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DS had one when he was 6 and I don't recall there being any issues with removing it. After the trauma of an ng tube, IV poke(s) and other procedures while dealing with his bowel obstruction during his 3 week hospital stay it was hardly even a blip on his radar. The nurses removed it, I think...

Hill Rom has come out with a new vesting system, similar to the Afflo (sp) vest. Wonder how this compares to the regular vest system in terms of pressure and hz settings. Sent an inquiry for more information. Here's the link to their site...

When DS was first diagnosed wcf, I "met" a woman online whose child was diagnosed wcf and had a vest, but later because the because his mutations were so rare or not considered disease causing, it was determined he didn't have cf and they were searching for other answers to his issues. Anyway...

That is my understanding. When ds was first diagnosed due to a bowel obstruction caused by meconium ileus, his doctors spoke of possible future issues or meconium equivalent aka DIOS or distal intestional obstruction syndrome

Could be too that in addition to the inflammation being reduced that stuff was coming from his sinuses making him cough and that he doesn't have anything to cough up. Ds on a normal day has nothing to cough up and during exacerbations and colds, he tended to wheeze and his cough sounded more...

Am I correct in reading under #1 that the test was to detect the 32 most common mutations? Or did they test for more?

This announcement makes me a little wary. We've had issues with our BCBS Pharmacy (Prime) in the past -- issues with prescriptions we've never ordered being charged to insurance, not being able to get scripts filled due to already having received said shipments which we never ordered, nor...

DS' is still a teen, but we've always had an infection disease specialist as his primary CF physician then we have a local pediatrician who handles his local needs. One of my friends had a double lung transplant 12 years ago and had has a family practice doctor in town who works well with his...

I saw it on facebook and it brought back a lot of memories of DS' NICU stay --- crying/praying in the shower, anger/screaming fits in the car when dealing with setbacks. When DS 6 and had surgery for a 2nd bowel obstruction and a 3 week stay due to complications I had to sneak away to...

Depending upon how much I walk -- tend to put on more miles in the summer, I replace my shoes every 6-12 months. I wear ascics. Currently I'm wearing Gel Noosas. I'm fortunate in that I have a smaller size foot -- 7 to 7.5 women's so I've been able to buy youth size 6 to save money. I'm now...

I imagine he wouldn't be too thrilled about adding a sinus rinse into the mix. Ds likes to do it cuz it grosses me out and I dry heave.

Have you increased the number of vest or CPT treatments you do a day? When ds develops a cough we increase vest treatments from 3 a day to 4 and sometimes do mini cpt treatments on problem areas.

Ugh, I thought after they got older, one didn't have to worry so much about RSV! I was so terrified of it when DS was an infant and in daycare despite monthly synagis shots. I still remember the doctor telling us to beat that cough/wheeze out of ds. Hopefully they'll get him figured out and...

DS has had both a Wii and Xbox systems. Xbox is handsfree -- originally had an xbox 360 with a Kinect, now has an xbox one. Wii had more options in terms of being able to exercise, but he lost interest and got into more in depth games -- minecraft, skyrim, fallout 4. When he was younger he...

It is scary! Especially when you hear stories of people who do everything they're supposed to do and still come down with a CF bug, get knocked for a loop from influenza.... Which is why I try not to dwell to much on those numbers and focus on trying to keep ds healthy. I try very very hard...

I always understood higher number = cf. Guess a lot depends though on the age of the child. Teeny tiny infants it's more difficult to get enough of a sample or an accurate sample. Case in point our then 3 week old with positive genetic blood test results had what was considered a normal 32...

DS has been on Tobi off and on since he was 2 or 3 months old and cultured pseudo. Cultured if off and on over the years, usually no symptoms. The two times he was symptomatic with an exacerbation he was put on cipro. He did get put on IVs once because he was already in the hospital for...

I know a number of people, who have dd F508, including my child with varying diagnoses and progression. My son was diagnosed at birth due to meconium ileus. His sweat test at 3 weeks was a normal 32. He always had very loose stools, sinus issues and really no long issues/pneumonia. Friend of...

Does your insurance cover any of the other enzymes? Our BCBS will only cover creon or Zenpep. Ds was on a different enzyme and we had to switch to creon or pay 50%. We also got a copay card and only had to pay a small amount until we reached our out of pocket maximum.

It is overwhelming and just take it one step at a time, one day at a time. Get into a routine and eventually enzymes, treatments will become second nature. I have a friend who just had a baby w/out CF and she and her husband panicked the first few weeks because they kept thinking they forgot...