New mother

New mother

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New mother

December 4, 2009 in Uncategorized

My name is Rachel Wynne, and my son, Dylan Wynne has been diagnosed with PKU. He is 8 and a half weeks old and is the most precious little baby! He was diagnosed with PKU at 7 days old and started the formula right away. We were able to get his levels down within the first month and they have been staying between the recommended 2-6 range. The last result came in and his levels were 11.2. The dr and dietician tell me not to worry and that we will get them back down, but I am a nervous wreck. I am just so worried about him! Does anyone have any advice about the levels? Is it normal for them to go up sometimes?

12 Reviews of New mother

  1. Registered: Feb 26, 2007

    Posts: 0

    Chicago, Illinois

    He will be ok. I actually found some of my diet records from when I was little and there were a few periods of time where I had high levels. A few days later I would test & they would be back to normal. Just keep working at it. The doctors may decide to change the amount of his formula or something, but he will be just fine. (if he’s been sick, any kind of sickness or cold can raise levels too. The reason, from what I understand, is when a person with PKU gets sick, their body starts breaking down it’s own proteins to fight the illness–including phenylalanine).

  2. Registered: Sep 12, 2006

    Posts: 0

    Franklin, Wisconsin

    Congratulations on your new baby boy! He is absolutely adorable.

    It is completely normal for phe levels to fluctuate. I am sure all of the PKU adults here will agree that we have all had our share of high phe levels, and we are doing great today. From my experience doctors are more worried about long term high phe levels (high phe levels that last months) rather than the occasional high phe levels. Have your sons phe levels tested in a few days, and see if they have come down. Keep in mind that sickness, teething, growth spurts, etc all have an effect on phe levels. In the end your sons doctor may need to adjust the amount of phe or formula he is consuming in order to bring his levels down. The PKU diet is a lot of guess and check. By this I mean that doctors do not automatically know how much phe an individual who has PKU will be able to consume. Blood levels help doctors to guess how much phe should be increased or decreased in the diet. High blood levels give the doctor a sign that phe intake may need to be decreased, and low levels may indicate that phe intake needs to be increased. It’s all apart of the PKU diet. Your son will be just fine! Please let me know if there is anything else I can help you with! ~ Breanna 18 CPKU

  3. Registered: Aug 12, 2006

    Posts: 0

    Orlando, Florida

    Congratulations on your beautiful baby boy! I agree completely with what BreaMarie said…. it is very common for levels to fluctuate and not to worry he will be fine. You are blessed that he was tested, diagnosed and put on diet right away! My older brother (who is now 30) was misdiagnosed and not put on diet until he was about a year and a half old, when I was born with PKU and Dr.s thought maybe that could be what he had as well. Back then Dr.’s had no clue what kind of effect that would have on my brother long term and told my parents that he probably would be mentally delayed and not be able to graduate high school. Prior to being put on diet he was very delayed with his motor and verbal skills. He was unable to do much at all, but once put on diet (even though not always in the “perfect range of 2-6) his motor and verbal skills improved drastically. My brother did graduate high school as an honor roll student and graduated college as well… I am telling you this so you will feel confident that your son will do great and that fluctuations in blood levels will happen throughout the years, my levels have fluctuated as well and I am doing great…. met all childhood milestones appropriately, graduated high school and college and am now a nurse, pregnant with twins on the way! So, try not to worry too much just educate yourself as much as you can with PKU info and you will feel much better! Best of luck and feel free to contact me with any further questions or concerns!

  4. Registered: May 1, 2009

    Posts: 0

    Lee, Massachusetts

    i know how you feel my son is 7 months and the first few months I could not even answer when the dietitian called to tell me the levels because I was so afraid they would be high and I would just burst into tears. Sometimes they were high, but they really only have brain damage when there levels are high for a while I think my son is developing very nicely with no delay at all. he is small but my 5 year old is small as well as does not have PKU, When he was high then he would be too low, he has had up and downs and we are still checkin his levels every week. it’s hard I am not gonna lie but i think it does get easier. I have alot of faith it God and i think that is really what pulls me through…let me know if you need someone to talk to..

  5. Registered: Apr 24, 2009

    Posts: 0

    Cornwall, New York

    Congrats on your new baby! I think everyone below has answered your question for you very well. Most importantly, just remember your baby will be okay!

  6. Registered: Nov 12, 2009

    Posts: 0

    , Georgia

    Thank you all so much for your responses! They made me feel much better! We did another blood test yesterday, but won’t get the results until Friday. The dietician did change his formula, so I am praying that his levels will be back down. Also, poor little Dylan has to get his first shots today, so I’m hoping he won’t run any fever, b/c I’ve read that will effect his levels as well. Thanks again everyone, and I’m sure I will be needing more advice soon!

  7. Registered: Dec 2, 2009

    Posts: 0

    Phelan, California

    First Congrats on your handsome baby boy! PKU is easy to handle and you will have the upper hand because he is starting on it so young which helps so much! Like the others have said he will be ok….I am 24 and have lived a “normal” life I have done everything my two sisters without PKU have done the only differnce is that I eat diffrent. The one things my parents always told each other when I was younger was that they were not going to let this stop me from having a normal life and you know what thanks to them it hasnt. Your son will grow to be a healthy happy strong young man!

  8. Registered: Nov 12, 2009

    Posts: 0

    , Georgia

    Just wanted to let everyone know that Dylan’s levels are back down to 5.5! I was hoping they would be lower than that, but I am just thankful they are down. I know that the levels are going to fluctuate some, but I just get so worried when they are high. Thanks everyone for your support!

  9. Registered: Nov 12, 2009

    Posts: 0

    , Georgia

    Dylan’s levels are now down to 3.2!!! Thank God! Merry Christmas to everyone!

  10. Registered: Feb 26, 2007

    Posts: 0

    Chicago, Illinois

    So glad to hear it! I’m sure you’re doing a great job…he’s such a cutie, too…i hope you post more pics of him!

  11. Registered: Apr 24, 2009

    Posts: 0

    Cornwall, New York

    Yay good job to you!!! Enjoy your Christmas :)

  12. Registered: Nov 12, 2009

    Posts: 0

    , Georgia

    I just got Dylan’s results from last week, and now his levels are only .8. Now, they are too low!! His dietician increased the amount of phe in his diet and hopes that his levels will move into the safe range of 2-6. She also assured me that there is nothing to worry about unless they stay low for a prolonged amount of time. Any advice?

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