Cystic Fibrosis Moms

This groups is for moms of children that live with Cystic Fibrosis and the other side effects of CF. Also for moms or grandma's w/CF or that help take care of a CF child. Even if you have raised your CF child you have the experience. PLEASE join. We need you.

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Scared mom of a CF daughter

3 months ago my baby girl was born, so "heathy" and perfect and three weeks after we found out she has CF. We were and still are shock especially that her dad had extensive...

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not salty "tasting"

My son possibility of having CF. he's 9 months old and has had RSV at 3 weeks, repeated bronchitis , reoccurring pneumonia, repeated upper respiratory infections, repeated sinus...

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Moms experiences with CF!

I dont know if this is the right place to post this but I need help. My son is going to Childrens hospital in 11 days. He has a awful sounding cough he has had since to months...

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R117H/5t

Hi, My son has a confirmed diagnosis of CF, but the genes that they have identified are R117H and 5T polymorphism. I am not sure how they work and what I am in store for. From...

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Not Classic CF

Hi my name is Maryanne. I have two children with "mild " forms of cystic fibrosis. I have not been able to find other children with similar conditions. Apparently most people...

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G85E

My son is six months old and has one mutation G85E and the other is unknown. We have bloodwork in at Johns Hopkins and so far they have not identified the other mutation, there...

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Toddler & enzymes

Any suggestions on how to get your toddler to swallow open-capsuled enzymes? He is 22 months and is not ready to swallow them whole so we sprinkle them in food and/or hide them...

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The Vest

Hi, I am wondering what are your experiences with the vest and did you see a huge inprovement from using it? Also did you have a hard time getting insurance to approve it? My...

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Assistance

My friend is struggling to get assistance, Social Security, for her daughter, 8 years old and has Cystic Fibrosis; any advice would be appreciated greatly.

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Dry Salt Therapy

Has anyone taken their child to a Salt Room? I understand that Dry Salt Therapy can help relieve some symptoms of CF. In New York, you can check out www.BreatheEasyUSA.com for...

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new here

My name is Corrine and my 11 year old son has CF. He was diagnosed at 6 and I had to fight for it. He was going through coughing spells all the time and the doctor kept giving...

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new here

My name is Corrine and my 11 year old son has CF. He was diagnosed at 6 and I had to fight for it. He was going through coughing spells all the time and the doctor kept giving...

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Cystics fibosis

My newborn was born with a bowel obstruction and today we found out that the blood test came back on the border of having cystic fibrosis. What are the chances she may have CF?

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Cf mom of a picky eater

Hi everyone! I'm new & this is my first post ever! :) My almost 2 year old daughter has cystic fibrosis & she has been very healthy! Fortunately, we haven't had any...

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CF Treatment Schedule for Nursing babies

I have an almost six month old with CF. She has been exclusively breastfeeding and not really on a schedule for sleep or feeding and it's driving me crazy. I normally wouldn't...

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0

Scared mom of a CF daughter

3 months ago my baby girl was born, so "heathy" and perfect and three weeks after we found out she has CF. We were and still are shock especially that her dad had extensive...

0

Scared mom of a CF daughter

3 months ago my baby girl was born, so "heathy" and perfect and three weeks after we found out she has CF. We were and still are shock especially that her dad had extensive...

0

not salty "tasting"

My son possibility of having CF. he's 9 months old and has had RSV at 3 weeks, repeated bronchitis , reoccurring pneumonia, repeated upper respiratory infections, repeated sinus...

0

not salty "tasting"

My son possibility of having CF. he's 9 months old and has had RSV at 3 weeks, repeated bronchitis , reoccurring pneumonia, repeated upper respiratory infections, repeated sinus...

0

G85E

My son is six months old and has one mutation G85E and the other is unknown. We have bloodwork in at Johns Hopkins and so far they have not identified the other mutation, there...

0

Dry Salt Therapy

Has anyone taken their child to a Salt Room? I understand that Dry Salt Therapy can help relieve some symptoms of CF. In New York, you can check out www.BreatheEasyUSA.com for...

1

Cf mom of a picky eater

Hi everyone! I'm new & this is my first post ever! :) My almost 2 year old daughter has cystic fibrosis & she has been very healthy! Fortunately, we haven't had any...

1

Moms experiences with CF!

I dont know if this is the right place to post this but I need help. My son is going to Childrens hospital in 11 days. He has a awful sounding cough he has had since to months...

2

Toddler & enzymes

Any suggestions on how to get your toddler to swallow open-capsuled enzymes? He is 22 months and is not ready to swallow them whole so we sprinkle them in food and/or hide them...

4

Possible CF diagnosis

Hi, My name is Elizabeth and my 15 year old son just left the ENT and the Dr floored me by asking if he has cf. I told him that he was tested as a baby due to multiple...