Search:

I would make her leave ASAP!!!!

Hi my daughter is 11 years old and she had been having a really hard time over the past several months. She was hospitalized 2 times in 2 months. She is staying home from school throughout cold and...

Hi my twin boys (both cfers) are supposed to be going on a class trip to Howe Cavern in Upstate New York. The caves are about 100 feet underground. I called today inquiring about the air quality,...

Hi all I made a short video of my kids. I am sure all you can relate. We are participating in freezing for cystic fibrosis on April 11. Check out the video https://m.youtube.com/watch?v=lKmZiFEVIsk

Sasha my kids are in the same boat as well. They have one copy df508 and a nonsense mutation which no one else has py849x. We are hopeful.

Get a boon spoon. It is a squeezable/squirt spoon. You can put any purée food in it. It was great for giving enzymes. Especially while traveling.

I wonder how the new card work as well. We are going to disney in November. The last time we went to Disney, the cf clinic wrote us letters. One was for the park pass and one for the airlines. The...

I definitely heard about it. I am so worried for my 3 cfers .
Has anyone contacted their cf centers ?

Just wondering if people with one copy df508 would benefit as well

Hi I feel for you. I have twin boys who have cf they are now 4 1/2 and a 6 year old daughter with cf. I am going to be honest it is a tough road. My boys had a lot of issues when they were first...

No asthma, but the twins are getting admitted for a tune up on Wednesday

I was wondering if exposure to extreme cold temperatures is bad for cf'ers. We are have a bit of a cold blast here in New York. My kids want to go out and play. Dh says it isn't a good idea. Any...

I am also interested to see how everyone did with trial. Please let us know.



Gina
Mom to Sophia 4 w/cf, Peter & Gavin 3 w/cf (DF508 & PY849X)

We are in the same boat my daughter is 4 is starting full day kindergarten in September. I am going to meet with school nurse in a few weeks. My husband and I are nervous. My husband wants me to home...

We are in the same boat my daughter is 4 is starting full day kindergarten in September. I am going to meet with school nurse in a few weeks. My husband and I are nervous. My husband wants me to home...

Is it true that cfers who grow b. Cepacia are really discouraged from attending fund raisers?



Gina
Mom to Sophia 4 w/cf, Peter & Gavin 2 w/cf, df508 & py849x

Is it true that cfers who grow b. Cepacia are really discouraged from attending fund raisers?



Gina
Mom to Sophia 4 w/cf, Peter & Gavin 2 w/cf, df508 & py849x

This happened tO my dd from her last picc. She got an infection and about 3 months later she developed a hive from it. Three mOnths after that it happened again. To jessy funny you she bring up that...

This happened tO my dd from her last picc. She got an infection and about 3 months later she developed a hive from it. Three mOnths after that it happened again. To jessy funny you she bring up that...

Our insurance pays about 4,000 for a three month supply. Thank goodness for insurance.



Gina
Mom to Sophia 4 w/cf, Peter and Gavin 2 w/cf df508 & py849x

Our insurance pays about 4,000 for a three month supply. Thank goodness for insurance.



Gina
Mom to Sophia 4 w/cf, Peter and Gavin 2 w/cf df508 & py849x

What about having unlimited use of the bathroom? Just wondering... Next year I will be going through the same when Sophia starts kindergarten.
<br />
<br />
<br />Gina
<br />Mom to Sophia 3...

What about having unlimited use of the bathroom? Just wondering... Next year I will be going through the same when Sophia starts kindergarten.


Gina
Mom to Sophia 3 w/cf, Peter & Gavin 2 w/cf....

What about having unlimited use of the bathroom? Just wondering... Next year I will be going through the same when Sophia starts kindergarten.


Gina
Mom to Sophia 3 w/cf, Peter & Gavin 2 w/cf....

Sorry about not finishing. Just wondering if anyone else has this issue. My daughter can go a long time without coughing. Lately I have been notice that she will have a coughing spasm while she is...