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DS was in daycare/preschool; however, for us kindergarten was terrifying. We KNEW the daycare policies were enforced regarding sick kids, we knew they sanitized toys, surfaces, instilled good rules regarding hand washing, keeping ones hands to themselves.... So we worried ds was going to be...

I'm trying to recall, what did the genetic testing results show... I thought I recalled a mutation(s).... I know there have been several people on this site who are treated as if they have cf as mutations haven't been identified yet, some diagnosed via sweat test, some thru nasal differential...

My child has me save the pickle juice and make Popsicles out of it. Ghastly, but he loves it. Most people wcf crave, need more salt. Ds has a salt shaker in my car, various ones around so he can take hits off it when he's sweating out more salt. His doctor indicated as long as he gets...

DS has been on Orkambi for a year and a half. We still have him do 3, yes 3 vest and neb treatments a day. Same medications albuterol/atrovent nebs, pulmozyme..... His symptoms have been primarily digestive and sinus --- typical cf sinus disease ----since he was diagnosed at just a few days...

Thank goodness! I just double checked our formulary list for any updates. Worry about enzymes as they're rather spendy. Nothing new, except a dispensing limit on Orkambi of 4 tablets per day. Er, isn't that what one is supposed to take. Have heard of taking less to start, but not more...

After I graduated from college, most places didn't offer health insurance. I worked as an administrative assistant in different areas --- tv station, hospital and insurance company.... And didn't get health insurance until I was 25 years old and even then, the deductible was cost prohibitive...

Pre-existing conditions, coverage until age 26, no lifetime caps are pretty much the biggies for us. We've been fortunate to DS is relatively healthy -- prior to Orkambi, I believe our pharmacist said he and his other cf customers were $80,000 a year patients..... The first NICU stay for 4...

DS really isn't into sweets either. He likes nuts --- dry roasted peanuts, sunflower kernels, almonds; however, due to digestive/past obstructions we limit his intake to a couple times a day. Otherwise he could eat a whole jar of peanuts and not feel so great the next day. He's discovered...

Has anyone here ever replaced parts --- specifically the pressure gauge on their Invacare MOBILAIRE 50 PSI Compressor? I've found the part online and appears to run about $40-55 a pop....

For those who live in the states and are on Creon, you can get vitamins and nutritional drinks or protein bars thru their cf care forward program. We get vitamins and either zone perfect bars or ensure "juice" https://www.creon.com/cfcareforward They also have a copay assistance program as...

We get DS' vitamins from the Creon CF Careforward program and usually get the multi vitamin and then supplement with extra generic A, E and D. This last time I ordered their multivitamin with extra Vitamin D http://mvwnutritionals.com/product-category/vitamins-supplements/softgels/

I think there may be confusion with the name --- Eflow vs. E-rapid. Just like we have Pari Vios and where you're located it's called a Pari Boy. I don't have any experience with the Pari E-rapid, but hopefully someone on this site has experience with the Pari E-flow, which is what this appears...

The psi isn't strong enough for Tobi with the pari e-rapid and pari trek. So you don't get all the medicine. Has your Pari boy always been noisy or has it just occurred over time? We had issues with ds' first Pari (can't remember the name -- it's now Pari Vios), got louder and treatment...

I was just skimming my notes from our struggles with getting PA last year. And someone at BCBS did send thru paperwork for an "emergency over ride" to enable Walgreens to send us a one month supply while we were waiting for our "predetermination request" to go through. On a side note, I...

With ds' Orkambi, I was on the phone several times a week with my insurance, vertex gps, the prescription drug contact, the pharmacy.... I'd get told it was in process and to be patient, told the doctor hadn't returned the form, told the doctor sent the wrong form --- a form sent by insurance...

Update... So I'm visiting with my coworker about this and he asked what pharmacy we go to, because his son's inhaler was $200 for a one month supply. Turns out our insurance dropped it off the list -- it's non-formulary. So he they need to either find an alternative that meets his needs or...

Last year, unbeknownst to us, ds' Orkambi became a medication that required prior approval and it took me about 4-6 weeks to straighten things out and get the prescription filled. For a medication ds had been on for 6 months. With that, were limitations on how much we could receive at a time --...

Unfortunately, it's the luck of the draw. You can do everything you're supposed to do in terms of treatments, meds and still have issues. Locally we had a 12 year old who had a double lung transplant a few years ago. Got a nasty mycobacterium infection, while in the hospital. Damage to his...

I believe he had surgery several years ago, not a transplant, but to remove a very infected, diseased lung. So his transplant was a single rather than a double lung transplant.

I use a backpack or a messenger bag when we travel with ds. Holds a lunch bag cooler, his Pari vios, neb cups, baggy with pills and enzymes, albuterol. Both have multiple compartments. Both have a bigger compartment toward the back and a smaller one in the front for items I need to get to...