Search:

Welcome! You sound similar to my son since he was not diagnosed until he was 5 years old, and was misdiagnosed with asthma. We moved when he was 2yo and 4yo so a relationship with the same ped...

There are a few battery operated, ac/dc adapter nebulizers out there. They came in handy while traveling to Europe. We have never attempted to use a Hill-Rom vest in the car thinking the voltage is...

So is your child on Pulmozyme or Tobi?

We bought the InnoSpire Elegance Neb Compressor which states a 44 psi, but it is way slower than our 50 psi.

I'm guessing the reason my son's was approved is because his current 105 is 10 years old.

So for those of you who have been on Symdeko, Orkambi, or Kalydeco, have you been able to reduce any of your neb treatments? My 15yo son just started Symdeko in August. Thank you for any info!

Yes for ABPA. My son’s rose for a few years before treatment was necessary.

I’m so sorry you’re going through all of this. My 15yo was diagnosed this past July with ABPA. His PFTs dropped to the 50-60s, IgE was 900, and was wheezing past 2 CF quarterly appts. Dr starts...

Are you talking about the tube popping off the compressor? We had that issue with the Mobilaire until I read about using a zip tie on the end of the tube attached to the compressor. It worked for us...

My son is not on that med but when his impacted wisdom teeth needed to be extracted he ended up having to get it done at the hospital. The oral surgeon tried doing it in his office but the sedation...

My son was on 250mg until he turned 10 and then upped to 500mg.

Anyone's child in the new clinical trial for a new sodium chloride neb treatment? DS13 has an appt next week to see if he is eligible. It only lasts 4 weeks: 2 weeks off sodium chloride, and then 2...

My 13yo son is 5'3 1/2" and 111 lbs. He just went to the doctor this past week.

Sent email!

Yes very much so! My latest challenge was with my son's Creon. They refuse to process the copay assistance on it anymore. They charge $90 whether it's a 1 month or 3 month supply so he only received...

My son started having issues with his enzymes and started taking Prevacid. It helped tremendously. Doctor said people with CF have more acid in their gut so the enzymes weren't that effective because...

Thanks so much everyone! I received 2 gift cards!

Thanks so much! I signed up using Jeff as my referral. My email is [email protected] if anyone wants to use me as a referral.

Thanks,
Sharon

Yvonne, there is a Tobi co-pay assistance program that will pay up to $4000/year. Our co-pay is now $600 since the generic became available, but we pay less than $10.

Thank you everyone for the helpful info. It sounds like it will be worthwhile waking up earlier! He started the extra dose this morning so we will see what happens.

My son went to his CF appt yesterday and his pfts dropped 5-10% (FEV1 75) from his last visit there 6 months ago. Dr changed his pulmozyme from once a day to twice a day. He went to a conference...

I am so sorry you are having to go through all this. My son just had a bronch last month and there was never a mention about things getting stirred up. I would definitely take the pulmonologist's...

I am praying for you and your family. It breaks my heart that you are going through this. Definitely get that book by Lisa Greene that someone else suggested - it has great ideas.

Yes! I applied last year for my son but he was denied because his PFTs were above 70. Thank you Lord for that! But a few weeks ago I received an email from the dr who said they have changed the...

So happy for those 150 people!