not having the test done until our last mother-baby appointment at 8 weeks post partum. We decided that it was worth doing the testing because there is a relative in DH's family with a rare disorder. Our MW wrapped DS's son in a warm washcloth and held it there for several minutes, then gently lanced his foot. He didn't even cry. The warmth brought the blood right to the surface and plenty came out with out squeezing and hurting him. This was a huge contrast to how the blood for the test was extracted from my DD when she was born, only to repeated several weeks later in the pediatrician's office. I only wish I had been smarter about this stuff then. :

[ZeldasMom]

Originally Posted by homemademomma

its not really just a pku test- the test screens for like 25 extremely rare metabolic disorders. this is the ONE test that i felt was important (even though the disorders are rare, they are treatable if found esrly and can cause death/retardation if not treated)

ITA. I would get it. If your child does have one of the disorders this test screens for some damage has already been done, but you can prevent doing further damage.

Some people skip this test because they don't like putting the baby through a heal stick. Warming the foot with a heating pad before the stick and nursing both help make this easier on the baby.

[eco_mama]

sounds like the newborn screening test

[coloradoalice]

It is called Newborn Screening here.

I would go do it, just because all the diseases are catastrophic if undetected and totally treatable if detected. It's the only test we subjected our babies to.

To make things really easy on the baby you can get a disposable diaper and put very warm water in it and secure it to her foot for about 20-30 minutes before they do the blood draw. The longer the better. Then make sure they use the needle dispenser type poker (I can't remember what it is called). Not a lancet, that can cause damage. Anyway, if the foot is nice and warm they just use that little poker thingy and the blood just flows. My son actually slept through the whole thing, I couldn't believe it!!! He kind of startled when the poker clicked, and that was it. When they did my dd they used a lancet and her foot was cold and they had to poke and squeeze and she screamed and screamed. It was horrible. But now I know that it doesn't have to be!

[sapphire_chan]

Well, at this point you know your baby is *not* allergic to your breastmilk.

The tests are still accurate at 3 weeks and some of the diseases can take awhile to develop and some are only triggered by particular foods, so I'd go for it if I were you.

[maxmama]

Originally Posted by sapphire_chan

Well, at this point you know your baby is *not* allergic to your breastmilk.

Newborn screening doesn't test for allergies, but for metabolic disorders (among others). I'd go for it; as a PP mentioned, all the disorders are both catastrophic and treatable (except sickle cell).

[happydoulamama]

No, it's not that the baby would be "allergic" to the breastmilk, it's that the baby would be unable to properly digest the proteins and later on develop significant and debilitating problems. There often are no signs and symptoms until its too late.

[Peppamint]

I was telling my mom that we forgot to do the PKU test for Audrey... the midwife didn't ask and neither did the NP at 1 day old or the ped at 2 weeks old.

She's 8 weeks old now, I guess I'll ask our ped about it Monday when we go in for her 2mo checkup.