Community Discussion Forum New to new to PKU. Can anyone help answer our questions? Thanks

Viewing 9 posts - 1 through 9 (of 9 total)
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    Avatar of Colleen

    Hi all,

    Our newborn daughter is born on Nov 3rd and she is diagnosed with PKU when she was 6 days old. We have been working with docs and dieticians since she was 9 days old. Her levels have been in the safe range (120 – 360) till two weeks ago. for the past two weeks, her levels came back in between 400 to 500. We are really concerned. we know that if the phe level stays high for a long period of time, it will cause damage to her brain. Will two weeks of high levels of phe do any damage to her brain? The docs and dieticians who are working with us are great and they told me that she will be fine. but I guess I am just looking for some reassurance here.

    Sorry if i am asking dummy questions. we are trying to learn about pku as much as possible. I am so glad that this site exsits.

    btw, Happy New Year to everyone!!

    Avatar of victoria

    She will be fine for sure!!!! Patient who are Hyperphe keep levels under 600 without any intervention (treatment) and they are fine, so your daugther will be.

    Avatar of Tanya

    Agreed. Sorry for the late reply, maybe you are still popping by. Hopefully by now, all will be back on track, but small rare increases, are expected, and ok. When Jacob gets sick, heck even is teething, we see an increase in levels. Its ok :) Every lil (even thou they feel huge) are scary at this moment, it will get better, and more comfortable. I promise :) Jacob is 19 months, and I am night and day to what I was 19 months ago! haha

    Avatar of Colleen

    Hi, addamd and jake's mom,

    Thank you so much for your reply!!! Our daughter (Vivien) is 2 months and 1 week old now. We have read a lot online about PKU ever since she was diagnosed. I thought we have prepared oursevles well, but when her level went up, I am still scared :(.

    Thank you for the reassurance. Our dietician has decreased her Enfamil intake a bit last Friday and our weekly clinic visit is tomorrow. Hopefully, her level will go down to the safe range.

    Thanks !

    Avatar of Breanna

    I agree with the comments above. I have PKU, and despite having higher levels here and there I am a happy, healthy college student, on my colleges dance team, working two jobs, and helping start a local PKU organization in my area. A lot of different factors such as growth spurts, teething, sickness, increases in activity, etc can affect blood levels, so a high level here and there is nothing to worry about. Plus doctors are more concerned if phe levels are high on a long term basis rather than short term.

    By the way congrats on your new little girl!

    Breanna 20 CPKU

    Avatar of Colleen

    Hi, Breanna,

    Thanks for your reassurance. I have read tons of posts on this site and noticed that you answered a lot of questions. I just want to say as a new mom, I really appreciate what you have done for the PKU community. I wish my daughter will have a postive attitude as you do when she grows up.

    Thanks !

    Avatar of carrie

     My daughter with pku will be two next month and we've had many stressful times where illness or a growth spurt has brought the level up too high or down too low. It is stressful- but so far i've not seen any negative long term consequences. You only can do what you can do. I remind myself of this often. Being stressed about it isn't helpful for anyone- and while it is a science to keep the numbers in range- it is also an art. I  find that her being stimulated or getting more excercise or more or less sleep throws the nubmers out too sometimes! you're doing a great job and it will be ok! 

    Avatar of Julie


    I have Classical PKU.  I've been off the diet for 32 years!  I just went back on a modified diet on 11/30/11, along with drug therapy started in September 2008.  

    She should be fine, but do make sure she sticks to her diet.  I was taken off when I was 7.  I know she's young, but had I not had that burger or meatloaf, I would've never missed it.  Converting back was not as difficult as it sounds, if you keep the frame of mind that it's needed for a healthy life.

    Also, had she been sick?  I know from experience that a cold, flu, or infection could cause a spike in Phe levels.  It's happened to me many times.

    You can add me to your friend list.  If you have questions at any time, I'd be glad to help.


    Avatar of firstname

      Scubalele  – I just wanted to say Hi and that my daughter was born Dec 1/11 – she also has HyperPHE and so far her levels are with in the 'safe' range – her highest has been 172 – however, we have to get monthly blood work done to ensure she stays below 360.  Each month I am a basket case waiting for the # to come in.  And each month I dread taking her to get blood as it seems to be a chore to hit her vein with it being so small.  

    Is your daughter teething?  They told me that teething could cause a spike in the levels.  Since our daughters are the same age, I thought it would be good to introduce myself.  Perhaps we could go through this journey together.  I'm dreading starting solid foods!

Viewing 9 posts - 1 through 9 (of 9 total)
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