These 3 statements are incorrect
Originally Posted by ann_of_loxley
Well, since PKU is something inherited from both parents, if you know that both parents do not have this biochemical abnormatility (or that at least one of you doesn't), and you also feel the heel prick is 'too painful' - then you can feel comfortable in opting out of it.
Also - maybe their diet is already suited to a child with PKU? (for example, I know mine is) - So they may feel comfortable in testing the child at an older age. Because treatment for PKU is just dietary changes with a special diet.
Also - from my understanding, it needs to be done within the first month but not right after the baby is born as the test results will be inaccurate - yet many hospitals in America do the test within the first few days of a babies life - which is pointless.
My husband has pku, so you can imagine the extensive research we have done, and genetisits and nutritionists we've talked to.
There is no such thing as carrier testing for PKU. You cannot know you are a carrier unless your child has pku, or your parent has pku. For example, all our kids will be carriers b/c of my husband. Even if all our kids are negative its still no guarantee that Im not a carrier (If i am our kids have a 50% chance of having the disease, for two carriers its 25%) There is a test, that in Canada costs $7500, that can look for a small abnormality which tells you the percentage of liklihood that you are a carrier (like the triple screen test during pregnancy for downs). It also yields so many innacurate results that no provider here will recommend it.
You cannot have a phe free diet. Its not protein you need to avoid: its phenylalanine; it just so happens meat is a high source of Phe. Phe is in bread, pasta, alcohol, some veggies...etc...It would be virtually impossible to have a no/low phe diet unless you were specifically avoiding phe - but why would you?
Pku testing can be done at anytime once the baby has started to digest breastmilk - not colustrum. You can test a baby at 3 months, 2 yrs. Delays will start to show at around 8 weeks. Its important for those with pku to go on the low phe diet asap, so its better to start at 2yrs than not at all.
Obviously, I recommend the pku,metabolic diseases test...