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Been there, done that Sending you a private message

I have been using a bottle sterilizer for my son's nebs for 7 years. I use tap water, so it kicks the bucket every 18-24 months due to mineral deposits. At $40-50 for the sterilizer, I would rather pay that then deal with bottled water. My FSA provider lets me get reimbursed for the cost of the...

504 Plan Hi. My son is 7 and also went to our town's preschool program. My son attended as a model student (1 model student for every special needs student attending). I had peace of mind knowing that he was in school with a nurse. In addition they were much better equipped to handle his...

Jane was one of the first CF mom's I met 7 years ago after my son was born. I found out about Jesse's passing at the Great Strides walk yesterday. I was expecting to see Jane and then I heard. I saw this thread earlier in the week and never put two and two together. My heart is breaking.

Considering taking a new job that offers Aetna. Wondering what people's experience has been with getting them to cover things. Our current insurance covers in-home chest PT by a visiting nurse, they have paid for an e-flow, and require very little preauthorization for CF meds.

It is ironic that you were a lifeguard and have done so well. When our son was born, his cf specialist said if it was my kid, I would pick-up and move to the ocean. All my patients who live at the ocean do better. Our house was on the marker 2 weeks later.

Just wanted to come back and let everyone know that my son is six weeks post surgery and he had no issues using the Vest while he recovered from having his tonsils out.

I had an amino at 26 weeks. It was a short procedure that was slightly uncomfortable. With both CVS and amino this is a slight risk of miscarriage. That is why I waited about so long into my pregnancy. Test results took about 2 weeks. Both CVS and an amino can be used to test a fetus for CF.

My husband and I were in your position 7 years ago. Ironically, when we got pregnant with our 7 year old son, we went through preimplantation genetic diagnosis, so we would not have a child with CF. We were shocked when our son's newborn screening was positive for CF. We later found out there...

It will be okay My husband and I were in your position 10 years ago. We waited until I was 26 weeks along to have an amnio. We were having our baby regardless, but wanted to be prepared. He turned out to be fine. Ironically, when we got pregnant with our 7 year old son, we went through...

Hi everyone, thanks for the replies. We do go to MGH and they have never had the question come up for a tonsillectomy, which has a unique risk of post operative bleeding verses other surgeries. Our CF doctor is far more liberal did the ENT, so he told us to give it a try. My son is 5 days post...

Does anyone know if it is safe to use your The Vest following a tonsillectomy? Our 7 year old CFer had his tonsils out yesterday and the ENT has no expericence as to whether this would be to much movement and create an issue. Our son woke of this morning coughing up a lot of crap, so I would...

We stick to the ocean and salt water pools only. Salt water inhibits PA from growing. You run a much higher risk swimming in chlorine pools and fresh water lakes and ponds. More and more people have salt water pools. We were even able to find a salt water filter for one of those little above...

My son has always refused every premade shake supplement. I have found that he will drink whole milk mixed with 4 scoops of toddler formula. I buy enfamil enfagrow or the Target Up & Up generic kind. That is very high in fat and calories, he drinks 1-2 a day and it has always kept him at a...

It has been almost 7 years since I was in your shoes, 26 and shocked to find out my newborn had CF. Fast forward almost 7 years and we just survived our first clean-out this month. There will be sad days, but there will be far more days with joy. My son is happy and well adjusted. He is a...

If you read the vertex releases in the phase 2 studies for 809, it helped for those with one copy of deltaF508, but not as significant as those with 2 copies of deltaf508. I am guessing they are doing continued trials for those with the 2 copies to help ensure that hey can get the drug through...

My 6 year old, who is almost 7 was admitted to the hospital on May 31st for 8 days. He contracted an infection and went through two courses of oral antibiotics, but one of his lungs wouldn't clear up. For the first time, I understood the sticky mucus that I had been hearing about for years. It...

Hi Chelsea, We use the First Years Bottle Sterilizer (<a target=_blank class=ftalternatingbarlinklarge href="http://www.learningcurve.com/product/detail/Y1441A2?locale=en_US) ">http://www.learningcurve.com/p...Y1441A2?locale=en_US) </a>to sterlize our son's neb and mask. We wash it with hot...

Hi Chelsea, We use the First Years Bottle Sterilizer (<a target=_blank class=ftalternatingbarlinklarge href="http://www.learningcurve.com/product/detail/Y1441A2?locale=en_US) ">http://www.learningcurve.com/p...Y1441A2?locale=en_US) </a>to sterlize our son's neb and mask. We wash it with hot...

Hi Chelsea, We use the First Years Bottle Sterilizer (<a target=_blank class=ftalternatingbarlinklarge href="http://www.learningcurve.com/product/detail/Y1441A2?locale=en_US) ">http://www.learningcurve.com/p...Y1441A2?locale=en_US) </a>to sterlize our son's neb and mask. We wash it with hot...