Recent content by Lilliansmom

My two kids both have the S1235R mutation.

Just sent you a message.

Both of my kids have high sweat tests, yet only 1 identified mutation. Both carry a CRMS dx, but are treated as if it is CF. They both use the vest, neb hyper sal, DS is on super long courses of antibiotics, they are seen in clinic every 3 months, and are on precautions at our clinic. Their lung...

We are on the south shore of MA as well, but are right on the beach. Hope you guys are ok.

Thanks. Hill Rom called yesterday, and they are delivering them on Friday, but insurance has not approved it yet. She told me that they can always come back and get it if insurance won't cover it, but fingers are crossed that they will. Since the kids just have a CRMS dx, I am not sure.

Both of my kids carry the CRMS dx. Both have had borderline sweat tests - as high as 59, but only have 1 mutation. After years of doing nothing, they are now being treated as if they have CF. We are doing CPT, nebs, and waiting on insurance to approve the vest.

Our CF clinic put the request into insurance about a month ago. I was just wondering how long it took for most people to hear back?

Thank you everyone. We have an appointment for a second opinion next week. I will let you know what happens.

Thank you everyone. We have an appointment for a second opinion next week. I will let you know what happens.

Thank you everyone. We have an appointment for a second opinion next week. I will let you know what happens.

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>LouLou</b></i> It's not about diagnosis it's about keeping our kids healthy. Has your children been with this care center through this previous winter with infections that turned to pneumonia? My son has S1235R and G551D. He sees Dr...

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>LouLou</b></i> It's not about diagnosis it's about keeping our kids healthy. Has your children been with this care center through this previous winter with infections that turned to pneumonia? My son has S1235R and G551D. He sees Dr...

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>LouLou</b></i> <br /> <br />It's not about diagnosis it's about keeping our kids healthy. Has your children been with this care center through this previous winter with infections that turned to pneumonia? My son has S1235R and G551D...

Thanks guys. I am very frustrated. See, the problem is, I have no idea where to take them for a second opinion. We live in Boston, and where we go is where everyone goes. Our doctor today said that he had discussed their cases with a group, so I am assumming that even if we saw another doctor...

Thanks guys. I am very frustrated. See, the problem is, I have no idea where to take them for a second opinion. We live in Boston, and where we go is where everyone goes. Our doctor today said that he had discussed their cases with a group, so I am assumming that even if we saw another doctor...