Hi, this is my first post and I wanted to say how much I appreciate this forum, especially hearing the perspectives of parents, partners, and older people wcf. (My son wcf is 2 1/2).
I have seen a fair amount of people w/the r117h-7t mutation and I'm curious what your dr's approach is for treatment. My son was diagnosed while I was pregnant after carrier screening. Currently we only do cpt, and occasionally albuterol if he has a cough. Our clinic's approach is to do cpt and treat any symptoms if/when they arise. He does culture staph, which we are not treating. Which I don't like, but I understand the reasoning.
So, I am wondering if there are other clinics that take a different view on this mutation. I don't want to give him meds he may not need, but I don't want to look back years from now and regret not being more aggressive.
Thanks,
Sara
I have seen a fair amount of people w/the r117h-7t mutation and I'm curious what your dr's approach is for treatment. My son was diagnosed while I was pregnant after carrier screening. Currently we only do cpt, and occasionally albuterol if he has a cough. Our clinic's approach is to do cpt and treat any symptoms if/when they arise. He does culture staph, which we are not treating. Which I don't like, but I understand the reasoning.
So, I am wondering if there are other clinics that take a different view on this mutation. I don't want to give him meds he may not need, but I don't want to look back years from now and regret not being more aggressive.
Thanks,
Sara