Help with getting my 20 month old to meet phe goal!

Help with getting my 20 month old to meet phe goal!

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Help with getting my 20 month old to meet phe goal!

April 7, 2011 in Uncategorized

When we found out my daughter has PKU it was frightening and I would love to say that this feeling has gone away, but it seems that at every age and stage it gets harder and harder to deal with. Her levels have always been below 4.0 (except once when she was a newborn it was 8.6), but I am making myself crazy with worrying about PKU all the time. The newest problem is getting her to actually meet her phe goal of 380. I know she is at that age where children become picky eaters and/or want to stop eating all together, but it is very hard to deal with this when she has PKU. Even a few months ago she was eating so much food that I was making a lot of low protein foods to fill her up, but now she eats so little I don't know how she is staying alive! The things she wants to eat are very low in phe (apples, carrots, etc), but now she won't eat anything to help meet her goal. He dietician has suggested putting a couple of ounces of real milk in her formula to boost her, but she refuses the formula with the milk in it. She also suggested getting her to eat things that are higher in protein such as oatmeal or a slice of real bread, but my daughter will have nothing to do with these either! I just don't know what to do. I figure most people are having trouble not going past their phe limit, but has anyone had the problem of getting their kids to reach their phe goal?

5 Reviews of Help with getting my 20 month old to meet phe goal!

  1. Registered: Feb 26, 2007

    Posts: 0

    Chicago, Illinois

    I have heard doctors suggest that you use higher phe foods to fill up toddlers. The one thing to be cautious of when doing that is it may cause her to develop a taste for foods she won’t be able to eat later on when she is taking in more calories. She may or may not develop a higher phe tolerance as she gets older, although if her levels were only 8.6 at birth she will probably be able to eat more phe later. Does she like any Cambrooke foods or low protein baked goods? Baking low pro muffins (use a real egg if she needs more phe), breads or desserts might help.  

  2. Registered: Dec 6, 2009

    Posts: 0

    Thessaloniki, INTERNATIONAL

    I Know what you mean…. My daughter is now 17 months old, and during the last 3 months it has been a struggle not only to reach her phe intake but also to make her drink her formula…. We use since the beginning regular milk mixed with formula throughout the day, but usually I have to feed her in her sleep to reach the amount of formula she needs….

  3. Registered: Sep 12, 2006

    Posts: 0

    Franklin, Wisconsin

    Have you tried using powdered milk instead of regular cows milk? There is 17 mg of phe per gram of dry milk. When I was your daughter’s age my parents had a hard time getting my daily phe intake in, and I also refused my formula if regular cows milk was added to it. I had no problem drinking the formula if powdered milk was added though. Otherwise if she likes applesauce, Hunts lemon pudding, or anything else similar to that you could try adding the powdered milk to that. I’ve personally never done this, but it’s worth a try.

    Unfortunately I think this is an issue that’s common for toddlers. It’s just the picky age. Sorry I couldn’t be more help.

  4. Registered: Oct 1, 2009

    Posts: 0

    Tucson, Arizona

    i know how it is when your child will not eat like they use to. my son gose throw that all the time! he just dont want to eat and when he dose want to eat its not enough. it makes me worried but what i do is just give him somthing higher in phe and hope that the levels are good. that all you can do. thats all i do!! hope hope and hope….

  5. Registered: Jan 12, 2010

    Posts: 0

    Turnersville, New Jersey

    oh my gosh! yes I have the same problem most days. My son is allowed 300mg a day and your right sometimes it is hard to get up the 300mg. My clinic told me goldfish, your higher ceareals like cherrios,and same as you add an ouce or so of regular milk to his formula.

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