Do you do the PKU test? - Page 2

[paxye]

Originally Posted by Tizzy

Anyway, we had DS2 tested as well (it went MUCH smoother), my midwife convinced me that it is a very simple test that could make a huge difference in his life. Here they test for 25 things.
Thank you for suggesting the urine test, so far from what I've been looking up it's only given after 6wks of age. I will research this further because I am much more partial to a urine test.

I don't know how it works in other places but here the Urine test is a govn't run test and they ask for it to be done at exactly 21 days... we do it at home and then send it in...

3- Urine sample screening test

* a few health services have adopted the urinary screening that is done around the 3rd week of life from a filter paper containing a urine spot taken from a damp diaper. The dried filter paper is mailed to the screening centre by the parents.
* this urinary screening test was initiated in the Province of Quebec in the early seventies; it is one of the few programs that exist in the world. It allows the early detection of organic acid disorders, or other disorders which could have been missed by the blood tests done during the first week of life if the protein intake was insufficient to reveal a metabolic block. http://atlasgeneticsoncology.org/Edu...ID30056ES.html

I know two people that did the test at birth and then did the urine test and in both cases it was missed with the heel prick and caught with the Urine test... one was PKU and the other was another metabolic disease.

I do think that the screening is important but I don't think that the heel prick is the best way to do it. Not only is it unnecessarily invasive, but it is not done at the right moment to get the best results.

[channelofpeace]

Originally Posted by MJB

I took my son in for the newborn screen a week after my UC, and will definitely get it done again when my new baby is born. It is just too important to skip, IMO. Could you live with yourself if your baby had one of these conditions, that diagnosed could lead a normal life, and undiagnosed would lead to severe problems or even death, and you'd chosen not to do it to avoid a half-second poke and conspiracy theory fears of the DNA being stored? It's a little blood. The poke is not that bad (I've done the test on newborns who didn't cry at all, most only get irritated near the end when they are tired of you holding their foot) and it doesn't have to be done immediately (wait a week, or even a month-- almost none of the 40+ diseases screened for would cause damage before then).

I took my 9-day-old to the dr after we had UCed. She did a newborn exam and they did the PKU. The benefits very much outweigh the risk/discomfort.

[tessie]

Originally Posted by ann_of_loxley

Currently, they only test for 4 things here in the UK (at a week or two post birth I think). (I know in the USA - they test for like a million things or something lol - But they really only test for 4 here and the fourth thing is rather recent too...they only tested for 3 things when I had my son)

They currently screen for a minimum of five diseases. See here for the NHS site for more info.

Some HAs screen for more, I know mine screens for far more.

The risk of some conditions is low but they also test for cystic fibrosis which is a 1 in 2,500 risk in the UK and early diagnosis and treatment improves long term health.

So, personally I would (and did) get the test. It was done by the midwife, with her in my arms, at home, at around seven days. It was pretty much a non event. Certainly less traumatic than birth!

[ann_of_loxley]

Being mostly an American site - I only ever just add that out of interest cause theres a bit of a difference between a handful of things compared to testing for 60-90+ things. The argument isnt really about whether or not they test for 4 things or 5 things.
I am pregnant and I have a right to be slightly annoying! lol

[tessie]

Originally Posted by ann_of_loxley

Being mostly an American site - I only ever just add that out of interest cause theres a bit of a difference between a handful of things compared to testing for 60-90+ things. The argument isnt really about whether or not they test for 4 things or 5 things.
I am pregnant and I have a right to be slightly annoying! lol

I thought it would be helpful to provide more accurate information as to what is on offer here.

[Aufilia]

Not a UCer, but I saw the topic pop up...

Here, babies are required to do the PKU test at 2ish days and again at 10-14 days of age. They screen for a number of other conditions besides PKU. Interestingly, the method my midwife used to collect the blood was much less painful-seeming than how our ped clinic did it. Either way I hated that DS hated it, but I also felt the screening was worth a minute or two or pain.

[gossamerwindweb]

Originally Posted by MJB

Could you live with yourself if your baby had one of these conditions, that diagnosed could lead a normal life, and undiagnosed would lead to severe problems or even death, and you'd chosen not to do it to avoid a half-second poke and conspiracy theory fears of the DNA being stored? It's a little blood. The poke is not that bad (I've done the test on newborns who didn't cry at all, most only get irritated near the end when they are tired of you holding their foot) and it doesn't have to be done immediately (wait a week, or even a month-- almost none of the 40+ diseases screened for would cause damage before then).

My husband and I discuss EVERYTHING to death before we make a decision. We discuss the pros and cons. The worst case scenario. What we would do and if we could live with ourselves if a decision led to disaster. We discuss vaccines and lack thereof, the metabolic disorders test, UC, circumcision, when to give baby solids, family bedding, etc, etc, etc. So yes... we have thought it out and decided that we were making the right decision for our family.

I am so glad that some babies haven't cried at all! I wish my daughter had been one of them. It was a horrid, HORRID test, and I never want to repeat that. I wasn't in the nursery for her first test, but I had to take her to the lab for her second test a few weeks later. It was just awful. They laid her face down on this board and bent her foot so much that her toes were almost touching her shin. They poked her REPEATEDLY to get enough blood, while my 1-month-old was screaming bloody murder and PULLING herself across the padded board trying to get away. She literally moved herself a good 6 or 7 inches before it was over. A newborn. It took me about 20 minutes to calm her down after and for 2 or 3 days she would wake up screaming repeatedly. I assume these were nightmares. There is NO way I was going to subject my son to the same thing. No way in hell. If her test had been nicer, like the ones you describe, then I might feel differently.

My own history of getting PTSD makes me more sensitive to trauma.... even for newborn babies who 'won't remember it' and 'it is for their own good'

[gossamerwindweb]

Originally Posted by rach&becks

I would also like to hear more about the DNA database kept...??? (I have a friend who is a forensic scientist for the state of Maryland and says she wishes there was such a database to make the solving of crimes a bit easier.... not that I agree... but that makes me think that there ISN't such a database???)

Yeah, hubby and I are quite the true crime buffs. We love hearing stories of forensics solving crimes. If there WERE such a database, things would be much easier with solving many rapes and murders. Of course when I was a kid, my parents refused to let us be fingerprinted because they had heard a rumor that all children's fingerprints were kept in a database.... as far as I know, there isn't a fingerprint database either, unless you have them done by the police.

[rayo de sol]

From reading about the following case, I learned that when people get a pap smear, they keep your DNA in some sort of database, although perhaps it's not always immediately available to law enforcement.

Dennis Rader - for more than 30 years Rader eluded police in Wichita, Kansas, killing ten people and taunting police with the monogram: BTK, for Bind Torture Kill. Using a search warrant, investigators were able to obtain a Pap smear specimen from Rader’s daughter, which had been provided years earlier at a hospital in Kansas. A comparison of her DNA profile from the sample and DNA profiles left at the BTK crime scenes led investigators to conclude that she was the child of the killer. This information, along with other materials from the investigation, allowed police to get an arrest warrant for Rader. When confronted with the information, he confessed to the crimes.

http://www.denverda.org/DNA/Familial...e_Searches.htm

[gossamerwindweb]

it sounds like it isn't a DNA database, per se. But they DO keep tissue samples whenever you have a surgery or a test. I don't know where labs and hospitals can keep so many samples, but they do. I don't know for how many years either. We watched a true crime show where a woman's body was identified with DNA... even though they didn't have any of her family members... because her appendix was in a tissue lab. So not a DNA database, but if they can get ahold of the tissue samples, they can always take DNA from them. Of course they have to know who they are looking for first...

[Serenyd]

I did the heel prick test with my two UC kids @ 1 week old. They test for 40+ metabolic diseases here, including PKU, but also things like congenital hypothyroidism that can cause severe damage and retardation if not caught early. With DD I held her and breastfed her during the stick because I read that can help decrease the perception of pain in infants - and she squirmed a little but did not pull off the breast, so I'm glad we did it that way. I learn a little more and get a little smarter with every baby!

[accountclosed3]

i tried to get it done.

my doctor didn't have the filter papers and couldn't get them from the lab that the state used.

i called the local midwives and they wouldn't give us the filter papers or administer the test.

i called the dept of health to ask them for the filter papers and they gave me the number of the lab.

i call the lab and they said that they couldn't give the filter papers to private citizens, only to doctors who would administer the test.

so that took us back up to step one.

what also happened every time i talked to someone (other than my family doctor who knew we were UCing and was rather supportive of it all things considered) from midwives to health dept nurses to lab techs was "oh, they did it already for you in the hospital." at which point i had to explain that i'd had a homebirth (told the midwives UC), and then they were shocked and told me that i had to go through my doctor to get the papers.

but my doctor couldnt' get the papers, so he couldn't run the test. so we didn't do the test.

we did look out for--in those first few weeks--any markers of metabolic disorders (we were at the doctor about 1-2 times per week the first two months because he didn't nurse right away and was dehydrated at his first appointment). and, we didn't have any problems at all.

i do think that we were blessed in this way.

but if it is mandatory, it should be easier to get the darn filter papers.

[AustinCrunchyMomma]

I know this is an older post but there may be some who like me are still referencing it to decide about the PKU test. Here is the 2009 article from Texas talking about newborn DNA being stored by the state for research purposes without permission of parents. It was only after the state was sued that parents were allowed to ask the state to destroy their child's DNA (although the results already recorded of the child's DNA did not have to be deleted). Hope this helps clarify a bit.

http://www.kxan.com/dpp/news/politics/state_politics/government-taking-newborn-dna-samples-

[newsolarmomma2]

Get the PKU test! it's rare that a babe has those diseases, but for those that do, it is a true lifesaver. heel pricks may hurt, but a little prick is Ok compared to the possibility of making my kid disabled to afford it. Just my opinion.

[indignantgirl]

At what point is it too late to bother with the test?  We've had 4 babies (last 3 UC) and the first 3 were tested.  Our new baby was an UP as well so we didn't have a midwife around to offer the test, and they didn't ask for one when we did the birth certificate (by then she was almost 2 months old so maybe that's why).  We did take her for a newborn checkup when she was 1 month old and the doctor mentioned we might need the PKU test for the birth certificate but didn't act like it was a big deal.

Now my daughter is now over 3 months old and there are no signs anything is amiss so I figured there was no reason to pursue the test at this point.  Am I mistaken in that?  Should I try to have it done?  I do know that the only doctor we know will make us go to the hospital to have it done, as they don't do it in the office.  I'd just like to avoid that, in general, unless it's something critical.

[katterpiller]

I have a question about this also.  Does anyone know why 2 tests are "required?"  I have had my 3 sons all tested, but our 3rd son we had him tested at a few days old but did not go back for the 2nd test they wanted to do at 2 weeks because the first time was such a horrible experience for all of us!  (He's 5 now!)

[josie423]

It's been a while since I started this thread. :) We didn't get our third, a girl, tested, and will not be getting this baby tested either. I am happy with my decision.

Katt, I don't know. My first two only needed one test.

[Katie8681]

Originally Posted by indignantgirl 

At what point is it too late to bother with the test?  We've had 4 babies (last 3 UC) and the first 3 were tested.  Our new baby was an UP as well so we didn't have a midwife around to offer the test, and they didn't ask for one when we did the birth certificate (by then she was almost 2 months old so maybe that's why).  We did take her for a newborn checkup when she was 1 month old and the doctor mentioned we might need the PKU test for the birth certificate but didn't act like it was a big deal.

Now my daughter is now over 3 months old and there are no signs anything is amiss so I figured there was no reason to pursue the test at this point.  Am I mistaken in that?  Should I try to have it done?  I do know that the only doctor we know will make us go to the hospital to have it done, as they don't do it in the office.  I'd just like to avoid that, in general, unless it's something critical.

No, there's no reason to test at 3 months.  If she had phenylketonuria you would be seeing evidence of significant brain damage by now... thus the reason PKU is tested for with a simple blood test at birth.

[indignantgirl]

Originally Posted by Katie8681 

No, there's no reason to test at 3 months.  If she had phenylketonuria you would be seeing evidence of significant brain damage by now... thus the reason PKU is tested for with a simple blood test at birth.
 

Thanks for responding; I'm glad to hear it.  The midwife who did the last two acted like it was just a thing that had to be done for the birth certificate, and the doctor who saw this baby for a checkup at 1 month (so we could get the b/c) said "Eh, she looks fine, but you can bring her back if the state says you need to have one done."  If anybody had made a bigger deal of it I would have had it done (assuming I was around any sort of medical professional who could do the test for us in the proper time frame).

So...what IS the proper time frame?  Does anybody know?

[Just1More]

I think ideally it's 72 hours after your milk comes in.  Sooner, obviously, for a ff baby.