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Its the law!! : PKU

post #1 of 14
Thread Starter 
I wasnt sure where to post this but figured that you ladies in here would best know!

I found out today that in California where we will be moving to soon from Australia that it is the law that your newborn gets the PKU test done by 6 days old!!!!!!!

WHAT!!!!!!!!?

Grr, I agreed to the PKU and our midwife did it at around 8 days old. It was very traumatic for myself, dh and most of all our dd. She cried/screamed in pain! We did not think it would be that bad - if we had known more at the time we would of chosen to not do it because the diseases it tests for is rare. We got it done because we figured what the hell, it wasn't like we would be introducing anything into her system like a vaccine would be...

Are there any extemptions to pku? Can they catch us if we have U/C? If we have a midwife, will she report it if we don't get it done? There is no way in hell I want to subject our future children with this test again and I am sorry for dd that we allowed this to happen to her as a newborn.
post #2 of 14
Thread Starter 
We did that - had dd's foot heated up with a hot cloth and the midwife did it immediately after the cloth came off but the blood didn't come out that fast or easily to fill up all of the circles.

Also I have heard its better to breastfeed immediately after the prick not before it is done because the baby might associate the breast with pain?

Know anything about this?

Hmm maybe next time i'll tell the midwife to do it to MY heel first so I can see how much it hurts - even with the warming up of the foot? I don't see how it could NOT hurt?

And aren't those diseases the pku tests for heriditary? If there is no record of htose diseases in both sides of our family then doesn't that mean the chances of our next babies having it are lower?
post #3 of 14
I too questioned the PKU test and was encouraged by the midwife and my baby's family practice dr to do it. (Her dr has a healing center at her home, her husband is an accupuncturist and she is WAY into nutrition and was a former midwife - she has a very natural slant and does not push vaccines)

It was done at day 5 by the midwife just as Hilary described. She took an infant diaper and wet it and put it in the microwave for a bit til it was warm, then wrapped the foot in it for a while. My babe was latched on nursing when she pricked her heel and she did pull off the breast to cry and I just pulled her righjt back in to me and she latched on just fine and nursed again. Unfortunatley, they couldn't fill all the dots with one stick and had to do it again. That time she did cry a tiny bit (so did I!) but went right back to nursing.

All was well with us but I never thought of getting the card! I wonder if I still can? I guess they have their DNA info off of it if they were going to get it. WOW, I hadn't thought of that!
post #4 of 14
Thread Starter 
Hmm still thinking about the whole pku thing. I would do it in a heartbeat if it was painless but that isn't the case and no matter what I come up with, I haven't been able to justify it. Maybe it would of been different if the first pku had not been so traumatic!

Do you know why the law says it HAS to be done within 6 days? I think the longer I wait, the less awful I'd feel about it.
Anyone got links to how long you can delay pku for? And also links to how I can get an extemption if we decide to not do it in the end?
post #5 of 14
I live in West Virginia but dd was born at a birth center in Pennsylvania and I know it was optional for us. The eye ointment was required by law and the midwife got around that by making sure she gave us the tube - whether to use it or not was our option.

I hope you can make peace with this decision. Maybe you can decide to have it done by someone you trust (a midwife possibly or a nurse you feel really great about) and if it doesn't go well, you can have the option to say no, we'll stop here instead of squeezing and squeezing or having to re-stick the heel.

I'm totally hands off medically but was convinced of the need to get it done by my dd's dr. (Her dr refused to do it as she said if you did it wrong, it would hurt the baby and she did not do it on a regular basis. She was concerned that I should have a very experienced person do it. I really liked that she was so concerned for her feelings!)
post #6 of 14
post #7 of 14
My understanding is that it only shows up in cord blood if it's really bad & less severe cases don't show up until baby gets going on it's own. Also depends greatly on the skill level of the person performing the procedure & hydration status of the baby.

http://www.dhs.cahwnet.gov/org/pcfh/....htm#cordblood

http://www.nichd.nih.gov/cochrane/shah/shah.HTM
post #8 of 14
It has been the law since 1980 as far as I know.

I lived in CA when my children were born.

I had the test done for #1 at the ER after a home birth.

#2 was at the ped's office; I had it done because I heard that they also did a hypoglycemia test and hypothyroid test in addition to the PKU.

I waived the test for babies #3 and #4, born 1985 and 1992 successfully since I felt the test was worthless for them.
post #9 of 14
Quikening,

I am in California & you have every right to refuse newborn testing. I have had two homebirths (and about to have another) & have declined to have the tests done.


I highly recommend doing a search of this forum with the keywords "newborn testing".

BTW, where in California will you be moving?
post #10 of 14
I did pku at 2 weeks with dd and 3 days with ds.Look through your state codes for the laws.Most things can be waived.I will probably skip it the next time around.
sara
post #11 of 14
"the only legal ground for refusal is a conflict with religious beliefs and practices"
http://www.dhs.cahwnet.gov/org/pcfh/...ingInfants.htm
post #12 of 14
It was my understanding that the test wasn't accurate unless it was preformed after 8 days which is why they usually do it twice. Something about giving time for the milk to come in and the baby to nurse a lot.

We are planning on refusing it in the hosp. but that will depend upon how much of a stink they cause..don't need cps called on me.
post #13 of 14
I wonder what hospital staff would say if a patient said they'd rather their regular ped did the testing after discharge as opposed to a patient flat out refusing the test?
post #14 of 14
Quote:
Originally posted by amnesiac
I wonder what hospital staff would say if a patient said they'd rather their regular ped did the testing after discharge as opposed to a patient flat out refusing the test?
I have been told this works very well. Just have a pediatrician picked out so you can tell them where you will be following up.

**BTW, this is also a good strategy for the Hep B vaccine.
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