PKU test required?

[pacifica]

Hi all. I'm at the hospital and they want to do a PKU test, heel prick. They say it's required. Are you momma's doing this?

[kalamos23]

We did decide to do it, but I made my DH hold her. We didn't get anything else done (vaxes or eye goop), but thought it was important if there was any genetic or endocrinal (sp?) stuff going on, that we would rather know earlier rather than later.

You can have your ped do it later if you want to have more time to think about it, DD's was done at her 4 day well visit. DH held her up on his shoulder so the blood was more in her feet and it was really quick and she was bugged more that the nurse was holding her foot than anything.

[*Jade*]

We did it, because PKU is something we'd need to know about very quickly.

If it helps, my DS had numerous heel pricks in hospital (some where they had to squeeze blood out) and he slept through most of them. That said, he screamed bloody murder whenever anyone tried to change him!!

[MaerynPearl]

We will not be doing it until DD is about a week old, because its less reliable before breastfeeding is established... but we will be doing it then.

[lillymonster]

We are going to do it, but looking at ways to make it friendlier, like nurse her while it's done or do it 2-4 days later.

Personally, I am doing it because it's a genetic mutation, and very serious if not caught in time. I don't know specific treatment options, but it can be missed if your child gets sick and you just take them to the pediatrician as they are getting worse and causes severe mental issues because it's not caught in time. I watched it on Mystery Diagnoses once, it's something I would get done IMO, because the diet needs to be changed right away.

[karika]

no

I did not allow the test to be done. In the information from the test website, it is stated that the sample is kept until the child is 21 years old. I am not comfortable with that. You can write in and ask to have it destroyed. If your child received the vitamin k at birth, it will be hard to get the necessary prick since the vitamin k clots the blood. It is brutal IMO how they do it. dd1 had it done because I didn't know all this then. It is a test to check for 21 (I think) rare genetic problems. IMO any of those problems would present themselves anyway and due to my beliefs would not change how I raise or interact with my child. Mostly it was the big brother aspect of them keeping my child's DNA on file for 21 years that made mme very uncomfortable, I mean why would they do that? It has to be some orwellian thing IMO. Oh and fwiw there have been people that get false results that just make life harder. IMO it is just a way to get the DNA on file, why I don't know.

[CherryBomb]

Absoutely, we do it every time. I would never consider not doing it.

[Lucy&Jude'sMama]

I did it because its the law in California and as far as I know you can't get around it. This time I think I will wait a week before getting it done and not have it done in the hospital.

[Youngfrankenstein]

Originally Posted by MaerynPearl

We will not be doing it until DD is about a week old, because its less reliable before breastfeeding is established... but we will be doing it then.

This. Our midwife did the test after 24 hours of breastmilk. I'd do it out-patient later but I would definetly do it.

[fruitfulmomma]

We've done the newborn screening (PKU is just one thing they are screening for) with all of our children. It is one of the few things I think is very important, but as the pp's said it should be done a few days later, after your milk has come in.

[nova22]

I wouldn't consider not doing that one, either. In the hospital it was done about 24 hours after birth and after my homebirth, I think the midwife came back at 48 hours, or maybe it was a week ~ can't remember now.

[Qbear'smama]

We got it done, I believe you have to where I live, but like PPs it was a few days after birth, when the MWs came to my house for the first or second post-partum visit. I just wanted to say to Karika, the thing about PKU is that it is a genetic disorder that can cause serious brain damage but, from what I understand, if it's detected with the test, the child's diet can be altered to avoid any brain damage and they can live a normal life, so I'm not sure about the other genetic tests you were talking about or the keeping of DNA, but with PKU I would think knowing would make a huge difference in the way you raise your child, in terms of the baby's diet to avoid major problems. I definitely agree that some disorders that are present will present themselves and there is nothing you can do about that, but that is not the case with PKU, as I understand it, you CAN prevent damage to the child if detected early, as I said, through avoidance of a certain protein, I think.

[lillymonster]

Originally Posted by Qbear'smama

I definitely agree that some disorders that are present will present themselves and there is nothing you can do about that, but that is not the case with PKU, as I understand it, you CAN prevent damage to the child if detected early, as I said, through avoidance of a certain protein, I think.

It's Phenylalanine, which is found in milk, eggs and common foods. Your child *may* have to be on a special formula, for life, I am not sure of alternative options or treatments or what the diet is exactly, but it is a major diet change that can safe your child from severe mental and developmental issues.

The thing is also that is presents itself as other issues, so a doctor would not normally test for it if you took them in, because the first symptoms are vomiting and rashes, which can be anything. Only when your child is to the point of seizures and developmental delays will they consider more serious options (if they put it together), and honestly with doctors blowing off a lot of issues as nothing serious, it's something I would rather test for now then dealing with doctors who blow off serious issues as "normal" and not getting the help you need in time.

Gosh, my daughter had food allergies with blood in her stool and it took 2 years for a DR to admit that maybe she was allergic and it just wasn't showing up on test. I would hate to go through that with something worse!

[taffywelsh]

you really ought to do it, especially to make sure the child is not congenitally hyphothyroid. If they catch that in the first week, it can save the child from otherwise irreversible mental retardation.

[Jayray]

We did it. Our birth center does it at the 3 day home visit. DS nursed through it, although he did cry because it hurts a little. It does weird me out a little that they keep the samples, but I imagine they're just in some warehouse somewhere where no one really does anything with them.

[karika]

I am not a fan of webmd, but this popped up first in a search. http://www.webmd.com/parenting/baby/...nuria-pku-test

"Babies with PKU need foods low in phenylalanine to prevent severe brain damage. Phenylalanine is found in most foods that have protein, such as milk, cheese, and meats."

I don't feed foods to my infants, just breastmilk (they would need to ingest the foods to have a reaction). I don't eat or ingest any form of dairy(nor do my children, and no meat for dd2 as I am going vegan) . From this site, OP it says you can get a urine test done instead after 6 wks of age. That way you can avoid the storage of your child's DNA in a warehouse somewhere, and get the test. It is all scare tactics IMO. People used to get the vaccinations done without question, now many have found out how they are made and what ingredients are there and so now research is done. All 'normal' medical procedures should be approached with caution and question IMO. The medical industry/pharma/ agra is the reason humans are so sick IMO.
It is considered rare
http://www.wrongdiagnosis.com/p/phen...prevalence.htm

This site reflects how the diet is a likely factor (see Japan is the lowest and consumes the least amount of meat and dairy historically)
http://phenylketonuria.site90.com/

I do not have the brochure that had the website listed that talked about their storage procedure, but this report http://www.nichd.nih.gov/publications/pubs/pku/sub3.cfm has this

"Storage and Use of Samples

States and others who store samples should develop a policy that addresses the following issues surrounding the storage and use of blood samples remaining after newborn screening:

* Length of time that all samples will be stored.

* Ownership of samples.

* Uses, other than the followup of newborn screening, which will be allowed and under what conditions.

* Informed consent procedures. "

See ownership of samples. This is what I do not agree with. If I had been informed a urine test could be done after 6 weeks of age, I may have consented to that as that would be a no harm way, the strip would be destroyed and no one would have broken the skin of my child to remove a bodily fluid (which is not part of my principles.)

IMO the risks outweigh the benefits, just as vaccinations and the other 'routine' things like vitamin k, erythromycin eye ointment, etc.

However, OP I recommend you check your state laws, I just found an old thread on MDC that suggests the hospital may turn you in to CPS for refusing this treatment. Your best bet is to explain that you wish to delay testing until the urine test can be done after 6 weeks old. After all, you will not be feeding the child any meat, cheese or milk until well after that. I also recommend to all new mothers that dairy in all forms be avoided while nursing (and beyond) as the cow's milk protein is rarely processed well by an infant and many attribute it to something else when it is as simple as not eating the bodily fluids of other mammals.

Also I consider it quite strange that all gum in the US with the exception of a few brands now has the warning, "Phenylketonurics - contains phenylalanine" which admits there is aspartame present, yet it is not listed as an ingredient.... hmmmmmm

[lillymonster]

Originally Posted by karika

I don't feed foods to my infants, just breastmilk (they would need to ingest the foods to have a reaction). I don't eat or ingest any form of dairy(nor do my children, and no meat for dd2 as I am going vegan) . [/url]

Even LLL says that you need to give your child some supplementation (not formula) for growth. You can nurse a pku baby, but the blood levels need to be tested because like milk, I would imagine other proteins can go through the breastmilk too. So the levels are lower because of breastmilk, but it still needs to be measured to make sure they get enough for growth.

I know 100% that soy protein can go through breastmilk, and soy is high is in Phenylalanine, along with fish, meat, eggs, and poultry. And while I lived for 3 years with a diet with no egg, soy, legumes or diary because I was nursing my intolerant daughter, I could not imagine also cutting out meat and other proteins as well.

[kalamos23]

Ditto lillymonster - I was on a no egg, soy, dairy, tomatoes diet because of DD's intolerances and I was eating meats and beans/rice mainly with lots of veggies - I lost SO much weight that I don't think it would be feasible to cut those out as well.

[greenmulberry]

A relative of mine recently had a PKU positive baby. It really struck home that it does happen. I personally, would certainly get the test, I would want to know right away if my baby had PKU.

I do concur with above posts that the blood spots in most states are stored, and can be used for research on newborn diseases. I work in the department that reviews and approves these uses for our hospital. There are very strict regulations and controls on how this happens and who can use them, but it is true that they may be used in the future (depending on your states laws) to learn more about things like newborn diseases and how they are screened for (including developing genetic tests). I personally don't care if someone uses my or my babies blood for research, because I get to see first hand how that activity is very very tightly (IMO opinion overly so) regulated, but if that bothers people, then I would certainly get the urine test done. PKU takes a normal person and brain damages them for life without proper diet.

[nia82]

The newborn screening is very beneficial. we will do it, however not at the hospital. The state keeps a sample of the DNA of your baby and can do with it whatever they please, which we feel is horrible, invasion of privacy and they have no rights to our child's DNA. Hence we do a private newborn screening at the age of 14 days, which is when all diseases screened for are actually picked up (e.g. Colorado does it at 2 days and 14 days for that very reason). The testing costs $199, but the private lab will destroy the samples after the screening, which gives us piece of mind.
So you can totally refuse the testing, there is an opt-out in all states. And then do it yourself or skip it, whatever you are comfy with.