Community Discussion Forum Parent support lots of questions Reply To: lots of questions

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I just thought I’d drop by and leave a post. They put your daughter in the hospital for a 5.6? That seems odd since levels are usually supposed to be between 2-6. Well I guess it maybe because she is a baby.
I can’t even imagine how hard it must be coming into the world of PKU like this, seeing as I’m coming from the point of view of a Phenylketonuric, not a parent. How strict of a diet she will have to be on will all depend on how much Phe she will be allowed.
In reality, she will just have to eat differently, measure her food, drink her formula and of course the blood tests. I guess the only thing that has ever bugged me is the blood tests, but that is only because I don’t like needles.
Believe me I’ve had some blood levels there were around 12 before! Nothing really happened, I was alittle tired, maybe cranky and sometimes got a mild headache but that was about it. In order for Phe levels to really start to have an effect they would have to be high for a longer period of time. Besides some levels hear and there my levels mainly stay around 4-8mg/dl and since January I’ve managed to keep them between 2-4mg/dl!
Even though I have had good levels and some not so good levels. And even though I went through some periods where I didn’t drink all my formula, I’m still growing up just like any other teen in my highschool. I get good grades, I compete in dance, I teach dance classes at my dance studio, I tutor at my siblings elementary school and I’m planning to go to college after highschool and someday I want to work in genetics as a medical geneticist. My point is that even though I’ve had ups and downs, overall I’m fine! The same applies for my little sister. In the long run if you have a few not so good levels hear and there it’s not going to do deathly damage. It’s just that when there is a bad level you want to nip it in the bud before it gets worse.
I know this is all probably confusing, but I promise as time goes on you will get used to things and everything will mello down. To this day my mom never stresses about me and my sister’s diet. I control my diet on my own and my sister is almost independent with her food aswell and PKU is just apart of our lives. Just hang in there! You sound like a wonderful mother and it’s okay to be worried. It shows that you truly care. And I really think you parent’s of PKU kids are very strong, I’ve had PKU all my life so I’m used to it, but all the parents have to alter their lives and adjust for us. Just keep doing what your doing!
Breanna 16 (on the 9th) w/CPKU

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