PKU.com Community Discussion Forum That’s PKU life! Beyound Frustrated….. Reply To: Beyound Frustrated…..

#8124
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Tracie_PKU
Member

Hi everyone, nMy name is Tracie,and i have PKU.I have a healthy 11 year old girl. nMaybe i can give you some words of encouragement.
I am classified as borderline pku,which means my body can tollerate some protein,but the Drs. don’t know how much or what effects it would have on my body.
If your child has been diagnosed pku of anykind do not take them off of formula even if levels drop.Keep your Drs. informed of the fluctuation. nMy parents took me off diet when i was 11 years old.I am now 40yrs(OUCH)lol.
I started back on diet when i wanted a child. nThen took myself off again,and paid a price for mentally. nFor an infant remember there brain is still growing so keep the baby on diet(Formula).
If you don’t it can cause learning problems as well as brain. nUnfortunantly we (PKUers) have to inform all other Drs. not our PKU Dr.
For our other patients not infant,and can swallow pills look into Kuvan. nThat is what i currently take i only have to take 4 pills aday,and no formula.
I would say get in contact with your dietition. nHe or she can recommend other sources of besides formula to take.IE: Kuvan,flavored cold drinks packs,and even chocolate bars. nAll have what our body needs to keep nus healthy.There’s even more out there.Don’t give up. nHow to deal with the friend problem.Oh my gosh
where i live they hunt there food still.I am the only person in this entire area who has PKU.(Thats always fun)LOL nSo i tell them i am allergic to ALL protein. nThats just the easy way of puting. nGet you r children use to eating fruits and veggies you’ll be surprised that they will actually turn down other offers. nAlso Loma Linda Foods in California has all supplimental food there.Forexample cheese,pasta,and even bread.Once again get the kids started early,and they will know no different.
I hope i was able to help in some way. nHang in there you both are doing a wonderful job.Remember only a MOM knows how to take care of there own children the best way. nTell your friends to look PKU up on the PC,and become knowledgable before saying some silly.
I live by KNOWLEDGABLE IS POWER……
Your doing a great job.Babys didn’t come with instructions.Even when the good Lord made him or her extra special….(PKU)
I’m here for both of you. nTracie-PKU

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