Guest guest Posted April 11, 2002 Report Share Posted April 11, 2002 I agree abt that test, because there nothing injected into the baby... just find food allergies not harmful to do blood test.. some rather do it after few days nursing. > hiya, can anyone please give me some idea on whether > or not to agree on a pku test, please. > thanx > claudia > > > > > > > > > ===== > http://www.angelfire.com/realm2/wiseone/UKvaxinfo.htm > deutsprachige impfkritikliste: impfkritik_deutsch/ > http://www.angelfire.com/realm2/wiseone/index.htm > > > " Be the change that you want to see in the world. " > > __________________________________________________ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 11, 2002 Report Share Posted April 11, 2002 In a message dated 4/11/02 11:46:05 PM GTB Daylight Time, claudiaayaz@... writes: << or not to agree on a pku test, please. >> I say one is ok once the baby has some breastmilk in him/her(say a week or 2 after birth).Just be sure to get that heel ready so they won't be milking the crap out of it.The MA has info:http://www.gentlebirth.org/archives/#Postpartum Can't say whether I will do it or not myself next month. I know I won't do vitK and hepB vax.Probably not the eye oinment either even though dd had no problems with it. sara Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 11, 2002 Report Share Posted April 11, 2002 make sure your baby has enough breast milk in his system before they do the test. someone correct me if i'm wrong, but i think the test is mandated in every state. anyway, our first ped. in denver wanted to do ANOTHER test AFTER ryan had already had a test done in the hospital (which came back normal). this stupid ped. tried to tell me ryan needed another " heel prick " for pku at two weeks of age. i found out what the results of his first pku test were myself, as this stupid idiot tried telling me he didn't know what the tests results were. (he was obviously lying, because if the hospital's test comes back with any problems, they HAVE to tell you within 24 hours). so he KNEW that ryan's lab results were fine, or he'd have heard from the lab. so...we opted NOT for a repeat pku test. this ped. gave me all sorts of grief over it, but i stood my ground. oh yeah, there was the little matter of this particular ped. having his own " lab " in his office, they did all of their lab work there. not to mention, the charge for this totally unnecessary second pku test? $92.00....needless to say, we switched peds. kim pku test? > hiya, can anyone please give me some idea on whether > or not to agree on a pku test, please. > thanx > claudia > > > > > > > > > ===== > http://www.angelfire.com/realm2/wiseone/UKvaxinfo.htm > deutsprachige impfkritikliste: impfkritik_deutsch/ > http://www.angelfire.com/realm2/wiseone/index.htm > > > " Be the change that you want to see in the world. " > > __________________________________________________ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 11, 2002 Report Share Posted April 11, 2002 This test was done on Robyn without my consent which I was planning to withhold. IMO, it is invasive and unnecessary unless there is a history of metabolic problems in the family. Sue > pku test? > > > hiya, can anyone please give me some idea on whether > or not to agree on a pku test, please. > thanx > claudia > > > > > > > > > ===== > http://www.angelfire.com/realm2/wiseone/UKvaxinfo.htm > deutsprachige impfkritikliste: > impfkritik_deutsch/ > http://www.angelfire.com/realm2/wiseone/index.htm > > > " Be the change that you want to see in the world. " > > __________________________________________________ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 11, 2002 Report Share Posted April 11, 2002 The tests are not valid if done before 48 hours of life. That's why there is a repeat done after baby has gone home, since most are discharged before 48 hours. I've worked in hospitals and for home health where we did PKU tests. Don't ask me why the tests are done on all the babies if they're not valid before 48 hours. I guess it all goes back to the almighty dollar! Stinks, doesn't it... Kay make sure your baby has enough breast milk in his system before they do the test. someone correct me if i'm wrong, but i think the test is mandated in every state. anyway, our first ped. in denver wanted to do ANOTHER test AFTER ryan had already had a test done in the hospital (which came back normal). kim Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 11, 2002 Report Share Posted April 11, 2002 Kay, You're absolutely right, but in my case, I WAS in the hospital for 48 hours and 's PKU test was done right before I was discharged. Also, I was " dry, " (sob)...I had no breastmilk (my grandmother was the same way)...so he had formula. So...he was in for two days, had plenty of formula in his system, had a normal test and they STILL tried to get me to do another pku test on him. I didn't want to do that for the obvious reasons, but also they were doing another heel prick for jaundice and I just couldn't see putting the kid through that. Kim Re: pku test? > The tests are not valid if done before 48 hours of life. That's why there is a repeat done after baby has gone home, since most are discharged before 48 hours. I've worked in hospitals and for home health where we did PKU tests. Don't ask me why the tests are done on all the babies if they're not valid before 48 hours. I guess it all goes back to the almighty dollar! Stinks, doesn't it... > > Kay > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 11, 2002 Report Share Posted April 11, 2002 I told this story not long ago but for Nora I'll tell it again!!! You can have a large range metabolic screening done for about 25.00 . It has no side effects. I met a woman a few months ago who had just lost her daughter (4 months old ) to a FOD. There was no warning or indication that anything was wrong with Nora. It was there second child and she nursed exclusively, cloth diapered and family bedded. They thought Nora was a sids death until the autopsy. She suddenly seemed odd, they rushed her to the hospital, she lapsed into a coma and died in a matter of hours. If my friend could undo one thing in her life it would be not having Nora tested. She opted out of the testing and vaccinations. I f they had discovered Nora had Fods they could have modified her feedings and she would be almost a year old now. >This test was done on Robyn without my consent which I was planning to >withhold. IMO, it is invasive and unnecessary unless there is a history of >metabolic problems in the family. > >Sue > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 12, 2002 Report Share Posted April 12, 2002 thanx, kim and sue! :-) claudia --- Sue <angelmouse55@...> wrote: > This test was done on Robyn without my consent which > I was planning to > withhold. IMO, it is invasive and unnecessary > unless there is a history of > metabolic problems in the family. > > Sue > > > pku test? > > > > > > hiya, can anyone please give me some idea on > whether > > or not to agree on a pku test, please. > > thanx > > claudia > > > > > > > > > > > > > > > > > > ===== > > > http://www.angelfire.com/realm2/wiseone/UKvaxinfo.htm > > deutsprachige impfkritikliste: > > impfkritik_deutsch/ > > http://www.angelfire.com/realm2/wiseone/index.htm > > > > > > " Be the change that you want to see in the world. " > > > > __________________________________________________ > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 12, 2002 Report Share Posted April 12, 2002 well why would you do the eye ointment? I'm assuming blood tests have indicated no std's and you are in a monogamous relationship with SO? Laurie>Oh I know I won't do vitK and hepB vax.Probably not the eye oinment either even though dd had no problems with it. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 12, 2002 Report Share Posted April 12, 2002 , this is one I would absolutely do. It's insidious, because a child could be relatively all right for a while, and then it's to late. It can leave them mentally retarded. There is evidence that nationality plays a part in this. The United States Newborn Screening is different in every state. They accept different values in every state. For instance CA value is 1.5, and they use a different form of the test. Some states values are 4. This shouldn't surprise any of us on this list, but insurance companies have lobbied to get values raised, and they succeeded. If PKU is diagnosed, it requires a special diet, which is very costly, and the insurance companies will have to pay, because it's considered life threatening. Ireland has the highest incidence of PKU, and their value is a 2, with this value a child is considered to have PKU. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 12, 2002 Report Share Posted April 12, 2002 In a message dated 4/12/02 1:48:51 PM GTB Daylight Time, suziesparkle@... writes: << PKU tested you mean? What a tragic story.......Nora is a beautiful name. >> I saw her web page ,was a cutie baby. Sometimes we make choices that have tragic results.Part of parenting. Sara Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 12, 2002 Report Share Posted April 12, 2002 >>The tests are not valid if done before 48 hours of life. That's why there is a repeat done after baby has gone home, since most are discharged before 48 hours. << Kay? Why arent they valid? Thanks for enlightening me further on this subject......:-) Suzie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 12, 2002 Report Share Posted April 12, 2002 >>I met a woman a few months ago who had just lost her daughter (4 months old ) to a FOD. << FOD?? >>If my friend could undo one thing in her life it would be not having Nora tested. << PKU tested you mean? What a tragic story.......Nora is a beautiful name. Suzie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 12, 2002 Report Share Posted April 12, 2002 For some reason, the test is more accurate at detecting problems if done between 48 hours and two weeks. If I remember correctly, it has something to do with how the baby is starting to metabolize his or her food by then. There is an increased chance that cases are missed if done before 48 hours. Kay >>The tests are not valid if done before 48 hours of life. That's why there is a repeat done after baby has gone home, since most are discharged before 48 hours. << Kay? Why arent they valid? Thanks for enlightening me further on this subject......:-) Suzie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 12, 2002 Report Share Posted April 12, 2002 Hi Kim, That is frustrating! The only thing I can think of is if they didn't get enough blood the first time. Those tests are very tempermental, and from doing them so many times, I know it's not always easy to get the blood. If it's not collected in a certain way, then they are rejected. But you said you checked and found out his first test was ok. So, that is a strange situation. Maybe they were just blood thirsty! : ) Kay Kay, I WAS in the hospital for 48 hours and 's PKU test was done right before I was discharged. had a normal test and they STILL tried to get me to do another pku test on him. I didn't want to do that for the obvious reasons, but also they were doing another heel prick for jaundice and I just couldn't see putting the kid through that. Kim Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 12, 2002 Report Share Posted April 12, 2002 > Fatty acid oxidation disorder. She could not metabolize stored fat. She only used immediate carbohydrates. There is a relatively simple diet for these kids and supplements to be sure they do not starve to death. There are many metabolic disorders, pku, fod's ect. > If they are identified during the first week, the parents know what to look for and how to treat the child. Nora's had a had a cold and wasn't nursing as well and then her Mom went to an all day conference and left Nora with her sister and bottles of Breast milk. Again, Nora did not eat as she normally did and lapsed into a coma and died shortly after....without her Mom with her (her Dad was there). It happened so quickly. > > >FOD?? > >>>If my friend could undo one thing in her life it would be not having Nora tested. << >>> > >PKU tested you mean? What a tragic story.......Nora is a beautiful name. > >Suzie > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 12, 2002 Report Share Posted April 12, 2002 Hi Kay, They were absolutely money hungry. I called the lab myself and the hospital to get the results on 's PKU test. It not only came out fine, it was as good as you can get. THEN, when had his two week checkup, I didn't tell this pediatrician that I'd done this. I also knew that the reason he'd not heard back from the lab or hospital was BECAUSE 's test was just fine (perfect, actually). The only reason (and I'm sure you know this) 's ped. would have heard back from anyone regarding the PKU test was if there was an indication something was wrong. So, when the nurse came into the room to do the heel prick, I promptly sent her out, told her to call the lab/hospital where the test was evaluated and she did. She came back a few minutes later and said, " The test results were good. " I asked her to repeat it, and she did. I then shooed her out of the room and promptly dressed my son to leave. During the visit, they just acted as though another PKU test was a normal procedure during the visit. What they they did not also know was that, being the paralegal that I am, I called several pediatricians in several states, i.e., Ohio, California and Colorado, and inquired about their procedures in PKU testing. I was actually asked by Heidi Fleiss' Dad (a pediatrician and a darn good one) just WHY they were doing any bloodwork at all on a perfectly healthy two week old? He was incredulous. I had another ped. mention very " lightly " that if he had HIS own lab in his office, his income would be considerably higher. Our ped.'s charge for another, in our case, absolustely unjustified and unneeded, PKU.....$92.00! Don't misunderstand me, I'm all for PKU testing. It's just that I did my research and found out that, in our son's case, there was absolutely no justification whatsoever to do another procedure. This was a money grubbing, disgustingingly patronizing, insulting physician who didn't want to work as a team with the parents at all. He wanted to call all the " shots " and you were to do as you were told. I hated him the moment he walked into my hospital room; he walked right on in, never announced himself by a knock on the door, and as I made my way out of my restroom (I had a private room) he was just sitting there. I could have found myself meeting this jerk undressed, or semi-undressed and well, that behavior alone was a red flag for me about this man. We changed peds. very quickly after this PKU thing and I've never once regretted it. We learned to interview thoroughly each and every physician our family has to ensure we have a working relationship based on mutual respect and courtesy. It was a big eye opener for me and it also opened my eyes to the financial aspects in pediatrics, too. Kim Re: pku test? > Hi Kim, > > That is frustrating! The only thing I can think of is if they didn't get enough blood the first time. Those tests are very tempermental, and from doing them so many times, I know it's not always easy to get the blood. If it's not collected in a certain way, then they are rejected. But you said you checked and found out his first test was ok. So, that is a strange situation. Maybe they were just blood thirsty! : ) > > Kay > > Kay, > > I WAS in the hospital for 48 hours and 's PKU test was done right before I was discharged. had a normal test and they STILL tried to get me to do another pku > test on him. I didn't want to do that for the obvious reasons, but also > they were doing another heel prick for jaundice and I just couldn't see > putting the kid through that. > > Kim > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 12, 2002 Report Share Posted April 12, 2002 No, Suzie, that's not quite correct. It depends on the amino acid levels in the baby's system. In our son's case, right before 48 hours, he was tested; he had more than enough formula in his system for adequate testing. What you might want to do as a new mom is state, if they allow this, that you do not want your child tested before leaving the hospital, but make sure to have the child tested within a two week period. I know some states do allow this. I'm not sure what Colorado would have done, although my hunch is that they test every newborn before leaving the hospital. This timeframe in doing the pku test is somewhat contentious among medical professionals. I just wish they'd get their acts together on this one. In our case, I hadn't interviewed our first pediatrician (big mistake) and to boot, he was as money grubbing as you can possibly get. I'd also spoken to a nurse at the public health dept. in Denver during my research on pku testing. That little heel prick they say doesn't hurt much? She said it hurts like " hell. " Given the fact they also had to test our son's bilirubin levels because of jaundice, I just wasn't about to put him through that second pku test when I knew for a fact his first one had been just fine. Kim Re: pku test? > >>The tests are not valid if done before 48 hours of life. That's why there is a repeat done after baby has gone home, since most are discharged before 48 hours. << > > Kay? > Why arent they valid? Thanks for enlightening me further on this subject......:-) > > Suzie > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 12, 2002 Report Share Posted April 12, 2002 oh thanks for this !! Very interesting.....maybe I will allow the pku with next baby.....plenty of time to decide, not ttc yet! LOL! Suzie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 12, 2002 Report Share Posted April 12, 2002 >>something to do with how the baby is starting to metabolize his or her food by then. << oh ok....thankyou. :-) Suzie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 12, 2002 Report Share Posted April 12, 2002 wow poor family.....:-( Thankyou for info on FOD, never heard of it or other metabolic disorders/diseases........learn something new every day huh? Maybe the pku test is ok to do then, after 48 hours.......... Suzie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 12, 2002 Report Share Posted April 12, 2002 Yes! Suzie, you need absolutely to do the PKU test. But make sure you do it in a timeframe that will ensure the best test results possible. Ask your hospital or healthcare provider WHEN the proper time for testing should be. I wouldn't allow them to do a repeat procedure...that's unnecessary. If they tell you two weeks is a good timeframe, then do that. But it's stupid to put your babe through that test once at the hospital and then yet again at two weeks. Once is enough and see if you can waive the first one before you leave the hospital. It really is a painful procedure....I've spoken with many moms who nursed their little ones during this procedure. It really does help keep the baby calm....good luck! Kim Re: pku test? > wow poor family.....:-( > Thankyou for info on FOD, never heard of it or other metabolic disorders/diseases........learn something new every day huh? Maybe the pku test is ok to do then, after 48 hours.......... > > Suzie > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 12, 2002 Report Share Posted April 12, 2002 Sorry guys, I realize reading my back posts that I've repeated myself one too many times about the issues I had with pku testing. But I think you all can see that hit a nerve for me when I remember that idiot pediatrician....ugh....sorry for the rambling! Kim Re: pku test? > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 12, 2002 Report Share Posted April 12, 2002 This is the one thing I finally decided to do, since nothing is injected into the body and I could not have forgiven myself if something was there and not detected. I nursed my son while the doctor drew the blood and he cried for just about 2 seconds before going back to nursing, so it was really no big deal. Love, Mara __________________________________________________________________ Your favorite stores, helpful shopping tools and great gift ideas. Experience the convenience of buying online with Shop@Netscape! http://shopnow.netscape.com/ Get your own FREE, personal Netscape Mail account today at http://webmail.netscape.com/ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 12, 2002 Report Share Posted April 12, 2002 aahhhh ok thankyou Kim. I am in the UK by the way.....:-) Suzie dd Ruby (3 in June) South Wales, UK Quote Link to comment Share on other sites More sharing options...
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