Sarah update

CagleBaby · February 2012

She started enzymes last week and it seems to really be helping. She also gained weight! She still has many appointments coming up and will continue therapy (she is still behind with milestones) but I feel like we are getting some where. We have our second visit with the CF clinic next week and we are also getting her sisters tested for cf as well.

Sinafey · February 2012

Yay! Way to go Sarah!

Sorry if I missed an update, but did you guys end up getting an official CF diagnosis?

fjaril · February 2012

WooHoo Sarah! hope things continue to progress

bluestreet · February 2012

Yay for Sarah! Do your other two girls show any signs of CF, or is it just because they are Sarah's sisters?

el_twirpo · February 2012

glad the enzymes are working! hope she continues to progress. thanks for keeping us all updated.

Abrooks · February 2012

I am so glad you all finally have some answers and are finally seeing some improvement. Big hugs and also a yay that the enzymes are helping!!!!

CagleBaby · February 2012

Sinafey:
Yay! Way to go Sarah!
Sorry if I missed an update, but did you guys end up getting an official CF diagnosis?

Right now they said she has one unknown but the genetic dr said they would consider her a cf kiddo, so we r treating her like on.

Mainer-in-Texas · February 2012

That is great news! I hope this is the start of things falling into place.

Also, I wanted to let you know (in case you didn't) that there are new drugs coming out that are AMAZING. They are specific to genotype, and the first one was just approved by the FDA, and it is close to a cure for CF - many of the people who take it do not need enzymes anymore, lose their CF cough, don't get infections, their lung functions go way up, and their sweat test numbers go way down (some people were even in the non-CF range). There are more and more drugs in the pipeline and the CF foundation hopes to have everyone with CF covered in the next 10 years. I just wanted to share this because I'm sure all of this is so overwhelming and scary, but Sarah may not have to deal with a lot of this stuff for the rest of her life.

CagleBaby · February 2012

bluestreet:
Yay for Sarah! Do your other two girls show any signs of CF, or is it just because they are Sarah's sisters?

A little of both. They need to be tested because they are sisters but their pedi does worry about how many different chest colds they have had as well as mild digestive issues in our middle dd.

august8080 · February 2012

That's so great!!!

brooke152 · February 2012

I am so, so glad that the enzymes are helping! And hooray for weight gain, that is awesome!! Thanks for keeping us updated, I think of y'all all the time. continued T&P for you and your family.