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Do you do the PKU test? - Page 3

post #41 of 63

  There are thyroid issues in DH's family, so based on that alone, I felt it was an easy decision.  We got a check up (and signatures for our birth certificate paperwork) with the family dr  a couple days after our UCs and the Dr had us wait  to get it done at the hospital.  I think it was around 2weeks old if I remember correctly. I remember thinking it was odd cause people talk about having it done at birth, and i can't remember the reason she gave for waiting... anyway, I hate how they prick the babies & i'll be looking into the urine test because I'd much prefer that, but either way we'll do it cause I know at least some of the stuff it tests for, our kids will be at risk.

post #42 of 63

I know this is an old post but I would like to add why we will NOT do PKU again. I found out after the fact of DD getting PKU done that the blood is put into a state DNA database without my consent or knowledge. We're still furious that this was done but shouldn't have been surprised as it was a free states test, so I should have known something was up.

 

http://www.cchfreedom.org/issue.php/14

 

PDF with more info

www.edwatch.org/pdfs/Genetic%20TestingParents'%20Rights.pdf

 

post #43 of 63
Quote:
Originally Posted by homemademomma View Post

Quote:
Originally Posted by inertia View Post
Almost every state stores the DNA information from the PKU test in a database that is used for scientific research.


Really? Do you have a credible link to back that up? What kind of research are they doing?



I did not vaccinate my children, and they were both born at home, but I opted to get the metabolic screening because the tiny amount of pain caused by a heel prick is absolutely immeasurable compared to the pain that an undiagnosed metabolic condition could cause. My classmate's nephew has PKU that was untreated for a number of years, and he has severe damage as a result.


I don't have a link for the research that they do but I have heard that many many many times. Also, I think it is really cool that you are/were a surrogate! How awesome!

 

post #44 of 63
Quote:
Originally Posted by BaileyB View Post


I don't have a link for the research that they do but I have heard that many many many times. Also, I think it is really cool that you are/were a surrogate! How awesome!

 



Thanks BaileyB! I think it is pretty cool too. As far as the DNA thing, i would rather the gvt experiment on my kid's DNA than risk he or she suffering the life long cognitive disabilities that come with something like untreated PKU. JMO.

post #45 of 63

GAH! I had a whole response that got gobbled up by the internet monsters! So now I'll make it short.

 

Had a horrid experience with my first dd and that test, did not test dd2 and don't plan on testing future babe due in July/August. We supplement high dose iodine regularly which lack of is the main cause of metabolic disorders, which starts during pregnancy. We also use homeopathy for any health issues or illnesses we do encounter, though thus far and been minimal.

 

A Review on the Metabolic Disorders of Iodine Deficiency

http://scialert.net/abstract/?doi=pjbs.2011.412.424

post #46 of 63

With my two UCs I didn't do it and I don't plan to do it with this UC either. My first child was a hospital birth and of course had it.....my second child was a birthing center birth and I would have opted out of it had I the option....but it was required by state =(

 

post #47 of 63

my son has PKU and if i had not had the tests done he would already have irreprable brain damage at 4 months old. PKU is a genetic disorder that my son has because of the genes that he got from myself and my husband there is nothing that i could have done during pregnacy to prevent this (iodine would have done nothing) and until you have a child with PKU you would not even know you are a carrier they do not test for carriers just the disorder. because my son was tested and diagnosed with PKU his condition can be managed and he will be just fine. if we had not been tested it would already be to late and my sond quality of life would be greatly reduced as it is his condition can be managed through diet.. as for the heal test itself i have to do one weekly and my son usually sleeps through it so think about this before you refuse this very simple test

post #48 of 63
Quote:
Originally Posted by inertia View Post

Almost every state stores the DNA information from the PKU test in a database that is used for scientific research. I am against the state withholding private information such as this without parent approval. Plus its just creepy... Who knows what they might use it for.

This is true. I heard it many times here. It's not really a database as in your name is listed, etc but they use the info anonymously along with your gender, race, etc. for research.

 

Originally Posted by gossamerwindweb View Post

We didn't do any screening.

#1, our daughter was screened and didn't have any of them. From what I have read, if one baby doesn't, the likelihood of future children having them are EXTREMELY low

#2, the chances of a baby having any one of those diseases is incredibly low in the first place.

#3, the tests are done too early in general, and in my opinion, not worth our time. Hubby and I looked up all of the conditions that are tested for and the chances are SO low, that combined with our daughter testing negative on all of them, we decided not to do it.


Of course, most people would feel that a UC is 'taking unnecessary chances wirth baby's health' too...

Interesting info. My DD was negative.

 

For me it's not about avoiding a heel prick for the baby but just how necessary and accurate the test is. If we are just pricking her heel and it's not even gong to tell me anything accurately then there isn't a point in doing it. That being said I will probably bring my baby into the doctor at 2 or 3 days just for a basic newborn exam to ease my mind.

post #49 of 63

Lol at myself. I didn't even realize I had already read and responded to this post a while ago. I'm so blonde sometimes! lol.gif

post #50 of 63
Quote:
Originally Posted by gossamerwindweb View Post

Quote:
Originally Posted by zinemama View Post
I understand not wanting to cause an infant pain, but I'm curious how folks weigh that momentary hurt vs. refusing a test that will reveal whether the baby has a condition that, untreated, leads to profound mental retardation? I'm really interested in hearing what goes into a decision like this.

In my state (and I suspect in most) what's called the "PKU test" is actually a screening for 34 other conditions, so that those same few drops of blood can also show whether a baby has galactosemia, biotinidase deficiency or homocystinuria (to take just a few examples which also lead to profound mental retardation).

Are folks opting out of the screening for those, or is there something about the PKU in particular that you find disturbing?
We didn't do any screening.

#1, our daughter was screened and didn't have any of them. From what I have read, if one baby doesn't, the likelihood of future children having them are EXTREMELY low

#2, the chances of a baby having any one of those diseases is incredibly low in the first place.

#3, the tests are done too early in general, and in my opinion, not worth our time. Hubby and I looked up all of the conditions that are tested for and the chances are SO low, that combined with our daughter testing negative on all of them, we decided not to do it.


Of course, most people would feel that a UC is 'taking unnecessary chances wirth baby's health' too...

 #1 my older 2 children were also screened both negative  but my youngest son was positive for pku.. yes it is rare but having children without pku(or any genitic disorder) does not mean that future children are safe.  my husband and myself could have 20 more kids and none of they may have it but are son still does.

#2 yes the chances are very low 8 kids a year in the province where i live but my son was still one of those 8 this year.

#3 i do not know the standard of testing where you are from or where any one is from on this forum but i know that my son was tested at day 3 in the hospital and his protien levels were already very high and at dangerous leavels

 

 

 

everyone can do what they feel is best for there own children but i do think that if people are looking to this forum for advise on this issue they should hear boths sides of the issue

post #51 of 63

in ak you don't have to do the pku test but generally they do it at 24 hours and then again at one week. I just do the one after my milk has come in. minimal and very temporary pain for such a test and no long term side effects. 

post #52 of 63
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Edited by Heat - 12/16/13 at 9:49pm
post #53 of 63

Just dropping in here,

a) isnt the test mandatory until the baby is 12mths old, even if by then it would be too late to treat anything, and obvious that the baby was free of any of the conditions it diagnoses

b)isnt there a less traumatic and painful way to administer the test other than grabbing a newborns foot and pumping it for blood for at least 5 minutes? My first born had this done in the hospital and  i heard his screams from  the waiting room. My 2nd had this done at home, with him screaming and writhing on my lap. I heard that you could have the test done in the hand   which was somehow quicker, but none of the doctors do this for some reason.

 

I still dont understand why it mandatory until 12mths old.

 

 

 

 

.

post #54 of 63
Quote:
Originally Posted by contactmaya View Post

Just dropping in here,

a) isnt the test mandatory until the baby is 12mths old, even if by then it would be too late to treat anything, and obvious that the baby was free of any of the conditions it diagnoses

b)isnt there a less traumatic and painful way to administer the test other than grabbing a newborns foot and pumping it for blood for at least 5 minutes? My first born had this done in the hospital and  i heard his screams from  the waiting room. My 2nd had this done at home, with him screaming and writhing on my lap. I heard that you could have the test done in the hand   which was somehow quicker, but none of the doctors do this for some reason.

 

I still dont understand why it mandatory until 12mths old.

.

Anything can be refused. My first 3 were tested and my 4th wasn't. I had to sign a refusal sheet and that was it. No biggie, but I gave birth at home with him so my midwife didn't pressure me at all. You would have much more difficulty in the hospital I would think. 

 

Edited to add: In some states they do one 24 hours after birth and one again when the baby is two weeks old because there are so many "bad" tests at 24 hours. I would rather just do one test after my milk has come in and baby has been eating well than subject him to that twice for some arbitrary reason. We haven't decided what we will do with this little one. 

post #55 of 63
Quote:
Originally Posted by babycatcher12 View Post

Anything can be refused. My first 3 were tested and my 4th wasn't. I had to sign a refusal sheet and that was it. No biggie, but I gave birth at home with him so my midwife didn't pressure me at all. You would have much more difficulty in the hospital I would think. 

 

 Thanks for your answer.

 

My third was a homebirth with the same midwife  as my 2nd. We both agreed not to do the pku this time around, and in my case, procrastinate until the pediatric visit. 

 

By then, i had read that after a couple of months, there wasnt much point in doing the test.(since diseases would have already manifest, an/or it woudl be too late to treat them)  Later the doc called me to say, in fact the test was mandatory, and that i had to come in. Well, i came in only if a certain nurse was there (having read that an experienced nurse would make the process easier)  But said nurse was too busy and said i needed an appointment.

 

I decided to research more, to find a less painful alternative to this test.Apparently you can do it in the hand and it is more efficient, and therefore less painful.

 

Still, i dont understand why the law states that the test is mandatory up to 12mths,  if there is no medical reason for this (none that i can find)

 

Would the 'i refuse' route work in every state? Or would one of those cps trigger happy docs start to make trouble if you did that?

 

Anyway, i should read this entire thread.

post #56 of 63
Quote:
Originally Posted by paxye View Post

We do it... it is available as a completely non-evasive test here in Quebec (not the heel prick)

We just take a urine sample on a small piece of absorbent paper at 21 days old and send that in... because the baby has also had time to metabolize breastmilk it is also more accurate than the tests taken right after birth...

Wow!! That answers my question! (albiet, 2yrs ago)  Why dont they offer that?  Why didnt anyone tell me?  :-irked.gif

 

Better go back and read the rest of this thread....

post #57 of 63
Quote:
Originally Posted by inertia View Post

I am going to have a Newborn Screening Test Refusal form on-hand at my birth. Almost every state stores the DNA information from the PKU test in a database that is used for scientific research. I am against the state withholding private information such as this without parent approval. Plus its just creepy... Who knows what they might use it for.

There are nongovernmental and non-big pharma groups that do the genetic testing without invasive (heel stick) or illegal means (retaining DNA info). They usually work under homeopathic medicine.

 

Alright, i wish i had read this earlier.

post #58 of 63

Well we got it done at 4 days old. After fighting to get a pediatrician to actually take care of him we agreed to get him the PKU, blood culture and biliruben count. They took blood through his arm, like an adult, and it was literally one of the hardest things I've ever had to watch. Especially since we UC'd because we didn't want him to get the vitamin k shot, or be poked/prodded by anyone, so it was soul crushing agreeing to get him to take the PKU and other bloodworks, but because I had UP/UC'd and we had literally no testing done at all every pediatrician we encountered declined to take care of him without the PKU and hearing test, and he HAD to be seen by a pediatrician for documentation for his birth cert, which we needed for his fathers work to prove he had taken paternity leave. Otherwise we wouldn't have even brought him in to get anything done. You can absolutely refuse anything you want.

post #59 of 63
Quote:
Originally Posted by miilemons View Post
 They took blood through his arm, like an adult, and it was literally one of the hardest things I've ever had to watch.  

This. It is not just a pin prick. Its no better in the foot btw.

post #60 of 63

Hello - My son has congenital hypothyroidism, which is one of the tests included in the newborn screen.  In my fairly large state, there are a hundred cases a year.  I would like to address the questions of timing - for CH, every day that the baby goes untreated leads to a poorer outcome (IE lower IQ).  Studies show (and trust me, there are a lot of them), that IQ's are lower if the baby was treated in week 2 of life as opposed to week one.  In our case, our baby started treatment less than 72 hours after birth.  We had a traditional screen in the hospital - no previous risk factors. The state lab contacted a pediatric endocrinilogist, who contacted us.  20 minutes later we were at the pharmacy.  Because of the swift response, our baby should reach his full IQ potential, whatever that is.  I share this information because I would be hesitant to do a urine test at 3 weeks.  CH is the most common disorder found, and a small degree of permanent brain damage would have already occurred.  

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