Mom of Identical twin girls

Mom of Identical twin girls

Avatar of Kerri

Mom of Identical twin girls

August 16, 2009 in Uncategorized

I have twin girls that are 21/2 months and have hyper-PKU. There level have aleays been low (7.6 and 8.5) with the special formula mixed w/ regular formula the levels went down to 2.2. This is so hard for me to understand seeing that my older daughter is fine. Are my girls ever going to be able to eat normal food because their levels are so low. If you are a mother with twin girls that are having the same issues please help.

2 Reviews of Mom of Identical twin girls

  1. Registered: Apr 24, 2009

    Posts: 0

    Cornwall, New York

    Hi Kerri… Right now, children and adults with PKU have to follow a low-protein (low phe specific) diet. I am thrilled to hear there levels are down to 2.2. I know it seems very stressful right now that your children are so young and you learned they have this special diet… However, there have been several medical advances since I was born 24 years ago with PKU. Stay positive. Your twin babies may have to follow a restricted diet, however they will live a completely healthy and normal life! Just to put it in a little perspective for you… several kids are born today with food allergies… your twins are no different than any of those children… your older daughter is lucky to not have PKU, however each of your children are different and special in their own ways… stay strong… your children will be successful – as well as you will be too as their parent :)


  2. Registered: Sep 12, 2006

    Posts: 0

    Franklin, Wisconsin

    Kerri, I am sure my mother could understand how you feel. When I was born and diagnosed with PKU she already had two children that did not have PKU, so my diagnosis was a shock. That is wonderful to hear your daughter’s phe levels have come down to 2.2 mg/dl, because the recommended range for phe levels is 2-6 mg/dl. Your daughters will most likely need to be on a low protein diet just like all the others who have PKU. If they were to begin taking regular baby formula without their metabolic formula their phe levels would rise over time. Once you get the hang of the low protein diet it becomes nothing more than a small part of your daughter’s lives. A positive way of looking at this is that your little girls are going to have a very great support group: each other. As the oldest of three that have PKU I can say that having a “PKU Buddy” as my ten year old sister has always said truly helps. Please feel free to message me if there is anything I can help with! ~Breanna Hardy 18 CPKU

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