kibblesandbits
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Post by kibblesandbits on Aug 21, 2016 13:17:29 GMT
Honestly, it doesn't sound like you know too much about the situation. You're making many assumptions. And, your friend is either giving you vague information or you're not hearing her well. PKU requires a very strict diet, and your "friend" should have been following it very closely with her child for the last 12 years. If she has not been working hard to provide the appropriate protein replacement, and has been giving the child aspartame drinks, that would, in some views, be tantamount to abuse and neglect and she should be reported to protective authorities.
As an aside, your boyfriend sounds like a tool. You asked him a specific question and he just said "wait until you take the class yourself"? Dude has some attitude with you.
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Post by elaine on Aug 21, 2016 14:53:17 GMT
All infants in the USA are tested at birth for PKU. It isn't developed later in life.
It is genetic, you cannot develop it from eating anything. Your symptoms can show up depending on diet, but you already had the disease.
Food does not cause PKU, genes do.
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Deleted
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Aug 18, 2025 21:42:27 GMT
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Post by Deleted on Aug 21, 2016 16:46:13 GMT
And if I remember correctly, BOTH parents have to be carriers of the gene.
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AnotherPea
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Post by AnotherPea on Aug 21, 2016 16:48:47 GMT
If he truly has PKU, then he has the genes. That's just how it works. IF he has PKU and regularly drinks aspartame sweetened drinks, then yes, he will develop some brain damage. How old is the boy? PKU is normally detected at birth, or close after. The normally take a blood test (pin-prick on the heel) a few days after birth - I remember my boys having it done and they are in their late 20s. He is 12. was he born in a modern hospital? Not a home birth or adoption from a foreign country? |
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Post by pierkiss on Aug 21, 2016 17:52:27 GMT
Was he recently adopted by your friend and she is just now finding out? I've been baffled by this and I have been thinking about it all day. It is very odd that this child is 12 years old and she is just now finding out that he has PKU. Something doesn't quite make sense as all babies born in the hospitals here are tested for this. Even babies birthed at home would be tested by their pediatricians at their first appointment. And if he actually has PKU, and has been eating (and drinking) things with phenylalanine in them for all these years, I have to imagine the neurological impairment would be severe and obvious by now.
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iowgirl
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Post by iowgirl on Aug 21, 2016 18:12:28 GMT
That sounds like aspartame? which she claims is how her son got PKU because she used to give him drinks that had aspartame for a sweetener. ALL babies born in the US are tested for it. My kids' friends have it. Five kids in one family all have it. You would never know it, unless they told you. All healthy and very intelligent kids. They all drink the special formula and will for life, unless there are other breakthroughs and follow a special diet. I always made sure to pack PKU friendly snacks for birthday treats, etc. at school. When they came over, they were great about letting me know what they could and couldn't eat and never made a fuss about anything. Super kids. |
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Post by mymindseyedpea on Aug 22, 2016 6:16:57 GMT
Was he recently adopted by your friend and she is just now finding out? I've been baffled by this and I have been thinking about it all day. It is very odd that this child is 12 years old and she is just now finding out that he has PKU. Something doesn't quite make sense as all babies born in the hospitals here are tested for this. Even babies birthed at home would be tested by their pediatricians at their first appointment. And if he actually has PKU, and has been eating (and drinking) things with phenylalanine in them for all these years, I have to imagine the neurological impairment would be severe and obvious by now. I should clarify that she is just a facebook friend, so I don't know all the details. And I'm not the kind if person who asks them either. All I know is that she says she wasn't aware that when she gave him the sweetener drinks that it had an artificial sweetener in it. Whether that means she just didn't know what aspartame was at the time or didn't think it was harmful, I don't know. The drinks were Crystal Light. Are there warning labels on those boxes like the diet sodas have? |
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kibblesandbits
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At the corner of Awesome and Bombdiggity
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Post by kibblesandbits on Aug 22, 2016 18:47:09 GMT
This is just a Facebook friend? Not someone you know IRL? I was right then, you really don't know much about the situation. Other than finding out about PKU (which, by the way, is easily Googled), what is your interest in this?
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kibblesandbits
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Post by kibblesandbits on Aug 22, 2016 18:52:01 GMT
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Post by elaine on Aug 22, 2016 18:56:35 GMT
Was he recently adopted by your friend and she is just now finding out? I've been baffled by this and I have been thinking about it all day. It is very odd that this child is 12 years old and she is just now finding out that he has PKU. Something doesn't quite make sense as all babies born in the hospitals here are tested for this. Even babies birthed at home would be tested by their pediatricians at their first appointment. And if he actually has PKU, and has been eating (and drinking) things with phenylalanine in them for all these years, I have to imagine the neurological impairment would be severe and obvious by now. I should clarify that she is just a facebook friend, so I don't know all the details. And I'm not the kind if person who asks them either. All I know is that she says she wasn't aware that when she gave him the sweetener drinks that it had an artificial sweetener in it. Whether that means she just didn't know what aspartame was at the time or didn't think it was harmful, I don't know. The drinks were Crystal Light. Are there warning labels on those boxes like the diet sodas have? Yes. Anything with phenylalanine has the label. If I were you, I'd go ahead and let this one go since you don't really know this person. If her child actually has PKU, she'd have known since birth. She isn't telling the truth about at least one thing in her whole story, probably more than one aspect is fabricated. |
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Post by elaine on Aug 22, 2016 19:00:14 GMT
No aspartame- no phenylalanine in those products!  |
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flute4peace
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Post by flute4peace on Aug 22, 2016 19:23:15 GMT
Was he recently adopted by your friend and she is just now finding out? I've been baffled by this and I have been thinking about it all day. It is very odd that this child is 12 years old and she is just now finding out that he has PKU. Something doesn't quite make sense as all babies born in the hospitals here are tested for this. Even babies birthed at home would be tested by their pediatricians at their first appointment. And if he actually has PKU, and has been eating (and drinking) things with phenylalanine in them for all these years, I have to imagine the neurological impairment would be severe and obvious by now. I should clarify that she is just a facebook friend, so I don't know all the details. And I'm not the kind if person who asks them either. All I know is that she says she wasn't aware that when she gave him the sweetener drinks that it had an artificial sweetener in it. Whether that means she just didn't know what aspartame was at the time or didn't think it was harmful, I don't know. The drinks were Crystal Light. Are there warning labels on those boxes like the diet sodas have?Yes |
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Post by mymindseyedpea on Aug 22, 2016 19:51:08 GMT
No aspartame- no phenylalanine in those products! I'm pretty sure they used to though. I remember when I was on my pure foods kick that I would always knock aspartsme. And Crystal Light was my main target ...can't remember why though. I would always give it a dirty look when passing by the aisle it's on or make preach about how bad it is for you to boyfriend. I wasn't a supporter of diet sodas either and used lecture anyone I knew who would drink them. But that was like 6 years ago or more. I don't do the lecturing anymore. This guy I used to work with would always eat something that had ingredients that were on my hit list. I would ask him if he knew there was MSG in his chips. And he would say: YUM! lol That's when I realized that I can't stop others from what their food choices are. If they are aware of what they are eating and still choose to eat it then that's their path, and I have no business in getting involved. I don't even comment anymore when someone eats something I wouldn't. However, my manager gifted me a Nutrigrain bar yesterday. I told her I appreciate the offer but I'm sensitive to artificial flavor. Yup that was me doing a sneaky lecture. But wow I can't believe they have proplyne glycol as the third ingredient. Usually I see that in foods/ condiments that have it near the bottom. That stuff is found in beauty products. Ok, so that side of me is still present at times, just not as obsessive. It's just that my conspiracy eyes see that the food companies are getting better at hiding the crap they put in their food products and I hate the possibility that they could be getting away with it. But then there's this deeper side of me that knows to not get tangled up in that conspiracy fear stuff. And maybe this fb friend of mine is in the same boat. Maybe she did neglect that fact that her son carries the gene. I don't know her past. Maybe she made bad choices and is now learning how to make them up. Maybe she did have a home birth and wasn't aware of the gene and revealed itself when she have him Crystal Light. I don't think she has PKU though so maybe she did adopt him. I have nothing to let go of because I'm not focused on that. I'm interested in the general research of PKU. Like boyfriend said ( who really has no time to enlighten me about it ) I will learn more when I start my nutrition class. |
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Post by mymindseyedpea on Aug 22, 2016 20:01:23 GMT
This is just a Facebook friend? Not someone you know IRL? I was right then, you really don't know much about the situation. Other than finding out about PKU (which, by the way, is easily Googled), what is your interest in this? Sorry, I'm going backwards in replying. My interest is ( well 'was' , since I got some more understanding of it ) the difference between protein in foods and protein in modified drinks. Now I'm interested in the different types of proteins. Those with the 'ph stuff' and those with out. Does it only require the enzyme to break down the ph protein? This nutrition class I'm taking is going to teach me ( I can't recall the names right now ) but basically the atoms I guess of things like proteins. I imagine the atom of a protein with the ph stuff looks different then one that doesn't. Maybe boyfriend has his nutrition book around here so I can find that words I'm looking for... ETA: I found it. So, it's the bond angles I'm talking about. That show how much carbon and hydrogen atoms there are. I don't know if protein has that because I'm looking at fats. I turn to proteins and it shows the amino acid structure of leucine. I guess I will have to learn to figure out what each one looks like. Interesting that phenylanine is part of the essential amino acids. How do you sub for that? Is there an enzyme in these modified drinks that people with PKU drink? |
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Post by mymindseyedpea on Aug 22, 2016 21:09:41 GMT
Ok I'm reading about PKU in my book and it says in pregnant woman phenylketones can cause birth defects.
My fb friend states that aspartame gave her son PKU, but I think she meant she would drink Crystal Light a lot when she was pregnant and she didn't know about how that could cause birth defects for her child.
That makes a lot more sense.
The question is, can a pregnant woman without the PKU gene have birth defects from taking in an exsessive amount of phenylalanine?
It says in the book: In infants and young children phenylketones interfere with brain development and in pregnent woman they can cause birth defects in the baby.
But is that just for those with PKU?
All it says is: The breakdown of aspartame in the digestive tract releases and phenylalanine, which cannot be properly metabolized by individuals with PKU.
If 'they' consume large amounts of this amino acid, compounds called phenylketones build up in their blood.
In infants and young children ( with PKU? ) ,phenylketones interfere with brain development, and in pregnant woman...
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Post by pierkiss on Aug 22, 2016 21:41:41 GMT
Uh, what book are you reading? I'm not sure I believe that ingesting phenylalanine while pregnant causes birth defects in broad sweeping strokes. And I say that because I am currently pregnant and have had 3 others, and never ever have I been cautioned against eating foods/drinks with it as an ingredient.
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scrapaddie
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Post by scrapaddie on Aug 22, 2016 21:52:08 GMT
No aspartame- no phenylalanine in those products! I'm pretty sure they used to though. I remember when I was on my pure foods kick that I would always knock aspartsme. And Crystal Light was my main target ...can't remember why though. I would always give it a dirty look when passing by the aisle it's on or make preach about how bad it is for you to boyfriend. I wasn't a supporter of diet sodas either and used lecture anyone I knew who would drink them. But that was like 6 years ago or more. I don't do the lecturing anymore. This guy I used to work with would always eat something that had ingredients that were on my hit list. I would ask him if he knew there was MSG in his chips. And he would say: YUM! lol That's when I realized that I can't stop others from what their food choices are. If they are aware of what they are eating and still choose to eat it then that's their path, and I have no business in getting involved. I don't even comment anymore when someone eats something I wouldn't. However, my manager gifted me a Nutrigrain bar yesterday. I told her I appreciate the offer but I'm sensitive to artificial flavor. Yup that was me doing a sneaky lecture. But wow I can't believe they have proplyne glycol as the third ingredient. Usually I see that in foods/ condiments that have it near the bottom. That stuff is found in beauty products. Ok, so that side of me is still present at times, just not as obsessive. It's just that my conspiracy eyes see that the food companies are getting better at hiding the crap they put in their food products and I hate the possibility that they could be getting away with it. But then there's this deeper side of me that knows to not get tangled up in that conspiracy fear stuff. And maybe this fb friend of mine is in the same boat. Maybe she did neglect that fact that her son carries the gene. I don't know her past. Maybe she made bad choices and is now learning how to make them up. Maybe she did have a home birth and wasn't aware of the gene and revealed itself when she have him Crystal Light. I don't think she has PKU though so maybe she did adopt him. I have nothing to let go of because I'm not focused on that. I'm interested in the general research of PKU. Like boyfriend said ( who really has no time to enlighten me about it ) I will learn more when I start my nutrition class. If you are interested , then google and educate yourself. I Am sorry but my high school students taking biology know more about this than you do.. 1st... A person who has PKU is not a carrier. By definition, a carrier of PKU has one recessive gene for the disease and one normal Gene for digesting the phenylalanine. If this person happens to marry somebody else who is also a carrier, they have a 25% chance of having a child with PKU. There is the same likelihood with every pregnancy. Carriers do not show symptoms. Remember punnets square's? This is a simple punnets square 2nd, A child who has PKU and has not been on a diet to restrict protein (phenylalanine is an amino acid found in protein ), That child is going to be exhibiting obvious symptoms. At this point in his life, they would be pretty severe. 3rd.. You don't have to take a course in nutrition understand PKU. It's often discussed in a basic, even high school, biology course Btw ... If your boyfriend who has taken his course does not want to discuss it with you, it's either because it wasn't included in the course, or he just didn't understand it. Doesn't sound like a great guy Here is a link about the effects of untreated PKU www.ncbi.nlm.nih.gov/pmc/articles/PMC2802510/#!po=40.3846 4th... If a woman has PKU, she has to be on a special diet also especially when she's pregnant. And her child will definitely have PKU. A child is a part of homebirth is most certainly going to be tested by the pediatrician the first time the pediatrician says him Had the Crystal light in my cabinet does contain aspartame and does have a warning for phenylketonurics |
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scrapaddie
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Post by scrapaddie on Aug 22, 2016 21:58:48 GMT
Ok I'm reading about PKU in my book and it says in pregnant woman phenylketones can cause birth defects. My fb friend states that aspartame gave her son PKU, but I think she meant she would drink Crystal Light a lot when she was pregnant and she didn't know about how that could cause birth defects for her child. That makes a lot more sense. The question is, can a pregnant woman without the PKU gene have birth defects from taking in an exsessive amount of phenylalanine? It says in the book: In infants and young children phenylketones interfere with brain development and in pregnent woman they can cause birth defects in the baby. But is that just for those with PKU? All it says is: The breakdown of aspartame in the digestive tract releases and phenylalanine, which cannot be properly metabolized by individuals with PKU. If 'they' consume large amounts of this amino acid, compounds called phenylketones build up in their blood. In infants and young children ( with PKU? ) ,phenylketones interfere with brain development, and in pregnant woman... Phenyl ketones will cause brain damage in anybody. But most people can process the phenylalanine and break it down completely .... Phenylketones are the result of incomplete breakdown of phenylalanine... phenylketones do not accumulate . The gene for PKU it's actually a broken version of the gene for an enzyme needed and the breakdown of phenylalanine Drinking Crystal light or anything else with aspartame will only cause problems in the infant if a woman has PKU. And a woman with PK you will know that she has PKU |
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scrapaddie
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Post by scrapaddie on Aug 22, 2016 21:59:47 GMT
Uh, what book are you reading? I'm not sure I believe that ingesting phenylalanine while pregnant causes birth defects in broad sweeping strokes. And I say that because I am currently pregnant and have had 3 others, and never ever have I been cautioned against eating foods/drinks with it as an ingredient. You are quite correct. The only women who need to be concerned about ingesting phenylalanine while pregnant are women with PKU |
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Post by LiLi on Aug 22, 2016 22:13:09 GMT
@mymindseyepea Aren't you the pea that doesn't believe that medical conditions are anything but issues in the head?
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scrapaddie
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Post by scrapaddie on Aug 22, 2016 22:22:59 GMT
This is just a Facebook friend? Not someone you know IRL? I was right then, you really don't know much about the situation. Other than finding out about PKU (which, by the way, is easily Googled), what is your interest in this? Sorry, I'm going backwards in replying. My interest is ( well 'was' , since I got some more understanding of it ) the difference between protein in foods and protein in modified drinks. Now I'm interested in the different types of proteins. Those with the 'ph stuff' and those with out. Does it only require the enzyme to break down the ph protein? This nutrition class I'm taking is going to teach me ( I can't recall the names right now ) but basically the atoms I guess of things like proteins. I imagine the atom of a protein with the ph stuff looks different then one that doesn't. Maybe boyfriend has his nutrition book around here so I can find that words I'm looking for... ETA: I found it. So, it's the bond angles I'm talking about. That show how much carbon and hydrogen atoms there are. I don't know if protein has that because I'm looking at fats. I turn to proteins and it shows the amino acid structure of leucine. I guess I will have to learn to figure out what each one looks like. Interesting that phenylanine is part of the essential amino acids. How do you sub for that? Is there an enzyme in these modified drinks that people with PKU drink? pH protein??? Proteins are made of C, H,O, and N. Enzymes are proteins that control the rates of reactions. The enzymes most people are most familiar with our digestive enzymes. PKU is a disease that involves A digestive enzyme. The enzyme is phenylalanine hydroxylase. Enzymes work is kind of a lock and key mechanism. In order for an enzyme to work it has to fit onto the surface of a substance is going to work with, in this case phenylalanine. The mutant form of a gene changes the shape of the enzyme when the body tries to make phenylalanine Hydroxylase PH is a measure of acidity. Some enzymes work best in an acidic environment. The acids produced in your stomach prepare the food for digestion by creating an acidic environment. They are some rare forms of PKU that involve the inability to produce a cofactor. Cofactors are compounds necessary to enable the enzyme to work. And essential amino acids simply means that it must be ingested. The body cannot make it. A person with PKU does ingest protein and does ingest phenylalanine. They need phenylalanine just like any other person. But other people can completely digest the phenylalanine that they don't use. A person with PKU must limit the amount of protein so they don't have large amounts of phenylalanine to be broken down into its toxic byproducts |
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scrapaddie
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Post by scrapaddie on Aug 22, 2016 22:23:37 GMT
@mymindseyepea Aren't you the pea that doesn't believe that medical conditions are anything but issues in the head? I believe you are right about that! I wonder what mindset led to this? |
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scrapaddie
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Post by scrapaddie on Aug 22, 2016 22:29:32 GMT
One more comment to op... No one appreciates being lectured on their food choices.
Obviously, you are going to live a healthy life to 120, but you do need to brush up On basic biology and chemistry to get maximum benefit from your nutrition course
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Post by mymindseyedpea on Aug 22, 2016 22:43:09 GMT
@mymindseyepea Aren't you the pea that doesn't believe that medical conditions are anything but issues in the head? I believe you are right about that! I wonder what mindset led to this? Not in the head but an underlying cause that is subconscious is what I believe. What led me to this mindset is I have explored the deeper side to nutrition. Now I need to explore the scientific side and see if and how they go together. I'm doing this for nutrition and astrology. I've explored the deeper side to astrology and now I'm exploring the scientific side with astronomy courses. Why am I curious about the more physical aspect than just the metaphysical? Well, astrologically speaking, Saturn is transiting my 12th house and squaring Neptune. In astrology the 12th house is the house that influences deeper meaning. It's the house Pisces rules. Saturn is the influence of surfaced meaning. The physical aspect, rational, facts...etc So, Saturn is bringing surfaced influence to my Pisces house. And collectively it is challenging Neptune. Neptune is the influence of deeper meaning. Planet Pisces basically. It will be interesting to see the similarities in these two fields. ( astrology and astronomy ) |
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scrapaddie
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Post by scrapaddie on Aug 22, 2016 22:51:15 GMT
I believe you are right about that! I wonder what mindset led to this? Not in the head but an underlying cause that is subconscious is what I believe. What led me to this mindset is I have explored the deeper side to nutrition. Now I need to explore the scientific side and see if and how they go together. I'm doing this for nutrition and astrology. I've explored the deeper side to astrology and now I'm exploring the scientific side with astronomy courses. Why am I curious about the more physical aspect than just the metaphysical? Well, astrologically speaking, Saturn is transiting my 12th house and squaring Neptune. In astrology the 12th house is the house that influences deeper meaning. It's the house Pisces rules. Saturn is the influence of surfaced meaning. The physical aspect, rational, facts...etc So, Saturn is bringing surfaced influence to my Pisces house. And collectively it is challenging Neptune. Neptune is the influence of deeper meaning. Planet Pisces basically. It will be interesting to see the similarities in these two fields. ( astrology and astronomy ) You will learn that astronomy has nothing to do with astrology! Perhaps you will learn that astrology carts are totally outdated. |
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Post by mymindseyedpea on Aug 22, 2016 22:52:46 GMT
One more comment to op... No one appreciates being lectured on their food choices. Obviously, you are going to live a healthy life to 120, but you do need to brush up On basic biology and chemistry to get maximum benefit from your nutrition course We'll see how it goes. I never took Chemistry in HS, and didn't do too well in Biology. |
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Post by mymindseyedpea on Aug 22, 2016 22:56:02 GMT
Not in the head but an underlying cause that is subconscious is what I believe. What led me to this mindset is I have explored the deeper side to nutrition. Now I need to explore the scientific side and see if and how they go together. I'm doing this for nutrition and astrology. I've explored the deeper side to astrology and now I'm exploring the scientific side with astronomy courses. Why am I curious about the more physical aspect than just the metaphysical? Well, astrologically speaking, Saturn is transiting my 12th house and squaring Neptune. In astrology the 12th house is the house that influences deeper meaning. It's the house Pisces rules. Saturn is the influence of surfaced meaning. The physical aspect, rational, facts...etc So, Saturn is bringing surfaced influence to my Pisces house. And collectively it is challenging Neptune. Neptune is the influence of deeper meaning. Planet Pisces basically. It will be interesting to see the similarities in these two fields. ( astrology and astronomy ) You will learn that astronomy has nothing to do with astrology! Perhaps you will learn that astrology carts are totally outdated. Well the dates of when the Sun enters a new astrological sign doesn't match up with when the Sun enters a new constelation. It's on the 21rst of every month according to my astronomy book and that doesn't make any sense to me. |
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scrapaddie
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Post by scrapaddie on Aug 23, 2016 2:04:57 GMT
You will learn that astronomy has nothing to do with astrology! Perhaps you will learn that astrology carts are totally outdated. Well the dates of when the Sun enters a new astrological sign doesn't match up with when the Sun enters a new constelation. It's on the 21rst of every month according to my astronomy book and that doesn't make any sense to me. All my life I thought I was born on the cusp between Libra and Scorpio....?turns out I am Virgo! And thirteen sign??!! |
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scrapaddie
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Post by scrapaddie on Aug 23, 2016 2:06:46 GMT
One more comment to op... No one appreciates being lectured on their food choices. Obviously, you are going to live a healthy life to 120, but you do need to brush up On basic biology and chemistry to get maximum benefit from your nutrition course We'll see how it goes. I never took Chemistry in HS, and didn't do too well in Biology. Chemistry and physics are both part of Astronomy.... |
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Post by mymindseyedpea on Aug 23, 2016 5:35:51 GMT
Well the dates of when the Sun enters a new astrological sign doesn't match up with when the Sun enters a new constelation. It's on the 21rst of every month according to my astronomy book and that doesn't make any sense to me. All my life I thought I was born on the cusp between Libra and Scorpio....?turns out I am Virgo! And thirteen sign??!! That sounds closer to sidereal astrology. When I read charts I go by western and my reading are accurate. In sidereal astrology they go by what constelation the sun is in in the sky. In western astrology they go by what constelation the sun is in from earth's perspective. Since we are on earth that's what I go by too. The sidereal dates shift every 70 years or so by a day or something like that. So yes you may have the sun sign of Ophicius in sidereal astrology ( or whatever kind it was from the link you shared ) . But in western astrology you may either be a Virgo or Libra. If you are completely on the last day of Virgo then it would depend on what time you were born and where to determine whether the sun was 29 degrees Virgo or 0 degrees Libra. The cool thing about any type astrology that goes by the planets is you don't only have a sun sign. You have a moon sign and a rising sign too, as well as a Mercury, Venus, Mars...etc |
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