Community Discussion Forum Parent support Do you have to order special foods?

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

    Our baby is 16 days old so we really don’t have to worry about this for a while; but, I was wondering what the truth is about diet management. My girlfriend came in contact with another cpku child’s mother in our town, which really surprised me, who said that she doesn’t order any special foods for her daughter, just does low-protein foods from grocery store in town. Does this really work? I really don’t look forward to paying some of the prices I’ve seen, but it seems to be a low price for the health of my daughter. It doesn’t make sense with what I’m reading, either. But, I don’t know yet how it will be like. I just know how hard it is now to do daily heel sticks to her. Anyway, thank you for helping.

    Avatar of Breanna

    I know what you mean about having someone so close to you with PKU. I actually live litertally down the street from a women who is about 40 and has PKU and there is also a 18 month baby who my mom has helped alittle. I think they live about 10 minutes away from us.
    As for the food it depends where you live, I know here in Wisconsin they cover some foods like low protein pastas and formula and a few other things so we don’t have to buy to much. We just go down to childrens hospital and pick it up. I guess it also depends on how much phe your allowed, because if the women you meet has a child who is allowed alot of phe then it would be alot easier for her child to just live with things at the grocery that are low in phe. But it is possible, fruits, veggies, cereals, fruit snacks and some junk foods (depending on what it is) are usually okay. Me and my sister actually don’t eat to much low protein foods, just pastas and sandwichs and that is about it.
    Finally, about the blood tests. I wish I could say it will get easier but I can’t. I don’t know from personal experience but I know my mom still isn’t 100% happy with doing blood tests (even after 15 years!). nBreanna

    Avatar of Kristen

    Hi! just want to let you know that I am 26 years old with PKU and did not have lopro food when I was a kid. I have tried lopro foods, but prefer regular food. some children with PKU gain weight from the formula they drink and the lopro foods can do the same thing. But you should definatly buy a few things and give it a shot. If you ever have any questions please let me know.

    Avatar of Meaghan

    I don’t know about the foods, but the formula did make me gain some weight when I was little. To let you know I am now extremely healthy and “slim”. I have always taken formula and eaten special lowpro foods. Check your state laws. In New York health insurance companies HAVE to cover food and formula 100%. To help you out here’s a link which shows all existing laws… just to make sure though you might want to contact your state govt.

    Avatar of Dayna

    I live in Illinois and have began speaking with the dietician about ordering food. Currently, Illinois does not cover the food. There is a bill in congress but it has been tabled yet again. It is very frustrating but I just keep emailing my representatives about it.
    We do have an agency (DSCC)that covers food if you make under a certain amount.


    In Indiana Medicaid is required to pay for the formula, but they’re trying to get out of it!!! so the dieticain is doing what she can, and since Tanner only needs one bottle of phenex a day, a can generally lasts about a week. There is still no way to tell exactly how much phe she’ll be allowed and she’s 4 1/2 months, so there really is no answer to your question. Babies are very closely monitored (which is y u have to do so many heel sticks) because they grow so much during the first 6 months of life, then they tend to stop growing so rapidly.
    I’ve found that the smaller needles work best when you do heel sticks…are you doing them yourself? Also, if you can have someone hold the baby in an upright position, it helps the blood flow easier to the lower half of their body. Now, Tanner just sits in the corner of the couch while I do it, she usually doesn’t even cry!! But trust me, that comes with time!!!
    Good luck!!

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