PKU Test. I am saying no!! - Mothering Forums

View Poll Results: Did you say no to the PKU test with any of your children?
Yes 37 32.17%
No 78 67.83%
Voters: 115. You may not vote on this poll

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#1 of 65 Old 12-20-2004, 05:53 PM - Thread Starter
 
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Does anyone have a informed consent form against the PKU test? Or how I should word my own. I did not get it with my last child, but had to sign their form. I would prefer to have my own this time.

Also what a reasons you may have against this test. Mine in a nut shell are as follows: Tests are protocol and not always necessary. Many times are inconclusive. Pain and possible infection at needle prick. And they send the blood somewhere after they are done with it, and do not throw it out. That is a huge concern for me. There are others but just wanted to state a few.
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#2 of 65 Old 12-20-2004, 06:07 PM
 
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Do you have a back up plan to detect the conditions tested for by the PKU test?
Not that I know either, but what are the symptoms to watch for in the early weeks and months instead of having the blood test?

What form I'd make would depend on my state's laws. Some states mandate they offer the test, so the refusal form would say, "I was offered this test and I refuse it." If the law is that the test must be done, the refusal would say, "I decline this test based on my (religious, moral, personal) beliefs. Do not administer this test to my child."

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#3 of 65 Old 12-20-2004, 06:15 PM
 
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Just wanted to say also that I'd want to be sure to know any signs to watch for if you don't get it.
I did some research on it this time and was convinced it worth it to screen for the disorders that otherwise could be symptom free until it was too late...
I nursed my son for both picks and he never cried!
Just wanted to offer that it doesn't have to hurt them...
It's your decision of course to refuse and having something simple written down should be sufficient. I'd have both parents sign just to be safe.
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#4 of 65 Old 12-20-2004, 06:22 PM
 
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I'm going to learn about the signs for the next baby because the PKU test was traumatic for both of us! I don't want to put another baby through it.

Mama to DD (5) DD (3) and DS (2 months)
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#5 of 65 Old 12-20-2004, 07:04 PM
 
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I refuse the one immediately after birth (it isn't accurate for detecting the diseases anyway) but I do consent to one after the baby has started eating, I figure after a week the test is accurate. I have it done when we go into the midwife's office for the first weight check.

I am very selective about what I give my kids as far as tests and shots and meds but I feel the one little heel prick is worth the benefits of the test. That is just my opinion and you are absolutely free to refuse it. If you birth at the hospital and they give you a hard time just share with them that the one they do in the hospital isn't really accurate anyway and tell them (even if you are lying) that you plan to do one the next week when you take the baby to be weighed. That is what I would do if I were at the hospital and they gave me any crap.
I don't think it should be hard to refuse it but I don't know how I would word a refusal, I have never had to sign one.
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#6 of 65 Old 12-20-2004, 07:30 PM
 
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I have an Informed Consent form for parents to sign to refuse procedures such as newborn screening (and other procedures), and it states: "I have researched the newborn screening procedure and I have decided that I ( do / do not ) wish to have the screening performed on my baby. I understand that the NBS tests for five disorders which, if not treated very early in life, can cause severe mental retardation, illness, or death. The five disorders tested for include: phenylketonuria (PKU), galactosemia, congenital hypothyroidism, and congenital adrenal hyperplasia (CAH)." There is a line for the parents to sign/date, and a place for me to sign/date. The testing differs from state to state, so you can check with your state health dept. to find out what disorders newborns are screened for, and then do research on those particular disorders and what to watch for. Depending on where you are giving birth (home, hosp, birth center), you may need a more detailed informed consent. Your state's health dept. may also have their own form that you need to sign. Hope this helps!
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#7 of 65 Old 12-20-2004, 11:57 PM - Thread Starter
 
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My first child was given the PKU test in the hospital and it was awful. My husband about strangled the nurse. They got in a heated argument and the results of course were inconclusive, when we went for the stupid well-baby check ups we refused to do it again. They wanted me to sign a form like one similar to the one above, and I said no way. I will not admit that I am endangering my Childs life, when I don’t feel that I am. I do however appreciate you information and help Amanda. Don’t mean to disrespect you at all.

With my second child, I refused the test and had to sign some state form. I don’t even remember what it said. I don’t think they should even offer that stuff to you after a baby is born. Hormones a racing and morphine a kicking, due to the C-section. That is why I want to do it before, while my head is clear. (oh and just to let you know I am off pain meds, before I even leave the hospital. Rather have pain than my kids have those drugs in them)!

Anyway, the on call doctor for the newborns that week was actually a neo-natal surgeon. The doctor came to our room to check on our son, because we would not let the nurse take him. The doctor asked why I was refusing the PKU test and after I told him why, he said, “I WISH MORE PARENTS THOUGHT LIKE YOU” It felt great. He was very respectful and supportive.

Quote:
Originally Posted by Apricot
Some states mandate they offer the test, so the refusal form would say, "I was offered this test and I refuse it." If the law is that the test must be done, the refusal would say, "I decline this test based on my (religious, moral, personal) beliefs. Do not administer this test to my child."
This is exactly what I was looking for thanks. Just needed help with the words.

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#8 of 65 Old 12-21-2004, 01:15 AM
 
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I was waffling over whether to have it done when we took Marcos in to the doctor on Friday for a newborn exam. I asked the doctor if he recommended that we do it. He said "Uh..." (pause, laugh) "No. I think we do a lot of things to babies that aren't really necessary." Since that was kind of what I wanted to hear anyway, we left it at that.

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#9 of 65 Old 12-21-2004, 01:19 AM
 
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We did it w/all three of ours b/c a (former) close friend of mine has a ds w/a rare metabolic disorder that put him in a coma. Kind of wanted the small reassurance...but really, there are no guarantees. Her son's condition would have been caught with expanded newborn screening heel prick. That said, when I told my friend I didn't really *want* to do the heel prick, she told me I didn't love my children enough, that I was ignorant, selfish and she would pray that they would survive. So, for parents who have been through such a preventable trauma such as hers, there are a lot of intense emotions! We homebirth, don't vax, etc....so I'm pretty used to hearing other people's opinions on what I *should* be doing....everyone has to decide what feels right for them

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#10 of 65 Old 12-21-2004, 02:55 AM
 
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I offer all my clients an informed choice document on newborn screening. Each state has different newborn screening offered and I can tell you that in Oregon, WA, HI, MT and ID, they do NOT send away the blood after the screening. In fact, the blood from the heel poke is put on specially treated paper in these four circles. There is no blood to send away.

It is true that it is a SCREEN, meaning it's not diagnostic. The disorders tested for are VERY rare and it is also true that if caught early it could save a baby's life, mental abilities or physical health. It's up to the parents to decide what to do on this matter.

I wouldn't dismiss the screen just because of the heel poke. If you really feel that the odds of your baby having any of the tested for disorders are rare enough that you feel good bypassing the test, then I would.

For a state by state look at what is being tested for, look up your own state and "newborn screening" on Google. It should bring up everything - with the rates of incidence, treatment, etc.
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#11 of 65 Old 12-21-2004, 03:02 AM
 
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We did the test at the Ped.'s 2 days after our 2nd was born. At the time, I was not aware that the PKU covered thyroid scan. I thought it was a separate test. So one month later, I asked our Ped to do labwork on her blood to check the levels.
Come to find out her thyroid was not working right. She was diagnosed with hypothyroidism.
Here's the thing. I have Graves disease, so during the pregnancy, I was on a major dose of synthroid (.350mcg)
At the PKU, right after birth, or even a week later, dd still would have residual synthroid in her bloodstream from the placenta, therefore masking any real problems. If I hadn't asked for the additional labwork, God only knows when we would have discovered her thryoid issue. If we would at all. And if we saw any developmental problems, we may not have linked it to the thyroid.
Thyroid is a big deal in my family so we had my oldest tested also- thankfully no problems there, but our youngest will probably need the meds for life.
Apparently when the thyroid is not functioning properly, severe mental problems can occur in children under 2 yrs old.
If I were to reccommend the test to those who wish to do it- have it done, a few weeks after the birth, when the baby is truly working on their own blood supply and not leftover blood from the placenta.

PP said it right- immediate testing "probably" proves nothing. They might as well perform the test on the mom!
Same blood right?

Mama to 5 babies. UCer, too!
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#12 of 65 Old 12-21-2004, 03:21 AM
 
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It is a misnomer that your baby has to be eating milk for the test to be accurate.

Really, it all depends upon what your state tests for as far as when the most accurate times to test is.

In our state, three days is the best time to test if we're going to test only one time. If we do test only one time at three days, I let people know that there is a chance of missing congenital hypothyroidism with that one test.

It all depends, but it's just a myth that the baby has to be eating before the tests can come back accurately. It's about the metabolic changes as it shifts to processing its own digestion (which occurs before the milk is in) .
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#13 of 65 Old 12-21-2004, 03:42 AM
 
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I took my oldest dd in to a hospital have hers done and it was hell. I nursed her while it was being done.

The next 2 my mw did, one baby slept throught hers even though it took 3 pricks to get enough blood and the last baby was wide awake and she never cried or fussed.

I would be careful about nursing while having the prick done as the baby CAN relate nursing to pain and not want to nurse for awhile after that. My oldest was that way and it was awful

my mw wont do the prick till about a week + of age.

I hate seeing my babies pricked but for their health I feel its worth it.
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#14 of 65 Old 12-21-2004, 03:44 AM
 
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Quote:
Originally Posted by Healthy Skeptic
They wanted me to sign a form like one similar to the one above, and I said no way. I will not admit that I am endangering my Childs life, when I don’t feel that I am.
The purpose of an informed consent is to make sure that parents are aware of their choices and of the consequences of their decisions. In the state of Texas, I am required by law to administer the newborn screening exam, although parents do have the right to refuse the test by signing an informed consent. I personally do not believe that *every* baby needs the NSE, however, because of the laws in my state, I have to have the parents sign this form to CMA. My informed consent just states the known consequences (if left untreated) of the disorders that newborns are screened for, and these include severe mental retardation, illness, and death.
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#15 of 65 Old 12-21-2004, 03:52 AM
 
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I said no and held firm------ and then I finally caved and got dd the pku done at 4 weeks old because they just would not leave me alone and kept calling and getting the health nurse to show up at my home.
I wanted them to just go away and leave my baby and my new family alone. So we went in and did it and they let us be after that.

Dd looked quite pissed off at the initial heel prick, but did not cry.
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#16 of 65 Old 12-21-2004, 04:24 AM
 
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I considered declining in the past because we're not at risk for the diseases tested for. Then I learned a friend of mine who declined the test actually had a baby who does have PKU and fortunately it was picked up when the baby nearly died do to unrelated causes. I've decided to go with the test JIC, one time.
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#17 of 65 Old 12-21-2004, 04:17 PM
 
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I am sure I'll get flamed here, but I really think declining PKU is a poor idea. I think the focus should be on figuring out how to give newborns or month olds or whatever a heal prick without so much trauma. I was under the impression and would welcome anyone with more information about the Vitamin K shot. That often newborns are given Vitamin K and then nursing staff try to draw blood from babies right afterward.

Individauls with untreated PKU can and often are severely retarded.

Individuals with that follow the PKU diet closely usually are completely normal.

Individuals with poor complaince vary a lot. Often they have attentional problems, but pretty normal intelligence.

Just because no one in your memory in either side has PKU does not mean that your child couldn't. In fact most likely there would be no one.
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#18 of 65 Old 12-21-2004, 04:38 PM - Thread Starter
 
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Quote:
Originally Posted by pamamidwife
I can tell you that in Oregon, WA, HI, MT and ID, they do NOT send away the blood after the screening. In fact, the blood from the heel poke is put on specially treated paper in these four circles. There is no blood to send away.
Actually this is not true. Current national standards in the United States allow the use of sample cards for research without requiring an individual's consent, as long as identifying data are removed (and, um, I don't trust them to follow that, when I really have now way of knowing). Time of sample storage ranges from 21 years to one week in the United States (I have also heard of nurses telling mothers it was kept for 50 years for legal reasons). In Denmark, cards are stored indefinitely, while in France they are destroyed soon after testing.

Policies also vary or are unclear concerning parent education about the use of residual blood samples, an individual's right to refuse usage of their sample, and ownership of the card. No U.S. state requires individuals to give permission for the use of their genetic information in studies. Australia and New Zealand have a policy of "informed refusal" for sample storage (i.e. after being informed about possible uses of the sample, individuals can refuse to have it stored), and using the cards for purposes outside the screening program requires informed consent. Austria, Finland, Iceland, Sweden and Switzerland have enacted legislative policy to protect information gained from genetic testing. For more info on this and our laws go here http://gslc.genetics.utah.edu/units/newborn/laws.cfm and here http://gslc.genetics.utah.edu/units/newborn/ngt.pdf

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#19 of 65 Old 12-21-2004, 05:07 PM - Thread Starter
 
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Quote:
Originally Posted by TXmidwife
The purpose of an informed consent is to make sure that parents are aware of their choices and of the consequences of their decisions.
I looked into this and found out that if you do not include both the risks and the alternative choices than it is not a true informed consent (so thanks for your input). I just don’t want to sign something that says I am endangering my child’s life. That could bite me in the butt someday. I was just hoping to word it in a way that did not make me sound like a crazy parent who does not love and care for her children. When in fact, I love them so much, that I will not allow doctors or government agencies do what ever they want for the sake of protocol and money in their pockets.

I can’t tell you how much you all have helped me so far. I feel blessed.

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#20 of 65 Old 12-21-2004, 05:18 PM
 
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When our MW does the heel sticks for PKU, she uses the very point of a scalpel. One quick jab, and the blood is right there, just enough to fill in the little circles.
My DD showed no sign that she noticed at all. I held her for it, and was all set to nurse her right afterward, but she just went right back to drifting off to sleep.

What do others do? I've heard of nurses using needles, which hurt and then aren't very effective in getting the blood to actually surface, so they have to milk the babies' heels to get enough. Sounds awful!! :

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#21 of 65 Old 12-21-2004, 05:21 PM - Thread Starter
 
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Quote:
Originally Posted by mnnice
I am sure I'll get flamed here, but I really think declining PKU is a poor idea.
Just because no one in your memory in either side has PKU does not mean that your child couldn't. In fact most likely there would be no one.
Don't worry I wont flame you. I have heard worse about my choices from less educated people. I assume most of you are very educated. That is why I came here for help. You all have been very nice with your thoughts and comments.

I do know from a friend who was also deciding on what to do, that the PKU itself has to be on both sides of the family for the child to get it. This is what her friend was told by her doctor. Her child had PKU and she was grateful for the test.
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#22 of 65 Old 12-21-2004, 05:29 PM - Thread Starter
 
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Quote:
Originally Posted by ramlah
What do others do? I've heard of nurses using needles, which hurt and then aren't very effective in getting the blood to actually surface, so they have to milk the babies' heels to get enough. Sounds awful!! :
This is what happened with my first child. My hubby said she was screaming and crying so loud. It broke his heart. And the lady kept renching on her foot. He stopped her and yelled at her. He can't imagine what they do when parents are not there.

Same hospital 4 years later, My friend got it done and said the lady was so nice and gentle that her baby did not even cry.

Still, unless they gave me that card to destroy myself I will not do it.
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#23 of 65 Old 12-21-2004, 05:48 PM
 
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There are devices called "tenderfoots" that cut a measured slice in the heel. Warming the foot in a warm cloth or bowl of warm water helps, too. The test is usually 3-4 paper circles that need to be filled in with blood, so the person doing the test sometimes needs to "milk" the foot to get enough blood to ensure the lab has enough to do the tests. The milking shouldn't be that uncomfortable.
There have been accounts of the heel being cut too deeply, needing stitches or causing nerve damage, but that has declined considerably since most hospitals stopped using scapels and started using lancets.
Each state mandates differents tests. While the test is often called the PKU test, it usually has more things tested, as pamamidwife mentioned. There's been some lobbying to include more tests, as the cost goes down when everyone does them.
I will soon be talking to someone who works in the state office. I will definitely ask about what our state does with the tests and about whether a test could be returned to the mother afterwards. My curiosity has been aroused on this question!
I started a new thread to talk about privacy issues with blood testing. Maybe you could come help me learn? http://www.mothering.com/discussions...67#post2416967

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#24 of 65 Old 12-21-2004, 05:55 PM
 
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hm, well, I can certainly see both sides of the issue. I have gotten the newborn screening for all of my children.

My boys were both in the NICU for prematurity & they did the screen w/ blood they already had drawn through a central line for other labs.

However, w/ my hb (megan) I was seriously considering not having the test done...I'm glad I did. Megan has PKU. We have ZERO family history of PKU. It can be passed on (autosomal recessive, as someone else stated) or it can actually be a spontaneous mutation. For me, personally, when weighing the pros & cons, I don't think I could risk mental retardation just to avoid a poke.

And we have been told by the health dept, our metabolic geneticist, etc. that in order for the initial test to be considered "valid" it must not be performed before 48 hours of feeds (breastmilk, formula, etc.) That's also why it's repeated at 2 weeks old...because they are aware that some babies are not eating well at the 48 hour mark.

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#25 of 65 Old 12-21-2004, 06:03 PM
 
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, Apricot.

I used to be a ped. assistant and I did PKUs. I had mama or papa hold a very warm cloth on the heel for several minutes. I used "tenderfoots", which I held against the heel and, clicked a button. I very rarely had to "milk" a foot using this technique. If it was very difficult, I would redo this technique on the other heel and it would be superfast. I'd always request that mamas nurse during the procedure.
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#26 of 65 Old 12-21-2004, 06:20 PM
 
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Before my 2nd baby had the PKU heel stick I rubbed his foot while nursing. He was four days old. When our family doc's nurse stuck him he didn't even flinch. He didn't even change his sucking pattern while she quickly dottted the blood onto the little circles.

My first baby screamed his head off when the nurse grabbed his foot, stuck him, and milked the blood out - without even telling me what she was doing, nevermind asking permission! She only told me what she was doing when I insisted that she respond, and then she mentioned casually that the test wasn't valid any way because he was only 24 hours old. I wanted to kill her!

So, my advice for those of you who decide to have this test: 1.Nurse during it!! 2. Have someone you trust do the heel stick.

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#27 of 65 Old 12-21-2004, 08:14 PM
 
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As far as nursing during...

there have been many debates about that part here, and I come out on the side of not doing it. It's important to me to be ready to nurse immediately afterward, but not to let anything like that happen while DD is nursing. I want to keep that time sacred.

edited to add:
mimim:
That is horrible!!!! How infuriating! How does a person get to be like that???
How can anyone work with moms and babies and show no interest in being kind, if nothing else??

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#28 of 65 Old 12-21-2004, 08:20 PM
 
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Quote:
Originally Posted by ramlah
As far as nursing during...

It's important to me to be ready to nurse immediately afterward, but not to let anything like that happen while DD is nursing. I want to keep that time sacred.
I want to stress what she said again.

I made the mistake of nursing my first DURING the prick like I said in my first post.
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#29 of 65 Old 12-21-2004, 09:02 PM
 
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I just wanted to add that congenital hypothyroidism is not all that rare: 1/4000. It is totally treatable.

If untreated, it is as serious as phenylkenoturia, which is much rarer.

I don't think that it is right or wrong to decline the testing. As long as you will take the responsibility for making that choice, even if the outcome is that the babe is positive, but it wasn't caught until damage had been done. Chances are, a person's babe would be normal and therefore tested unnecessarily. Chances are funny things though...

Carolynn
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#30 of 65 Old 12-21-2004, 09:30 PM
 
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However, w/ my hb (megan) I was seriously considering not having the test done...I'm glad I did. Megan has PKU. We have ZERO family history of PKU. It can be passed on (autosomal recessive, as someone else stated) or it can actually be a spontaneous mutation. For me, personally, when weighing the pros & cons, I don't think I could risk mental retardation just to avoid a poke.
I agree. I know a great deal of my family history amd have always been interested in the genetics of it as I know a good deal of my distant family. Since I am familiar with so much of my distant family it becomes very interesting when you can pick out a recessive trait (like no ear lobes..I don't have lobes!) in distant (like 5th cousins) relatives. So I have a very different perspective of genetics because I actually get to see how it works.

Autosomal means that someone must have two recessive genes in order for them to develop the disease. It is possible that both parents can have the recessive gene and not have the disease themselves. They would simply be carriers. Without genetic testing it would be impossible to determine whether someone was a carrier for the disease.

Genetics of PKU
http://www.ess.sunysb.edu/tracy/genetics.html

I did allow the PKU test, it was very quick and dd didn't cry. I nursed her immediately afterwards. I refused some other things that I found absurd like the Hep B vax but PKU I was ok with.

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