Community Discussion Forum Parent support Positive PUKer’s

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  • #7741
    Avatar of Katie

    Hi, I have recently had a baby with PKU and have been reading some of personal stories and discussion notes which seem to make for quite sad reading. Is there any one out there with PKU who can reassure me that whilst inconvenient, PKU isn’t all that awful. Also are there any parents out there who have had preimplatation genetic diagnosis for latter pregnancies?[/FONT]

    Avatar of Tracie

    Hi KT6048, nFirst of all congrats on ur new Baby. nAnd no PKU is not as bad as it sounds. nReally its just a special diet,and i know with my Husband,and daughter when they get the typical flu or cold i wont get it.
    I personnally think its our diets that we are on.They are very healthy.Just keep ur self informed.There losts of new products out there,and that is kind of the fun part experimenting. nAll in takes is an involved family,and knowledge. nThere’s a youg lady on this site BreaMarie she is very knowledgable,and knows alot of different recipes,and different types of formulas or drinks.
    I get to start Kuvan tomorrow,and i am sooooo excited to feel the outcome. nDon’t worry were all here to support one another,but sometimes we need to vent too.
    Take Care, nTracie-PKU

    Avatar of Marie

    Hi I have three boys. My youngest is 19month old with pku. It was quite a shock when we found out that he had pku because there was no history of it in our family. He is a very happy healthy toddler that gets into everything and he makes sure that his opinion is known. The hardest part of the diagnosis for me was the diet, and the first few months were the hardest. Once I understood the diet everything else fell into place. It has become second nature for me to figure out what he can eat . The diet can be hard to follow but I think that it is only as hard as you make it. If you treat it like an impossible challenge it will feel that way, but if just take one day at a time it does not feel so overwhelming. So my advice is simply follow the diet and your baby will be just as wonderful as every other baby in the world!

    Avatar of Breanna

    Although having PKU has its ups and downs I do not regret being born with it because the reality is there are many worse disorders out there. At least with PKU I am able to function in society, others aren’t so lucky . For the past two years my mom and I have been asked to speak to medical students about PKU at the Medical College of Wisconsin and every year my dietitian asks a seven year old boy born with MSUD (another disorder) and his grandmother to speak as well. His disorder is life threatening and almost anytime he becomes sick he has to be hospitalized. With PKU our levels do go up a bit if we’re sick, but we definitely do not need to be hospitalized. My dad

    Avatar of Katie

    Thank you all for your input. I really appreciate it. Brea Marie I think that you are correct and that people use this forum for support and advice and that is why there are some sad stories – just when you are frightened for your child and their future life, some of these stories really jump out.
    I get more and more positive as the weeks go on and as my daughter reaches the various milestones. I am confident that I will be good at encouraging her to stick to the diet, I will just have to make sure that her food is varied and enjoyable. I will have to start experimenting!!! Like you say most people are on some kind of diet – whether for weight or for allergies. My husband jokes I am always on a diet!
    My husband is reading up a lot on Kuvan and we would be really interested to hear how you get on Tracie – please keep us informed and good luck.
    Tracie, Jammnm and BreaMarie – thank you so much for making a nervous mum feel better.

    Avatar of Breanna

    Hi again,
    I’m glad that you feel a little bit better! If your daughter follows her diet she can live a completely normal life. Next fall I will be going to college for Nursing/Pre-med (I want to make my way to medical school). I’m sure when I was born my parents did not think that would be in my future!! They learned fast that my PKU was not going to stop me from doing everything that my siblings did.
    Tracie- nHave you started Kuvan yet and do you know if your a responder yet? I hope so! When I began Kuvan over a year ago we were very worried that I would not respond because I have Classical PKU. My mom was so worried that I would get bummed out if it did not work that she was very hesitant to let me start. At the time she was told that whether I would responded or not was based on my PKU mutation, but they’re learning today that anyone with PKU could potentially respond to Kuvan regardless of the type of PKU they have. That’s exciting! Anyway good luck! Keep us updated.

Viewing 6 posts - 1 through 6 (of 6 total)
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