Community Discussion Forum Parent support My son has PKU, how do I deal with this? Reply To: My son has PKU, how do I deal with this?

Avatar of Breanna

First of all congratulations on your new baby boy. I'm sure having a new baby is exciting, but given the circumstances probably very overwhelming as well.

I really want to stress that you and your husband are NOT to blame. You did not know you were carriers just like my parents had no clue that they were carriers of PKU until after I was born and diagnosed with it. I have never once blamed my parents for the fact that I was born with PKU, and I am sure your son will feel the same way.

In fact as crazy as this may sound there are a many opportunities that I have been able to enjoy, BECAUSE I have PKU. I have made some amazing friends through PKU support groups. I've attended events that my local support group holds (camps, holiday parties, picnics, cooking classes, etc…if you are interested in finding a local support group let me know, and I would be more than happy to help). I am more health conscience than my peers, and I don't think I would be interested in working in the medical field if I didn't have PKU. Other than that I am an active dancer, I love bike riding, I currently work in a child care center, and I'm in school for nursing and pre-medicine. So yes, I do have slightly different eating habits, but I am still enjoying my life! This is just one of those 'surprises' that fell into our laps, and we have the make the best of it. I can promise you that with proper treatment your son will lead a very happy, healthy, and normal life.

I am not sure how familiar you and your husband are with the science of genetics, so if you already know what I am going to tell you feel free to ignore this ;). You and your husband are carriers, and this means you each have one mutated gene and one normal gene. In order for your children to have PKU they have to receive two mutated genes, one from each parent. Because you each have two different genes that you could potentially pass onto your child, there is a 1/4 chance that your child will inherit the disorder. Parents do have to make the decision of whether or not they would like to have more children despite the fact that the new baby could also have PKU. My mom has always told new parents of babies born with PKU to give it awhile. See what PKU is all about before you decide to rule out having more children. This is going to be a personal decision that only you and your husband will be able to make. In my families case I have eight siblings. I am the third child in my family, and two of my younger sisters also have PKU, so obviously PKU was not a deciding factor as to whether or not my parents had more children. For me having sisters that have PKU has been helpful. It gives me someone to relate to and my sisters someone to look up to.

I don't view PKU as a horrible disorder, and I know there's always someone worse off than I am. It definitely requires some attention, but it does not dictate my life. My dietitian, who happens to be diabetic, told me to think of PKU like you would diabetes. It is a dietary modification with a couple extra tasks involved. Diabetics monitor what they eat, test their blood, and take insulin. People with PKU monitor how much protein they eat, test their phenylalanine levels, and drink their metabolic formula. Other than that they are able to function in society just like everyone else.

Yes, there is a vast list of foods that people with PKU cannot eat, but there are companies that develop low protein foods. These foods are foods such as breads, pastas, baked goods, and even imitation meats that are medically modified so that they do not contain protein in them. These companies work hard to provide new, healthy, and tasty foods for people with PKU, so I promise your little guy won't go hungry :). Fruits, veggies, snack type foods, and in some cases small amounts of grain products can also be worked into the diet as well.

I hope this helps. Please feel free to send me a message anytime.

~Breanna 18 CPKU

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