Kalydeco and Sucralose

[Feloniousmonk]

Hello
My beautiful baby has been diagnosed with a mild case, as far as they can tell. They want to start her on Kalydeco granules. She just turned 7 months. I have been holding off, because I'm just afraid to compromise anything, when so far she is ok. It's a new drug. I know it sounds ridiculous, but with ingredients like sucralose in it, is alarming to me. I had suffered short health issues from using Splenda. There is not even a valid reason for this being in the medicine besides a sweetener. Which is just unnecessary, especially if there are way safer alternatives. It screws up your all the good gut bacteria and reeks havoc on your metabolic system. All the things a child with CF does not need. I've noticed this pattern as well with the vitamins they give, and I researched alternatives due to this issue. Is there any alternative modulators that do not carry ingredients like this? I don't want to add more damage or possible issues that CF already does well at. Why do we always just have the option of the lesser evil? Can anyone help?

 

[Ratatosk]

Unfortunately there's no such thing as a mild case of cystic fibrosis. It's a progressive, multisystem disease and without being proactive, eventually lungs, sinuses, pancreas and other organs will become affected. While not a cure the correctors such as trikafta and kalydeco will help reduce disease progression. You're concerned with gut health and metabolic systems; however, weight can be regained, lung tissue cannot. It's important to be proactive -- chest physiotherapy, vitamins, calories, prevent infections....

 

[Feloniousmonk]

I didn't mean mild technically she is considered Atypical. Regardless I understand she needs the same treatments. I want to do the modulator and someone had told me there are granules with out the yuck in them. I just wasn't sure if it would be something that wasn't for her age.

 

[Feloniousmonk]

Thank you for ur help though

 

[jimcaldwell]

Modulators have different effects on people. Some feel no side effects while others have difficult tolerating them. The main thing is to find the things that help you (Prescription drugs, supplements, therapies, etc) and be consistent, while being open minded to researching other things from time to time. The better you can slow the progression of CF, the more time you will have to utilize a newer therapy down the road.