Community Discussion Forum Parent support Desserts Reply To: Desserts

Avatar of Breanna

Hi Roslyn,
I’ll get the recipes to you, but right now I’m at my aunts house babysitting, so I’ll get the recipe once I get home. Yes for the most part it is just the fruit sherberts. I don’t remember the phe on them but I’m pretty sure something like 1/2c of it is fine.
Also, I have a question. Your son has PKU too? He isn’t just a carrier? We know that both of my parents are carriers and that is how me and my sisters actually have PKU. People who are carriers aren’t effected by PKU in anyway, they just carry one PKU gene (you need two to have PKU). In fact my parents didn’t even know they were carriers until I was born and there are many people out in the world who are carriers for PKU and other genetic disorders, but the only way they will ever know is if they have a child with another carrier and have a baby with that disorder. Anyway, I was just wondering because if your son does actually have PKU then he is one lucky guy, most people with PKU who are never diagnosed suffer from severe mental retardation by the time they start kindergarten.
I know for me when I was little even with a level of 8 or 9mg/dl (or 480-540 for the big numbers) I would get very tired, aggressive and cranky…basically you could tell that my level was high. Somebody who is off diet and eating a completely normal diet who has PKU would probably have a level of 25mg/dl+ (again 1500 in the big numbers). So I would assume they would have much worse issues then what I had with levels of 8 or 9. Just curious! nBre

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