Baby's PKU tests results - slightly elevated

[hapahaolegirl]

I didn't know where to post this but I needed to get it out. I hope it's OK that I post this here...
Our son's Ped. just called and told me that our son has tested positive for PKU, his results were slightly elevated. We were directed to a specialist in PKU who we will see on Wednesday to have our son tested to confirm that he indeed has PKU. I was told the results could be a false positive but after some research false positives seem rare. I was told I would most likely not be able to breastfeed which alone is devastating for me. I cannot stop crying and I cannot believe this is happening to my family. My DH keeps telling me not to worry until after we know if he has PKU or not but I cannot help but be devastated right now. We were told we won't get Wednesday's tests results back for about a week. I wish I could be as calm as my DH but I'm just so emotional over this.

[caedmyn]

I'm sorry to hear about your baby's test results. I just wanted to put in a word of encouragement--from what I have read, you CAN BF, you will just have to follow a diet low in phenalalines (I'm sure I totally spelled that wrong).

[4imprints]

I just wanted to give you a hug. I have no idea about BFing or not but I have been through the experience of finding out that your newborn has health concerns. It is devestating. All I ever wanted was for someone else to freak out with me but my DH was completley nonchalant about it. Made me feel like a freak. Hopefully this week will pass quickly.

[BookGoddess]

I hope you get a definitive answer soon. I haven't dealt with PKU but I know how scary it is to face the possibility of a sick child.

[maranapanda]

Hugs to you mama. I wish I could offer more words of support.

[didkisa]

When was the first test taken? It still could be a false positive...my thoughts are with you. Is there a PKU thread somewhere on this forum that you could join? I know they'd be able to advise you better on what dietary restrictions you would need to heed, as well as offer support from those who've "been there."

[hapahaolegirl]

Originally Posted by didkisa

When was the first test taken? It still could be a false positive...my thoughts are with you. Is there a PKU thread somewhere on this forum that you could join? I know they'd be able to advise you better on what dietary restrictions you would need to heed, as well as offer support from those who've "been there."

His blood was taken at about 48 hours old so I've read false positive rates at that point are low.
I did a search on this board for pku but it found no results.
I know I really shouldn't be so upset right now because he could be fine but the thought that my baby isn't healthy and normal makes me incredibly upset. Plus he's jaundice and spits up bile which are other issues which are upsetting me.

[lunadoula]

Hugs to you mama. I did find some links, including this one: http://www.pkunews.org/diet/tipsBaby.htm which includes a person to contact about getting on a listserv. It definately sounds like you can still BF if your little one has PKU. I can only imagine how upsetting this news must be for you and your family. You are all in my thoughts.

[Wild Flowers]

First, s
Second, because I freak out about these things also...
http://www.lalecheleague.org/NB/NBSepOct98p153.html
a mom who did at least partically breastfeed her baby with pku
http://www.drgreene.com/21_691.html
something that says this is a screening test, and while not really false postitives, there are instances where they just want to retest to make sure

So I hope that it all turns out for you. I will be thinking of your family and hoping the best for you

[avaylee]

Just sending you more love and light and lots of hugs!

[sparkprincess]

That has to be scary! I'll be praying that it turns out to be nothing.

[seeing_stars]

Thinking of your family right now. A little girl I babysit has PKU and is doing wonderfully, though I hope that your family is spared that stress. Keep us updated!

[Yo Becca]

You and your baby are in our thoughts. I hope the second test shows there's no reason to worry. Hugs mama.

[Mamma Mia]

I remember a birth professional in my life when my dd was born telling me that if they squeeze the heel vs. milking it, it can affect the results. There may still be a chance it is a false positive, but if it is indeed PKU we are here to support you and google our hearts out to find the info you need. I know it is possible to BF with PKU but if in your case it isn't, there are so many ways to meet the needs of your baby. Big hugs to you!!!!

[mwherbs]

False positive is the most COMMON result-- and the first tests are just screening tests-
here is an excellent article at the Family Practice Doc's- web site=== a quote from the body of that article ---
"False-Positive Results
Although initial PKU screening demonstrates positive results in 1 percent of infants, there is only a 10 percent chance that an infant with an initial positive result has the disorder (false-positive rate of 90 percent).6 A repeat test must be performed if the initial test is positive. False-negative results are rare. Infants should be given a normal diet until a definitive diagnosis is made."


http://www.aafp.org/afp/991001ap/1462.html

[hapahaolegirl]

We just received his test results. He has PKU.

[Amila]

Oh mama, I am so sorry. Try to think on the bright side- I don't know too much about PKU, but my limited knowledge tells me that these things resolve amazingly with early intervention, and thank goodness you caught it now. You will be able to prevent your little guy from having serious complications. You will get through this

[Wild Flowers]

we need a bigger hug smilie on here. because that little one just isn't enough sometimes
I have looked, there are support groups out there. http://www.pkunews.org/support/groups.htm i would try and see if you can contact a laleche league leader who might be able to help you. this has to be hard. Please look into the support groups, there is no reason to have to go through this alone. and know that we are here for you also.

[Astromom]

Originally Posted by hapahaolegirl

We just received his test results. He has PKU.

Oh no -- I am so sorry.

One of my very good friends has a one-year old with PKU and she has breastfed her, so it's definitely an option that isn't necessarily ruled out for you.

I am so sorry mama.

[mwherbs]

I am sorry -----