Recent content by hlyterra

There is a new doctor at the clinic that we met last month. He took the time to explain, in detail, to my son the importance of the medication and why they need to be taken in the order prescribed. Overall I felt much better at the end of the appointment. But Boston has been in the back of...

I have not. But I will bring it up at his next appointment. He is doing the 2800mg daily dose of ibuprofen instead of the azithromycin 3 days a week. So far so good with that. Thank you

My son was pancreatic sufficient until 14. I was told the Kalydeco wasn't for him. When I pushed the issue, I was told it wasn't for his mutation. Is this something I should find out more about? Thank you for your response.

That's great to know that it is a slower progression mutation. He just turned 16 in December and has been pretty healthy. I wish he'd do his treatments twice a day more regularly but we're getting there. His baseline lung function is 110%. A vegetarian and eats a lot soy. He gained 10 pounds...

I'm new here. Been reading posts for awhile but honestly was a little nervous to post considering some of the comments I've read. I'm hoping for support as I don't have any and don't feel as though our CF Clinic has helped much in the way of that. Anyway, my son, dx at 8 is now 15, has...

Thank you all so much for your words, thoughts and best wishes. It's bitter-sweet to know that I'm not alone. I wouldn't wish this on anyone. Tomorrow we have our first appointment. I'm glad one of you stated that it would be several hours. I know they plan on doing more blood work. He's...

Thank you all so much for your words, thoughts and best wishes. It's bitter-sweet to know that I'm not alone. I wouldn't wish this on anyone. Tomorrow we have our first appointment. I'm glad one of you stated that it would be several hours. I know they plan on doing more blood work. He's...

Thank you all so much for your words, thoughts and best wishes. It's bitter-sweet to know that I'm not alone. I wouldn't wish this on anyone. Tomorrow we have our first appointment. I'm glad one of you stated that it would be several hours. I know they plan on doing more blood work. He's...

Thank you all so much for your words, thoughts and best wishes. It's bitter-sweet to know that I'm not alone. I wouldn't wish this on anyone. Tomorrow we have our first appointment. I'm glad one of you stated that it would be several hours. I know they plan on doing more blood work. He's...

Thank you all so much for your words, thoughts and best wishes. It's bitter-sweet to know that I'm not alone. I wouldn't wish this on anyone. Tomorrow we have our first appointment. I'm glad one of you stated that it would be several hours. I know they plan on doing more blood work. He's...

Thank you all so much for your words, thoughts and best wishes. It's bitter-sweet to know that I'm not alone. I wouldn't wish this on anyone. Tomorrow we have our first appointment. I'm glad one of you stated that it would be several hours. I know they plan on doing more blood work. He's...

I am a divorsed mother of 2 boys. My oldest son, who is 9 was just diagnosed with CF. I have been trying, since he was 2, to find the reason why he is always sick with this awful cough and runny nose. Well, I never expected this. I just found out Friday only hours after the sweat test...

I am a divorsed mother of 2 boys. My oldest son, who is 9 was just diagnosed with CF. I have been trying, since he was 2, to find the reason why he is always sick with this awful cough and runny nose. Well, I never expected this. I just found out Friday only hours after the sweat test...

I am a divorsed mother of 2 boys. My oldest son, who is 9 was just diagnosed with CF. I have been trying, since he was 2, to find the reason why he is always sick with this awful cough and runny nose. Well, I never expected this. I just found out Friday only hours after the sweat test...

I am a divorsed mother of 2 boys. My oldest son, who is 9 was just diagnosed with CF. I have been trying, since he was 2, to find the reason why he is always sick with this awful cough and runny nose. Well, I never expected this. I just found out Friday only hours after the sweat test...