Seeking Advice

Seeking Advice

Avatar of Tiffany

Seeking Advice

July 25, 2010 in Uncategorized

Hi my son is 3 weeks old and we were informed when he was 10 days old that he has PKU, my husband and I are still trying to absorb everything and come to terms with what this means. We have two girls who don't have PKU and had never even heard of it or had any idea that we were carriers of it until my sons screening test showed up that he had PKU. I am very scared for his future and I guess am just looking for a bit of reassurance from experienced parents of PKU kids or someome who has lived with PKU that it all will be ok, you only want the best for your kids and at the moment I am fearful of everything from him having to eat different foods from my husband and I and our two girls and resenting it, to him fitting in with his peers as his gets older, to him rebelling and not eating what he is supposed to...... It is very new for us and I hope in time that it will all become second nature, we live in Melbourne and are getting a lot of support from the Childrens hospital but it would be nice to actually talk to people that are in the same situation. Thanks Tiffany

12 Reviews of Seeking Advice

  1. Registered: Feb 1, 2010

    Posts: 0

    Tucson, Arizona

    Hi, Tiffany. Congratulations on your little guy. His picture is adorable! I am Kristi, and I’m a 28 year old with PKU. The experience, emotions and worries sound very similar to those that my parents have told me they went through when I was diagnosed with PKU. Unfortunately, they didn’t have the internet to help them and they didn’t have the support (at first) that you have from a clinic. There will definitely be struggles in time, but soon, dealing with the PKU diet/lifestyle will be second nature for both you and your son. I have always been on the diet, and would like to reassure you that everything will be okay! If you ever have any questions, please feel free to contact me. I’d love to help!

  2. Registered: Apr 24, 2009

    Posts: 0

    Cornwall, New York

    Hi Tiffany. Congrats on your son! He is a little cutie. My name is Katie, and I am 25. I was born with PKU. I have met many parents who are in the same boat you are in right now — just finding out your child has PKU and having to learn what it is. Learning about PKU can be stressful, scary, and overwhelming, but PKU is completely treatable. I am happy you found this site because it will help you realize there are many successful PKU patients out there. If you need anything, please do not hesitate to e-mail me…katiemag16@aol.com. Also, I see you are from Melbourne. There are a few adults with PKU on here from Australia.

  3. Registered: Jul 25, 2010

    Posts: 0

    Melbourne, INTERNATIONAL

    Thanks so much for your responses it is nice to know we aren’t alone and I think Katie and Kristi you are amazing and so positive. I hope one day I can help an overwhelmed parent dealing with all the feelings that I am going through at the moment and being able to tell them it will all be ok!!

  4. Registered: Apr 13, 2010

    Posts: 0

    plant city, Florida

    hi Tiffany! my name is Tiffany as well and my 6mth old baby boy,Maverick, was diagnosed at 11 days old…i completley understand and remember the feelings u are going thru, my main one being, is he gonna be ok and be healthy, being fearful that i may do something wrong and hurt him. I promise hes gonna be fine, having an older son without it we were completley new to this as well. Maverick is doing extreamly well, hes sitting up,trying to crawl already, doing somethings babys his age arnt supposed to be doing,so i know hes well! Our biggest problem was the specialist and nutritionist we were sent to we absolutly didnt like, they had no clue what they were doing…. we found the most amazing nutritionsit and specialist acctually from someone on this wesite…at St.Josephs Hospital in Tampa,FL….i know u dont live here but for anyone else looking they are amazing….You will have to start taking his blood levels your self witch sounds alot worse than it is….also start measuring his formula out on a gram food scale…also not as bad as it sounds…Maverick gets to start eating baby foods this week and i am SOOO excited!!!!! Hes such a piggy…born at 10lbs 4ozs…he weights 21lbs now..lol..he LOVES to eat witch is kinda scary..lol…I hated thinking that he will have to eat differently…but as a family we decided to eat a few times a week whatever Maverick was eating so that he didnt feel so different…its gonna be a long road for us, we know that, but theres absolutly nothing i wouldnt do for him… Maverick is so special to me…i love my oldest son dont get me wrong..i know this is gonna sound bad…but theres just this incredable bond i have with Maverick because he counts on me to keep him healthy! Hes my gods sent gift! My husbands uncle has PKU as well…we had no idea until Maverick was diagnosed… hes in his 50s and doing pretty well… hes been off diet for years now..he has consetration issues and migraines..we are working on getting him back on diet! if you would like to talk i am here…if u would like my phone number to text back and forth about things u might have ?’s about feel free to ask! hes gonna be PERFECT!!! Congrats on the boy!! FInally lol Also my email is tdeese23@yahoo.com u can email me anytime:)

  5. Registered: Apr 24, 2009

    Posts: 0

    Cornwall, New York

    Yes, I do agree that having a good clinic is key. When I was born 25 years ago, I traveled 3 and a half hours to my clinic. :)

  6. Registered: Apr 13, 2010

    Posts: 0

    plant city, Florida

    wow thats a long way…we are fortunate enough to be only 30mins from his clinc

  7. Registered: Jul 16, 2008

    Posts: 0

    , Minnesota

    Hi Tiffany,

    I am the mother to a wonderful 3 year old boy with PKU. I remember very well what those first few weeks were like when I found out my son had PKU. I know how scared you are, I was there. I can honestly tell you that, over time, it will become something that exists in the background. I don’t even think about it anymore, except to count what he has eaten at meal time. He has developed completely normal and is healthy and happy!

    During those first couple months all I wanted was to know that my son was going to be ok. I promise you, your son will be ok! Learn all that you can, follow the diet and before you know it, 3 years will have gone by and you won’t even think about the fact that your son eats something different!

    The most stress comes from not knowing, use these message boards as much as you can for the first year, it’s the hardest. You are going to be learning so much about what foods he can eat, how much phe he can tolerate and how to make that into a diet that works. Use these boards, talk to other mom’s and get their advice-it is so valuable. You are on the right track and everything is going to work out. If you ever need to talk, need advice or have a question, feel free to email me at sarah.lenoue@capella.edu.

    Good luck!
    Sarah

  8. Registered: Jul 25, 2010

    Posts: 0

    Melbourne, INTERNATIONAL

    Thanks so much everyone for the messages I am feeling much more reassured that everything will be ok and Jesse (that’s my son’s name) will grow up to be a happy and healthy boy.

  9. Registered: Sep 12, 2006

    Posts: 0

    Franklin, Wisconsin

    I have to agree with everything that Kristi, Katie, and Sarah have said. Your little guy will be just fine, and years from now handling his PKU will become second nature. To some extent PKU will always be apart of Jesse’s life, but as he grows up and starts walking, talking, reading, writing, and making you smile PKU will fade into the background.

    Nineteen years ago when I was diagnosed with PKU my parents had all of the fears and concerns you are dealing with right now. Today I am a happy, healthy college student studying nursing and working in a child care center. PKU has never stopped me from doing something that I love, and I am not about ready to let it start ;).

    Use this website! It is a great resource for everyone and anyone living with PKU. Please feel free to message me hear or email me at completeangel@ameritech.net if there is anything I can do to help.

    ~Breanna 19 CPKU 

  10. Registered: Apr 24, 2009

    Posts: 0

    Cornwall, New York

    Yes, it is a bit of a way, however proper treatment is so important that distance didn’t matter at the time.

  11. Registered: Apr 13, 2010

    Posts: 0

    plant city, Florida

    u are sop right katie! its so important i would have traveled out of state if i had to

  12. Registered: Jul 29, 2010

    Posts: 0

    London, INTERNATIONAL

    Don’t worry, you have nothing to worry about! it must be daunting at first, but your son will hopefully grow up to be a great man just like any other boy. PKU is something that slowly fades into the background, even for him, he might forget at times……it will just become a part of him and part of a daily routine….he may have his difficult moments like when going out with friends to eat or even at high school, but you work your way through it and believe you me it’ll make him a stronger person…..
    i am 22 and came off my diet at 18, im still doing well and my life’s going well so it does all pay off!

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