PKU.com Community Discussion Forum Parent support Looking for information on mild PKU Reply To: Looking for information on mild PKU

#9002
Avatar of Nicole
AceMommy
Member

Hi,

Congratulations on your son!  Our son, Ace, is going to be seven months old tomorrow!  They haven't come right out and said that he has mild PKU but that seems to be the case.  They say that compared to most babies his age he is able to tolerate a lot more protein, but I think our clinic likes to wait until he is eating more solid foods and less breastmilk to say for sure.  Ace had a level of 7 when he was a week old (someone on here will be able to tell us the difference in scales) our clinic uses the scale that says a safe PHE level is between a 2 and a 6.

From what I have learned so far I think that Ace having a more mild case of PKU means that he will probably be able to have any fruit and veggie he wants (rather than selecting the ones with the least protein), regular breads and pastas (rather than low protein versions), and possibly even some real milk and cheese (rather than rice milk or low protein cheese).  But my clinic said not to get too excited until we see how he handles food:)

As far as brain damage I was SO worried in the beginning when Ace would even get as high as 4 that I finally asked the clinic how high his PHE would have to be and for how long for him to suffer damage and they said he would have to be a 15 or higher for weeks (and they said that would never happen because they would come take him from me and figure out what was going on…..LOL)!

It seems so overwhelming right now and you have to work through those feelings but trust me when I say the day will come that you will be truly thankful that he only has PKU and not something worse.  And when he starts to smile and coo and giggle and roll and crawl you will forget all about brain damage.  I am here if you need anything…but I am still learning too!!!

Nikki

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