New here and PKU question

[kangaroo_mom]

Hi ladies, I just posted on the due date rant thread, since I've had issues with my due dates as well. In anycase, I have a couple questions about PKU. This will be my 3rd child and 3rd homebirth. We didn't do PKU with the other 2 kiddos. I had read a bunch and come to the conclusion that most PKU babies are born albino anyway, and if a doctor told me that my baby was PKU, I would still breastfeed. We try to limit dairy and sugars anyway (since my 2 DDs are fairly lactose intolerant) so the whole PKU diet wouldn't be too much of an issue with us. In anycase, I always felt confident in our decision, but recently I ran across some other information that mentions how PKU tests for a whole bunch of different metabolic disorders, not just PKU. Okay, so I feel like a complete moron now that I didn't pick up on this sooner.

So now I'm second guessing myself and wondering if I should get it done this time. My midwife refers people to either their family doctor/pediatrician or the public health (WIC) office for this test. I really never wanted to bring my newborn into the germy WIC office and that is the cheapest route to go to get it done. I have a family doctor (the one I went to see about my ultrasound) that wants to see my baby 2 days post-partum, but we do not have insurance and he charges $100 a visit. I know PKU isn't really all that accurate until about 4 or 5 days post-partum when they have milk in their bellies. Plus this new family doc does not know that we do not vaccinate. I have heard of a local pediatrician that does not badger parents about not vaxing, but I have yet to interview/meet him. So I guess I am just confused and second guessing myself now. I'm wondering if I should go ahead and get the test, and secondly, should I get it done at the germy gross WIC office or pay the hefty cash to see an actual doctor and get it done there?

Any advice or research you ladies could send my way would be great!

Thanks!

Jenn ~
busy mama to 2 sweet princesses (ages 3.5 and 21 months) and EDD #3 supposedly any day now!

[MrsMoe]

The WIC office isn't germy gross...

[Tummy]

I have had the PKU done with two of my three hosp births. My last hosp birth I refused.
My first HBAC I did get the PKU done, ONLY when she was 3 days old, one prick, not two tests.
My last HBAC we did absolutely NO TESTING WHAT SO EVER.


I would definantly not get the PKU if you do chose until the baby is at least 2 days old.

I have been told my many the reason they do two test, one right after birth, then one before you leave/ or on the second day of life is due to the fact that the first PKU is never accurate. That you cannot get a true PKU screening until the baby is at least 48 hours.

Good luck with your decision

[crsta33]

I doubt the health department (WIC office) is any germier than a regular doc's office...sick ppl go both places.

If my midwife weren't doing the test here at home, we'd go to the health department here in town. I could go to my peditrician, but it's a 45 minute drive and the health dept is right down the street. One of the midwives we considered doesn't do the test (she said she'd be trained and tried to do them a few times, but she always messed them up and they had to be redone anyway), but the one we ended up with does them herself.

We'll take the little guy to our ped when he's 2 weeks old...she actually told me at dd's checkup to call her at home if we needed her to come out after he was born. How cool is that?

Christa

[samsmamma]

I'm going to do it at my 5 day ped visit. In NYC they check for a bunch of other things too, and I feel personally there is no reason not to screen.

[flyingspaghettimama]

I ordered a kit from Pediatrix that is a very full-spectrum panel, and my MW will take it after 24 hours - 48. http://www.pediatrix.com/homepage_sc...d=94&oTopID=94

It tests by just about everything. In my state, there are many tests that are not done with the PKU - each state does a different panel. I figure, it can't hurt any more than the usual heel prick, and it's really amazing the things that can be done (mostly nutritionally) if you do figure out the underlying problems. If cost is a big problem for you though, it does cost about $80.

If not for that, I'd rather risk the WIC office...wear your baby in a sling close to you, and wash your hands...just like in any doctor's office.

Adding: Here is a chart from the March of Dimes on testing - it says after 48 hours is optimal - days 3-5. http://www.marchofdimes.com/professionals/580_9622.asp

[flapjack]

Originally Posted by crsta33

We'll take the little guy to our ped when he's 2 weeks old...she actually told me at dd's checkup to call her at home if we needed her to come out after he was born. How cool is that?

Christa

That's the big reason our GP is now such a homebirth advocate: the family GP visits everyone after birth to check that the baby only has two arms and legs and so on... she normally does hospital visits, which were the highpoint of her job. Then, of course, she met the first homebirthing family of her career (us) and in the last 7 years has become a convert

[zjande]

After reading about the zillions of illnesses, some of them fatal or leading to mental retardation that we otherwise might not catch until it's too late, that the PKU test actually tests for, I personally would never refuse the test. I decided that one heel prick is worth the potentially life-saving knowledge the results could offer.

[LeAnnie]

Depending on which state you live in, the PKU actually tests for a whole lot more than the PKU disorder. There may be up to 50 metabolic disorders included in the test, most of which can cause permanent damage if undetected. I've never heard of a complication from having the blood test done, although it is surely a minor procedural inconvenience. The standard policy is to have one done at birth or shortly afterward and then again several days later to test for metabolic disorders that may surface after baby is eating and metabolizing milk. The 2 weeks is arbitrary, just because that is when most babies go for a check up.
I would never refuse the test either. Your midwife ought to be able to do it at home for you. Venturing out just for that seems like a lot of work. Good luck with your decision...