I am asking for as much info as possible. My daughter was born on Nov. 18 2004 her appgar was a 8 and a 9 . not ten min. later they had her sent to special care and she was there 7 days she had a chest exray and they said she had a slight fluid in one long and had some kind of infection in her tummy so she was on iv and antibiotics for 7 days. She also was on slight oxigen but weened her off after 4 days. The New York State newborn blood screen found one mutated cell for cf so the ped. called and said she had to go for a test in Albany but said worse thing it could be was a carrier what a slap in the face after going there and them telling me it was to test her to see if she had cf or not. But the person giving my daughter the sweat test also told me don't woory I don't think she has it. Well it came out positive. Her weight is great at 9 pounds at 6weeks when she left the hospital she was 6.11. She is gaining great. the only sign she has of now her ped. says is the strong odor of poop. It isn't direah or hard just really soft with a little form to it.She has a slight caugh when she starts to cry or a caugh during the day once in a while but says itisn't nothing to worry about. Her lungs sound clear. What do I excpect in the future specialist visits... more tests, Is Albany Med a good hospital to go too. They said they are one of the bests in the nation.Hope for some good replies Thanks.
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6 week old just tested positive with sweat test.
- Thread starter anonymous
- Start date
I am sorry about your diagnosis, but you have to come to a very supportive board. The parents and patients here and wonderful and will answer any and all questions. Does your daughter taste salty when you kiss her? Years ago, that was the first sign that something was wrong for CFers. I don't know about Albany, but be sure you are taking your child to a CF Center where they know how to take special care of CF kids. It makes a HUGE difference to have someone who knows what they are doing taking care of your daughter. Let us know what's happening. Hang in there!
I too had a child diagnosed at 6 wks old, her diagnosis was also due to a state screen. She had no complications at birth or even when she came home. Our pediatritian at the time also swore that there was no way she had it and that she certainly already would have been showing signs. Yeah right. Did he ever have to eat his words. We didn't stay there very long. She is now 2 yrs old and doing wonderfully. I'm certainly no expert on the subject but I'm working on it. I would stronly recommend that you go to at least one other accredited CF Center for a comparisson. I started out at a small North Jersey center where they treated about 55 CF patients. After talking to several people we were encouraged to take a trip to the Childrens Hospital of Philadelphia where they treat over 300 CF patients. What a difference!!!! We unfortunately had to relocate due to a job change but are now also in another CF Center in Texas which is also wonderful.
Best of luck to you and your daughter.
Jennifer (mom to Kimmie 2yrs w/cf)
Best of luck to you and your daughter.
Jennifer (mom to Kimmie 2yrs w/cf)
Thank You so much for replying. We had are first visit with the CF team at Albany Med which is one of the best in nation for cf. They made me so much more confident. Right now we are just learning the ins and outs of the desease and Jan. 24 we have to go back and they are going to show us how to do the procedure of clapping her back and chest and teach us some more about cf. They did a stool sample to check to see about emz. but right now it looks great. she is gaining about an ounce a day. I am afraid because we have two other children that have to have a sweat test done. We have a boy just turning 8 and a girl turning 3 in Feb. In my heart they are ok but the question is there. Saydie is diagnosed with the most common cf cell and doing more blood work for the other cell. Thanks again. Keep me informed.
Katina
Katina
lovemygirl
New member
Our daughter was diagnosed at 8 weeks and was tested because of failure to thrive. Our ped. was sure it was a milk allergy but wanted all the tests done to be safe. In Canada there is no newborn screening for CF that I am aware of so we were lucky to get her diagnosed this young. I know it is very scary but you will get through it. Our daughter is now 4 1/2 and doing well, although her weight is still a struggle. My only advice is make sure you are at a good CF center and that you be honest with your children about what is goign on (in an age appropriate matter of course).
You have come to the right place for support.
Good luck!
You have come to the right place for support.
Good luck!
I have a 6 week old as you all know from reading above with cf and I have to be tested. I am so afraid to do it. They have always been pretty healthy except a normal cold here or there or strep throat but has never had to be hospitalized or on antibiotics for more than 7 to 10 days. Saydie don't really show any signs either except here poop is sometimes sticky looking but has gained over 2 pounds since birth. How much should I be worrying? I am going out of my mind. I think what has scared me the most is the number of people on this forum that has more than one with cf. Can you give me any advise or comments ?Thanks
Katina(mom of Saydie w/cf)
Katina(mom of Saydie w/cf)