moms of children with cystic fibrosis

MOST HELPFUL POSTS

Dana - posted on 08/14/2010

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hi my name is dana i have a son that has C.F and he is 14. we found out that he had C.F. when he was 2mos old

Shelley - posted on 04/25/2009

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Hi Maureen,
My name is Shelley I had two children with cf, a son and a daughter. They were both born in the 70's, back then they did not have the tech. they have today, and they were only suppose to live to the early childhood. However, my son died from none related to cf (bicycle/car) accident at the age of 13, and thank god my daughter is still alive at the age of 34, married to a wonderful guy and doing pretty good. She does have to go in for a tune up about every six months and of course all the meds she has to take. Should you have any questions or comments please feel ask.

Brandy - posted on 03/29/2009

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I have a son with CF. He is 8 years old. We made him a website....feel free to check it out. www.claytonbates.org

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Shaylon - posted on 11/17/2013

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My daughter to she's 15yrs about to be 16 just don't give up ..,much love it's hard.

Toba - posted on 06/03/2013

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Hi, my name is Toba.I have two children with suspected cf. Both of them have positive sweat test although genetic testing so far has shown only one mutation for my son and none for my daughter. Now we need to test for more mutations and see if they show up. I'm confused though, does this mean that there is a chance they don't have cf if their genetic test comes back negative? or do they have cf based on the positive sweat test results. Does anyone have any information on this? please let me know. Thanks so much.

Dana - posted on 08/20/2012

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Hi Everyone,

If your child needs special formula for CF, then check out www.star-medical.net. They are so helpful and have several different formulas in stock for children with CF. I hope that helps make such a difficult journey a little easier.

Amanda - posted on 09/29/2011

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I'm in the US. I think they're just not wanting to tell us what the mutations are. And that's what I heard was with 2 that the condition is severe. I hope that's not the case with her. I'll keep you posted. This next test takes 3 weeks to get back. And thanks for the support, it helps to talk to someone.

Ans - posted on 09/29/2011

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Are you in the US? I'm in Canada, and the results of Jesse's screening included the mutation name. I'm wondering why they didn't tell you. People with two copies of the Delta F508 gene have usually more symptoms and a more severe form of CF. Hope you find out more soon! All the best with your precious little girl!

Amanda - posted on 09/29/2011

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We were just told that she had two common mutations. So far, they haven't let us know which ones. Yea, she past her first, second, and third stool in the hospital. And her weight gain is really good. She was born weighing 8 lbs 7 oz and on her 1 month - she weighed 10 lbs 2 oz.

Ans - posted on 09/29/2011

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Did they tell you which mutations? There's only one common one (DF508), but you can have two of the same. The other ones are all rare. In Canada they test for only 40 of them through newborn screening, and otherwsie 80. In the US they can test for 1500 different mutations (Ambry Panel). Sometimes babies don't have symptoms until later on. Did she pass her first stool in the hospital? As for more children, there's a 25% chance of having another child with CF, 25% no CF, and 50% carrier. That would be a hard decision! Hugs to you!!!

Amanda - posted on 09/29/2011

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Ans Averink - I'm not sure of the latest testing. The doctor said it would be a blood test similar to the heel prick. I'm really hoping that this test will come back showing the heel prick test was wrong and she doesn't have CF. I realize that I need to get out of denial but I think every parent is, when their child has no symptoms. If she does really have CF I hope it's a mild case. I always wanted at least two children. But knowing that our next one could also have CF; I just don't know. It's so hard to look at the most precious thing in the world and think she's sick without being able to see that she's sick.

Ans - posted on 09/29/2011

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Hi Amanda, I'm sorry you're going through this. If they found two mutations it means she has CF. A sweat test on a newborn can come back normal. What further testing will they do? My son's newborn screening came back with one mutation (DF508), after a sweat test and more genetic testing they confirmed he's only a carrier.

Amanda - posted on 09/28/2011

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My daughter is 5 weeks old today and tested positive on her Newborn testing for CF - they found two common mutations. We then did a sweat test which came back completely normal. So, now the doctors are wanting to do further testing to confirm if she has CF. Has anyone else had this happen to them?

Ans - posted on 05/18/2011

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Hi, my newborn son has a positive screen for CF, with an IRT of 79.1 and one detected mutation. He has to go for a sweat chloride test next week, and more extensive genetic testing to see if he has another mutation. Anyone else out there experience the same?

Sharlene - posted on 01/05/2011

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Hi moms. I have an 18 mo old son with CF. We are entering the picky eater stage...any advice on how to sneak in more calories without overdoing the sugar?

Another question...when do the "tune-ups" typically start?

Also...any IL moms out there?

Clare - posted on 01/05/2011

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Hiya, I have a Daughter with CF, she is 12(nearly 13)- generally doing quite well :)

Lisa - posted on 08/15/2010

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I am a step momma.. of a 22 yr old son with CF,, I have only been stepmomma for 10yrs.. He has had a Double Lung Transplant TWICE.. within 3 days of each other.. He is doing well today.. Married.. There are scary times yes..

Sharon - posted on 01/31/2010

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HI MAUREEN MY NAME IS SHARON I HAVE A GRANDDAUGHTER WHICH IS A CARRIER OF CF, I DON'T KNOW MUCH ABOUT THIS SO IF YOU COULD HELP ME TO UNDERSTAND WHAT IT'S ALL ABOUT IT WOULD HELP RIGHT NOW SHE HAS BAD AN I MEAN BAD ALLERGIES TO EGGS, MILK, SOY, ALSO STOMACH PROBLEMS HARD TO FIND FOODS TO FEED HER SHE IS 18MONTHS I NEED ALL THE HELP I CAN GET THANK U IN ADVICE HAVE A BLESS DAY!!!

Alice - posted on 11/22/2009

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Hi Maureen I too have two little ones w/ CF it has been a very long journey since their dx's if you ever need to chat just start a conversation w/ me....It is nice to find others who are faced w/ this challenging disease....Alice

Sharlene - posted on 07/09/2009

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Maureen, you posted quite awhile ago, but I just joined this group. My son was diagnosed with CF through IL's new mandatory newborn screening. I'm just starting to deal with all of this... I'm here to talk, or listen if you need it.

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