One of the doctors after I had Jaden called and said he was pretty sure she has CF and wants her tested, so we did twice, this was at 2 weeks old and didn't get enough sweat. So I go to the peds for her checkup and ask the other doc about it and he said she's growing and seems to have no problems. Wait till she's a bit older to get the test done again. I have not noitced
salty skin or anything else. I have read everything I could possibly read about CF. The only thing is her poop is oily sometimes not all the times. At her 6 month appt she was 14lbs and 25 inches long. Does their skin taste salty no matter what. I kiss her all the time and never is salty. My husband was licking her face, LOL when we did some reaserch on it. Thankfully he quit that ,LOL

My heart goes out to all who has CF or knows someone who does.

Plus we have no history except I found out my cousin's second daughter has it. So we have no idea if he got it from his mom's side or his dad's.

if you have no history of cf .. your baby can have cf.. you and your husband both would have to be carriers for your baby to have it... and if you both were there would only be a 25% chance of it haveing it....so i don't thing it is cf... well i hope this helps a little...

Do you know WHY the first doctor thought she had CF- was it from newborn screening?? I would definately not disregard this info-- its always better to be safe than sorry.

Sweat tests are difficult to perform on newborns- you can opt to do a genetic blood test or repeat the sweat test now- she's old & big enough.

We had absolutely NO family history of CF and our 2yr old son has it- not a cousin, nothing. A doctor cannot look at a baby, or her growth chart and know whether or not CF is present.

I hope & pray that its not CF. But my son's went undiagnosed for quite some time and I've become a real pitbull about diagnosis. Please look into the repeat sweat test asap.

Thanks for the replys. It was the newborn screening test that was done. I took her to the docs today cause we've all been sick and my son had a ear infection and so does she now :(. I talked to another doc and she feels it's better to be safe then sorry as well. So I am calling Monday to get her a new sweat test done. Thanks again! :)

:angel:
My prayers are with you--

Tell the doctors you want a genetic test done. According to my doctor and she is a CF Specialist a sweat test can miss about 2% of CF cases. My daughter was tested and didn't have CF. Also have them test for any known polymorphisms. Some polymorphisms can cause you to have some of the symptoms of CF and not actually have CF. It turned out that this was the case in my daughter. She tested negative for CF but positive for M470V.

Ok what is polymorphisms? I really appreciate all the help. Thank you.

Okay, here is a mom's version of the definition of a polymorphism. I'm know the doctors would definately have a more scientific definition. I'm not sure I can tell you exactly what it is but in the case of M470V polymorphism I can tell you what it means to our daughter.

A polymorphism is a alteration of a gene and they can be found in both CF patients and non-CF patients. A child gets two copies of a gene. One from Mom and the other from Dad. In our case from me she got an altered gene that had the polymorphism M470V and from her dad she got the same thing. So she has two genes with the polymorphism M470V.

When our doctor said she was ordering genetic testing for CF and any known polymorphisms she told me that if she had to pick one of the two she would pick the polymorphism because it was the lesser of the two diagnosis.

I have to say talking to the doctor about M470V was very technical so I asked her "So what your saying is M470V can look like cystic fibrosis and act like cystic fibrosis but it really is not CF right?" and she said that was right. See you can have the M470V and still have CF and it makes it worse. You can have the M470V and not have CF but you still have the chronic sinusitis. In our case the chronic sinus problems keep triggering my daughters asthma.

We are trying hard to keep the sinus problems under control and this keeps the asthma under control for the most part.

Our doctor says that M470V is not really a disease it is more of an explanation of why Karly is having the sinus problems that she does. See children with the M470V on a gene are more likely to have sinus infections than the average normal child.

I hope this helps. It can't hurt to ask your doctor. By the way my pediatrician and ENT throat doctor didn't have a clue what M470V was. It took our pulmonary specialist who is also a CF specialist to figure this out so if you don't get any results from your pediatrician or ENT, start asking about a specialist.

In any event -- even if it's not CF, please pursue a specialist and get answers. A friend of mine lost his teenage daughter last year from an undiagnosed lung disease while waiting for a transplant. I can't help but think if the doctors would've have treated it as IF her illness was CF instead of saying, phew, it's not CF, so your child is fine.. that little girl might be alive today.

I absolutely agree with Ratatosk. Keep asking questions until someone does something. We struggle every day to keep my daughter healthy and she is treated by a CF doctor eventhough she doesn't have CF because she has some of the symptoms of CF.

Thank you all so much, you have been a great help. God Bless you all and prayers for all those with CF and kids who have it.