Topic: Warning Phenylketonurics: Contains L-Phenylalanine

Excerpt: Have you ever noticed this on your product labels - WARNING: The amino acid L-phenylalanine should not be used by pregnant women or by those who suffer anxiety attacks or those who have high blood pressure or with pre-existing pigmented melanoma (form of cancer), or people with phenylketonuria (PKU). The... Continue Reading Warning Phenylketonurics: Contains L-Phenylalanine from Dr. Hull's free monthly ezine, The Healthy Newsletter.

Re: Warning Phenylketonurics: Contains L-Phenylalanine

Hi

Having a 2 year old with Classical Phenylketonuria I was horrified to read about your article regarding Neotame.  As you can imagine I am always reading labels and ingredients when I buy products from the supermarket, but knowing that they do not have to state if Neotame is in a product is in my eyes a crime.

I cannot imagine giving my daughter something without knowing if it is potenitally harmful to her.  Surly there must be something the government can do to stop this from happening.  I thank you for bringing this attention to worried mothers like myself.

Re: Warning Phenylketonurics: Contains L-Phenylalanine

Unfortunately, the government is why this has happened - they gave in to the pressures from the sweetener industry. You are correct - it is a crime. You have a challenge ahead of you, but here is some advice - if your child begins to show any adverse health symptoms out of the ordinary, make sure to document the products (and meds) she was using at that time. Then, write to the companies and ask for thier complete ingredient list, even what is less than 2% added - if neotame is in this product - you have a lawsuit you could pursue.

I am not one to support lawsuits, but in cases like this, set the corporations up if you suspect they have hidden in a product this much phenylalanine  that has not been labeled for PKU - they need to have a comeuppance. What they are doing is very VERY wrong.

I am so glad that you are more aware of this now.

Re: Warning Phenylketonurics: Contains L-Phenylalanine

My 14 month old daughter was diagnosed with PHACES Syndrome with intracranial hemangiomas in Sept 2007.  It is basically the strawberry hemangiomas on her: Upper eye lid, left side of face, nose, upper lip, throat, back of head. Internally: airway, brainstem, neck, behind her left eye and heart (which hasn't been found yet-yay).  She was on chemo/steroids and an array of other meds through her oncologist at Devos Children's Hospital in Grand Rapids Mi and Cincinnati Childrens Hospital in Ohio.  She has the worst case seen in Michigan.  Through my research with wikipedia, I have found many links to aspartame!! I am a type one diabetic since the age of five.  When I say I consumed a lot of aspartame, I mean, my main diet during my pregnancy consisted of 10-15 diet drinks per day and pretty much anything/everything "sugar-free" and "diet".  I am going to check and see what the test showed for PKU at her birth, since I found a link between that as well.  I am currently self-treating my daughter with ginger, shiitake supplement, and soy milk, and I have gotten much negative feedback from her oncology team at Devos.  I have initially questioned her team at CC Hospital on the possiblity of the cause of aspartame poisoning in the womb, since they have a more vested interest in my daughters care, however, actually getting down there to see them is another long story.  Her oncologist at Devos told me that they used to see 1-4 babies a year born with hemangiomas and now see 1-4/month.  My daughter has the worse case of hemangiomas you can have (PHACES).  Myself, I have stopped all aspartame use as of a month ago and I noticed results the next day!  I have been diagnosed with heart disease, hearing/vision loss, memory loss, depression/anxiety, panick attacks, and others, and I have noticed others that I did not even bring to doctors attention (for fear of being a confirmed hyperchondriac).  I am very eager to hear your feedback on this horrible, horrible outcome.  I will speak out, and I will be heard, for my daughter's sake, and because God tells me it is the "right thing to do"!!   Thankyou so much for your time!

Re: Warning Phenylketonurics: Contains L-Phenylalanine

I hope everyone on this forum reads this - this is an incredible story, and you are dealing with it in an incredible way.

Just seeking alternative answers and being on this forum is a sign that you will succeed!  Never give up!

Re: Warning Phenylketonurics: Contains L-Phenylalanine

I have been taking DL-Phenylalanine for almost 2 weeks and they seem to be doing some good. I am just finishing my first DL-Phenylalanine bottle.I have energy again and I am now healthy Brain. I'm hoping to see more improvement.

Re: Warning Phenylketonurics: Contains L-Phenylalanine

I would add a complex amino acid supplement blend to that, though. Research shows that taking isolated amino acids can be dangerous - the body expects the "set " of at least eight aminos working together. This is how nature does it; so simply add an amino acid complex to the extra phenylalanine, and the brain should be very satisfied.