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#5809
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BreaMarie91
Member

PKU basically means that an enzyme in the liver cannot proccess and amino acid called Phenylalanine (which is found in protein) into Tyrosine like it does in people who don’t have PKU. So if a person with PKU eats more Phenylalanine then their body can handle at one time it starts to build up in their blood stream and eventually can cause headaches, lack of concentration, lack of energy, poor balance, tremors/shakes, and eventually mental retardation. But please TRY NOT TO PANIC!
Your granddaughter will have to be put onto a special low protein diet. This diet will for the most part exclude things like meat, dairy, most grain products, beans, nuts and other things high in protein. So she will basically be a vegetarian and there are also special low protein foods that special companies make that you can get for her when she is older. The special foods are like imitations of pasta, breads, baked goods ect. She will also need her blood taken on a regular basis to monitor and make sure that there is not to much Phenylalanine (or Phe) in her blood and she will have to drink a special metabolic formula for the rest of her life to get the nutrients that she is missing in her diet.
Also, I have something to say about the breastfeeding. I also come from a family of 7 kids (I’m the third and there are 6 girls and one boy). Out of the seven of us I have PKU along with my 8-year-old sister. When I was born the doctors told my mom that there was no possible way for her to breastfeed me and because my mom was young and never had a PKU baby before she believed them and stopped breastfeeding me at 9 days. By the time Erica (the 6th baby and the other one with PKU) was born my mom had investigated and learned that there were ways for her to breastfeed. So she breastfed Erica until she was atleast a year old using a supplemental device (I’m not positive on the details because I was only 8 at that time). She breastfeed and gave Erica her formula at the same time and Erica’s blood levels were wonderful and to this day she is perfectly normal. I know there are other parents out there who have breastfeed there PKU kids, so if that is something your daughter really wants to do, then I would say do some investigating because it IS possible!!
I know this all might be alittle scary and defintally new, but hang in there! Both my sister and I are growing up just the same as our other 5 siblings, we just eat alittle bit differently. I compete in dance (tap, jazz, ballet and Pointe), teach dance classes, tutor at my younger sisters elementary, I get good grades and someday I want to work in genetics with kids with genetic disorders (mainly PKU). So my point is from just looking, you would never know that I am any different then any other kid out there and the same goes for my sister. nSorry for the very long post, and hang in there! nBreanna 16 (on Saturday) w/Classical PKU

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