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Typically when he starts Tobi, he trys to clear his throat about once every minute, but never produces any sputum. Now he is starting to produce sputum. We are hoping that he is clearing out the bugs that he has cultured for in the past. Also, he played soccer last night and did not have his...

He did get the medicine. The UPS guy gave them to me as I walked in the door! Took the first dose last night. He said he was breathing better through his nose within an hour, he also had a headace that went away. This is the first I have heard of aquagenetic wrinkling. I will ask him...

Has taken nearly a month for the insurance to overturn their decision not to provide Kalydeco patience with R117h. Had to go through the appeals process. But the good news is that it is supposed to arrive today! Will let you know how things progress since we are not involved in any study.

This is awesome news for my son! Although the prescription was denied by UHC twice. They said the R117H mutation was not approved yet. They are making us go through a formal appeal in writing by snail mail. I guess this is SOP for them. We have been waiting for this type of drug to be...

Nice to see the CFF getting a huge amount of money. But If you follow the money trail it comes back to the high price of insurance that we all pay. My wife basically works to pay for our insurance. I suppose that if the CFF foundation did not get the money it would have been in some other...

Also, I would not rely on maintaining any level of insurance if your are in the US with the way our health care system is changing.

It is backwards. Insurance exists because bad things happen. If homes never burned we would not carry fire insurance.

If you are not able to afford IVF might you might not be able to afford the care of a child with CF. Latest and greatest drugs are 30k/month. If you are middle income the opportunities for financial aid are limited in the US. My wife and I also faced this question after child #1. We were...

I am no expert either. But unless the colonization and damage was already severe, I would think the same mechanisms that stop non-CF people from being colonized would fight off PA or MRSA when the CFTR function had been returned to normal operation. So anyone corrected early enough would not...

I looked into this about 10 years ago. Insurance would not pay for this and they were just starting to have offices outside of Georgia ( the country near USSR). Overall looks like a great old technique that lost popularity when antibiotics came out. Thing that is scary for Doctors is that you...

Was told that there is a possibility of the lungs repairing themselves. Some coal miners and smokers who quit early enough often see their damage reversed. A similar thing could happen to those taking meds that reverse the damage mechanism early enough. The drugs don't repair anything, but...

Interesting, I am guessing that there is a lower limit of lung function where the initial shock to the system of releasing all of the build up in the lungs is too much for the body to take. I wonder if this is not just a dosing issue. I don't know if changing the dosage would lessen the...

Just read the article. The argument about using existing treatments is poor. The argument about states not having the money seems to be more valid, although that rarely stops them from overspending in other areas. If all the states stood together to lower the price would Vertex drop the...

I knew this was going to be a huge issue. The other thing to keep in mind is that Vertex in the past has invested in break through type drugs(Aids related?) only to be surpassed by other companies drugs. Vertex is just trying to get their money while they can. Kalydeco is such a great...

True but vertex has had early success combining Kalydeco with other drugs. My simple understanding, is that Kalydeco only helps those that have partially functioning cells. It corrects the cell function at the end of the the process. Other drugs are showing signs help with the process at...

Talked to my son's CF doctor this past week. He said Kalydeco is just the first in a new generation of drugs that will slow/stop the progression. The life expectancy charts are going to be improved drastically. These drugs do slow the progression. Most drugs simply shift the life expectancy...

XBOX or any other video games. Buy a new game that he likes and limit it's use to when he is on the vest/inhaler. My son can play most games while using a vest/inhaler. He says he has a hard time reading/writing :). Must be a lot tougher starting at 7yo.

It is official the application has been submitted to the FDA for approval. I was told this process takes 6-9 months. Wish this was done 6-9 months ago when the test was completed, but they had to rethink the application since the test endpoints were poorly defined. I am very thankful that...

FEV1 although is an important measure does not tell the full story. If looking young was an important measure, Pulmozyne would be comparable to applying make-up. Kayledeco/Lumacator would be like slowing down the ageing process. Yes they both do the same thing, but one addresses the root...

He has 2 gene mutations to have CF. R117H is one of those mutations. 5T Allele is an additional designation associated with a gene mutation. For example if R117H was a name of a car like a Civic, 5T would be an additional designation like Hatchback or coupe. Usually they identify two gene...