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Well in my crazy person moment I goofed up her mutation. He said 2585delT or 2453delT. If anyone has any helpful info I am all ears.

Well very sad news! Her sweats are still above 100 :( we are so sad and confused! He also gave us her 2nd mutation, it is a class I stop mutation called 2585 delT or R785X. Our dr said that all of our wonderful results are just a coincident and says that Kalydeco is not working for her. I'm...

Murgie- I would be more than furious! That comment was rude and meant to cut you to the quick. Anyone who disrespects you or your child on purpose is horrible for lack of better words. Anyone who is disrespectful on purpose should be reported anywhere! I really hope Sam feels better soon...

I'm going to fill out after I get Abby's results back from her sweat test on Thursday. <img src="i/expressions/face-icon-small-smile.gif" border="0">

Glad you are doing so well. And I'm glad this forum is helping you. It's nice to have people to talk to about CF that actually understand. Good luck and God bless. <img src="i/expressions/face-icon-small-smile.gif" border="0">

Good luck and keep us posted <img src="i/expressions/face-icon-small-smile.gif" border="0">

Kristen...Kalydeco is amazing!! Some are calling it an almost cure! Yes my daughter is on this even though she does not have the proper mutations. You definitely need to get a hold of marcij, which I think you did on another thread. She is having amazing results and she has your mutation...

Yes Abby does go to school. I was very nervous to start her in school as well, but I wanted her to be as normal as possible and make as many friends as possible. She is a social butterfly. And she has been swimming all summer long, I swear she is part fish <img...

I totally agree with Aboveallislove! You are NOT a bad mother, you are a very good mother!! You are trying very hard to find a way to help your child. I was in your shoes for 2 years. I too trusted my doctors, who were not interested in finding what was wrong with my daughter. I think that...

Thank you so much!! I really enjoy talking with you. <img src="i/expressions/face-icon-small-smile.gif" border="0">

Yes I did talk with the Coordinator she is the one who told me that. I first asked the nurse and when she told me that's all she could find I went straight to the top. I couldn't believe it myself!!! Why would they want to go backwards in technology? I am still baffled. And I pray you are...

Hi Crystal!! We see Dr. Chris Oermann. It's nice to have someone in our area <img src="i/expressions/face-icon-small-smile.gif" border="0"> I love Texas Children's but just am in shock that they have actually back tracked in technology and am not understanding why they would want to do that...

I agree with edan, I think I would travel outside of your country to find another specialest. And if it is CF the coughing is good because that is her only way to get rid of the mucus in her lungs. My daughter only coughs when she is having chest congestion or sinus drainage. If she has...

So..I called Texas Children's to get Abby's sweat test numbers mailed to me so I would have something to compare to and was HUGELY disappointed in what they told me!!! August of 2007 at Seaton Hospital they measured her sweat and got an 89. Then in Dec of 2007 TX Childrens did another sweat test...

Just curious if you had thought about trying Kalydeco or getting in a trial since you have the R117?

We always start out at the hospital and the second her dosages are right...straight home we go, because when you are at home you get more rest in your own bed without 20 people interrupting what little sleep you do get, you eat more because you have your comfort foods(not hospital food) in front...

I see that you have G551D and was just wondering if you are on Kalydeco? I have heard that some are getting on Kalydeco and getting to slowly wean off of a few meds. That might help ease a little time off of your treatments. As far as reordering we use CF Services Pharmacy, which is...

There is so very many amazing drugs in the pipeline right now!! To me optimism is the best way to approach it for you and your child. I try to stay positive and keep on top of any new CF developments out there. Hopefully 809 and or 661 will be out in 4 to 5 years and make everything worlds...

I'm not sure, I ordered the DVD off line. I'm sure that you could google it.

Oh missT, I don't know if you have not caught the amazing news that Kalydeco is helping people with your mutation!! There is one girl on here named marcij that it has helped more than the people with G551D at her clinic!! I totally understand your point of view, but they are researching your...