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Post by mymindseyedpea on Aug 21, 2016 4:44:37 GMT
I have a friend whose son can't have protein or it will result in brain damage. He can only have 5 grams a day. The rest he gets from a modified drink. Is this PKU? That's what she says he has. And if so, one can't have protein that has to be broken down due to the lack of enzyme, so that's why the protein in the drink is different? I'm mostly curious about the difference between eating protein and taking a modified drink that has protein in it. And is there any link between protein causing damage to the brain? I asked boyfriend this who just took a nutrition class last semester, and all he said is I will find out when I take the class myself that starts next week. I guess he doesn't know either  I would just love some clarity on this, thanks! |
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Post by Eddie-n-Harley on Aug 21, 2016 4:52:43 GMT
www.mayoclinic.org/diseases-conditions/phenylketonuria/basics/definition/con-20026275The main treatment for phenylketonuria includes: * A lifetime diet with very limited intake of protein, because foods with protein contain phenylalanine * Taking a PKU formula — a special nutritional supplement — for life to make sure you get enough essential protein (without phenylalanine) and nutrients that are crucial for growth and general health
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Deleted
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Post by Deleted on Aug 21, 2016 4:53:12 GMT
Yes, PKU can cause irreversible brain damage. You lack the enzyme needed to break down the amino acid pku that is found in protein.
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Post by mirabelleswalker on Aug 21, 2016 4:54:28 GMT
It's not the protein that's the problem. It's the phenylalanine in the protein that can't be broken down. The drink is probably a protein formula that doesn't contain phenylalanine.
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Post by Eddie-n-Harley on Aug 21, 2016 4:57:32 GMT
If you drink soda, your can probably has a warning that says PHENYLKETONURICS: CONTAINS PHENYLALANINE.
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Deleted
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Post by Deleted on Aug 21, 2016 4:59:24 GMT
It's not the protein that's the problem. It's the phenylalanine in the protein that can't be broken down. The drink is probably a protein formula that doesn't contain phenylalanine. Yup, those with pku take phenylalanine-free formulas. My son was tested for it and it was negative but he is still on an amino acid based broken down protein medical formula due to short bowl syndrome, allergies, etc I believe his is one that is safe for pku |
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Post by mymindseyedpea on Aug 21, 2016 5:35:03 GMT
If you drink soda, your can probably has a warning that says PHENYLKETONURICS: CONTAINS PHENYLALANINE. 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. But I'm not sure if he was able to take protein just fine before that. I guess if he did then I could see that as a possibility. |
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Post by mymindseyedpea on Aug 21, 2016 5:39:19 GMT
It's not the protein that's the problem. It's the phenylalanine in the protein that can't be broken down. The drink is probably a protein formula that doesn't contain phenylalanine. Yup, those with pku take phenylalanine-free formulas. My son was tested for it and it was negative but he is still on an amino acid based broken down protein medical formula due to short bowl syndrome, allergies, etc I believe his is one that is safe for pku Ok, so the protein in your son's medical formula is already broken down, that's what I thought. My friend wants to get him on a different formula because there is so much sugar in the one he has. |
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Deleted
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Post by Deleted on Aug 21, 2016 5:42:52 GMT
If you drink soda, your can probably has a warning that says PHENYLKETONURICS: CONTAINS PHENYLALANINE. 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. But I'm not sure if he was able to take protein just fine before that. I guess if he did then I could see that as a possibility. Im not a doctor but PKU is a genetic, inherited condition. You dont get it from drinking aspartame. Its often discovered at birth but can present itself later in life |
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Post by mymindseyedpea on Aug 21, 2016 5:50:20 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. But I'm not sure if he was able to take protein just fine before that. I guess if he did then I could see that as a possibility. Im not a doctor but PKU is a genetic, inherited condition. You dont get it from drinking aspartame. Its often discovered at birth but can present itself later in life I see. I wonder if drinking too much though can risk you to become resistant to it. Like for example, how drinking enough almond milk could make you become allergic to almonds. |
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Post by mirabelleswalker on Aug 21, 2016 5:54:22 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. As @calimom2 said, it's genetic. It is not acquired. If you have the gene from your mother and your father, there is no escaping PKU. |
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Deleted
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Post by Deleted on Aug 21, 2016 6:00:37 GMT
Im not a doctor but PKU is a genetic, inherited condition. You dont get it from drinking aspartame. Its often discovered at birth but can present itself later in life I see. I wonder if drinking too much though can risk you to become resistant to it. Like for example, how drinking enough almond milk could make you become allergic to almonds. There is no becoming resistant to it. You have to follow a very strict diet the rest of your life. |
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Deleted
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Post by Deleted on Aug 21, 2016 6:01:55 GMT
Also with pku you are to stay away from phenylalanine or you will have flare ups of the symptoms.
He was taking in too much and in turn had symptoms.
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Post by mymindseyedpea on Aug 21, 2016 6:02:08 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. As @calimom2 said, it's genetic. It is not acquired. If you have the gene from your mother and your father, there is no escaping PKU. So even though I'm not sure he has the gene, what would happen if he does have it and drank drinks with aspartame on a daily basis? Brain damage? I think he has already gotten some brain damage and that's how they found out he has PKU. |
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Deleted
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Post by Deleted on Aug 21, 2016 6:04:29 GMT
Genetic, all babies are tested for it.
The PKU diet is very specific. Down to counting how many grapes you can have. All package will have warnings on it. This is a diet that must be closely watch and work with a registered nutritionist.
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sueg
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Post by sueg on Aug 21, 2016 6:07:32 GMT
So even though I'm not sure he has the gene, what would happen if he does have it and drank drinks with aspartame on a daily basis? Brain damage? I think he has already gotten some brain damage and that's how they found out he has PKU. 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. |
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Post by mymindseyedpea on Aug 21, 2016 6:12:32 GMT
So even though I'm not sure he has the gene, what would happen if he does have it and drank drinks with aspartame on a daily basis? Brain damage? I think he has already gotten some brain damage and that's how they found out he has PKU. 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. |
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Post by miominmio on Aug 21, 2016 6:14:26 GMT
As @calimom2 said, it's genetic. It is not acquired. If you have the gene from your mother and your father, there is no escaping PKU. So even though I'm not sure he has the gene, what would happen if he does have it and drank drinks with aspartame on a daily basis? Brain damage? I think he has already gotten some brain damage and that's how they found out he has PKU. There is no way he will have PKU without having the gene. None. And yes, if someone with PKU eats or drinks anything containing phenylalanine, they will develope (irreversible) brain damage. Wasn't this person tested at birth? |
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Post by mirabelleswalker on Aug 21, 2016 6:18:38 GMT
I think he has already gotten some brain damage and that's how they found out he has PKU. PKU is associated with a lot of developmental delays and intellectual disabilities. |
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Post by miominmio on Aug 21, 2016 6:22:01 GMT
If you drink soda, your can probably has a warning that says PHENYLKETONURICS: CONTAINS PHENYLALANINE. 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. But I'm not sure if he was able to take protein just fine before that. I guess if he did then I could see that as a possibility. If she claims that, that's certainly not something her son's doctor has told her. PKU is genetic, you don't get it from aspartame, bacon, sugar or smoking for that matter. It's genetic! And since babies are routinely screened for this condition, she would have known. Unless she had a home birth and decided against the test, then I can see that it went undetected until the brain was damaged. |
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Post by miominmio on Aug 21, 2016 6:30:44 GMT
If you drink soda, your can probably has a warning that says PHENYLKETONURICS: CONTAINS PHENYLALANINE. 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. But I'm not sure if he was able to take protein just fine before that. I guess if he did then I could see that as a possibility. He might have developed brain damage because of the aspartame (and other things containing phenylalanine in his diet), but he did not get PKU because of aspartame. Doesn't you friend understand what "genetic" means? |
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Deleted
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Post by Deleted on Aug 21, 2016 6:41:15 GMT
This sounds like something has happened and she is trying to blame aspartame.
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Post by pierkiss on Aug 21, 2016 10:36:50 GMT
If you drink soda, your can probably has a warning that says PHENYLKETONURICS: CONTAINS PHENYLALANINE. 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. But I'm not sure if he was able to take protein just fine before that. I guess if he did then I could see that as a possibility. PKU is a genetic disorder. It is present from birth, and fortunately is something that the hospitals test for immediately. I'm not sure how she would have given a newborn soda, unless she means she gave it to him while he was in utero? I'm almost 100% positive that PKU is not something that can be developed later in life (it's been a while since I studied this in bio classes). I have a friend who just gave birth to a baby who has PKU. She is understandably terrified as their world has just been flipped upside down. Good luck to your friend as she learns to navigate this with her kiddo! |
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flute4peace
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Post by flute4peace on Aug 21, 2016 10:44:50 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. But I'm not sure if he was able to take protein just fine before that. I guess if he did then I could see that as a possibility. PKU is a genetic disorder. It is present from birth, and fortunately is something that the hospitals test for immediately. I'm not sure how she would have given a newborn soda, unless she means she gave it to him while he was in utero? I'm almost 100% positive that PKU is not something that can be developed later in life (it's been a while since I studied this in bio classes). I have a friend who just gave birth to a baby who has PKU. She is understandably terrified as their world has just been flipped upside down. Good luck to your friend as she learns to navigate this with her kiddo! My son grew up with a friend who has it. He follows the diet carefully, was able to play sports etc. He's 20. |
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flute4peace
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Post by flute4peace on Aug 21, 2016 10:47:35 GMT
If the kid's been eating protein for 12 years, wouldn't that affect him just as much as the aspartame?
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scrapaddie
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Post by scrapaddie on Aug 21, 2016 10:48:51 GMT
Aspartame contains phenyalanine and people with pku have to avoid it. Aspartame does not cause pku.
Wasn't this child tested at birth. It is required in my state.
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scrapaddie
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Post by scrapaddie on Aug 21, 2016 11:17:01 GMT
I don't want to get judgey and I know we don't have the whole story, but it sounds as if a whole lot of ignorance has damaged this child. The child should have been tested at birth and my pediatrician double checked at the 2 week check up ( this was 34 years ago). If a child does have pku, the parents are fully educated... They are NOT just handed a sheet of instructions.
If the child was not tested because of a home birth, I would imagine the pediatrician would have done it....
Sounds like the mother is trying to blame the brain damage on sodas... Either to avoid blame herself for the lack of care, or to she's angling for a settlement....
And yes, I know I am being totally judgey, but a child Is brain damaged for no good reason!
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Post by christine58 on Aug 21, 2016 11:31:54 GMT
So even though I'm not sure he has the gene, what would happen if he does have it and drank drinks with aspartame on a daily basis? Brain damage? I think he has already gotten some brain damage and that's how they found out he has PKU. All children are tested at birth so they would have known at that point. |
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Deleted
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Post by Deleted on Aug 21, 2016 12:37:14 GMT
Is this PKU? That's what she says he has. so he is 12. did she just find out that he has PKU? or has she known since he was an infant? sounds like she misunderstood the dr. and is very confused. It's very interesting the understanding that people get from their care providers when they use medical speak . |
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Post by lancermom on Aug 21, 2016 12:58:39 GMT
My niece was diagnosed at birth. She can handle more than five grams, but still limited. So sad to think she has to have a special birthday cake, can't just open fridge and grab something to eat.
It can cause all kinds of problems from physical to mental health. My niece was tested at birth, then weekly for a long time. Not sure how often she goes in now, but mom tests her at home.
Luckily WI has a great program and lots of assistant because special formula is expensive.
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