Community Discussion Forum Parent support VERY FRUSTRATED PARENT!

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    Avatar of Sarah

    Hello all.  My name is Sarah and I am a parent of a 19 month old daughter with PKU.  I am becoming  very frustrated with feeding her and I need advice.  I am feeling very worried and depressed about this situation.  Please help!  This is a recent letter that I sent to her dietician about how I feel:

    Its Sarah.  Jacob and I talked about it and we want to start Abby on Kuvan.  I am feeling very desperate and emotional.  Abby is refusing almost all foods but Gerber fruit snacks, fruit leathers, some pasta, toll house crackers, fruit pops and jello. She won't even eat the string cheese now or puddings or most fruits! I am so extremely frustrated and worried.  I know you guys said she is healthy but I am still worried. I have to admit that I have yet to try some recipes in her PKU cook book but I get overwhelmed easily and don't have a lot of time on my hands to cook meals for her that she will just refuse.  Is this just a stage cause she is a toddler?  Do all PKU moms go through this? I am STILL trying so hard to except this about Abby.  I know I am so lucky and grateful that I have you guys at CHOP to help us and I know in my heart that she will be fine but I am scared about everything, that I have to teach her in the future and now, she just does not understand. I have started to hate cooking and I am on the verge of hating food.  I am sorry for this long emotional letter.  Do you know if there is some kind of support group I can go to about this?

     I need advice please. 

    Thank you for your time,


    Avatar of

    Try lo-pro chips! Cook lo-pro pasta, fry it, then season it with taco seasoning, Cambrooke cheese powder, cinnamon and sugar, etc. Regular pasta does get boring. Definitely take advantage of low protien recipes… most of them don't take a lot of time to make! Keep your chin up! 

    -Millie, 18, Classic PKU 

    Avatar of Breanna

    It sounds like to me that Abby is just being a typical toddler. She's going to go through phases where she refuses to eat certain foods. If you are having a difficult time getting Abby's daily phe intake in each day you could try adding regular milk or powdered milk into her formula. One ounce of regular milk is 50 mg of phe, and one gram of dry powdered milk is 17 mg of phe.

    If you are looking for support groups might help ( They have a list of support groups for PKU throughout the US. It might be helpful to contact the president of either Western or Eastern support groups depending on where you live.

    Utilize your clinic. They are there to help you, and from what I have heard Children's Hospital of Philidelphia is a great clinic.

    Breanna 18 classical PKU

    Avatar of carrie

     Good luck-and lots of hugs!! 

    I have three little girls- and the youngest recently diagnosed pku- and both of my older girls went through stages where they refused most foods- even foods that were their favorites would be refused- and so i started keeping a food diary and realized that after a week (although certainly  not every day) they would get the required nutrients they needed- and a bit part of it was control- the more they thought it bothered/flustered me the less they would eat. 

    Avatar of Grace

    I can understand what you mean. My son is 11 months and between the low pro food and and regular ones i am having a hard time getting him to eat enough food, for calorie and phe reasons. I think your daughter may be just being a toddler i know my older son who is almost 6 who does not have pku has gone a day before with hardley eating anything, and he is a skinny boy but healthy he will eat when he is hungry. enless she is loosing weight or is not growing try not to worry too much. best of luck will keep you in my prayers.

    Avatar of Janice

    Hi my name is janice and I have 3 children my only daughter is 7 and she has pku and so does my 2 year old boy.  My daughter is  a great eater but my son is not he is picky and sometimes will not eat all day, also he goes through phases where he only eats 1 thing for a few days.  I think it is just a normal part of being a toddler.  My clinic showed my how to add small amounts of powder milk to make up the phe he doesnt get with food maybe you could ask the clinic about that.   

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