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The enzyme issue can be confusing. Ds is a snacker. On weekends he sometimes eats constantly. Sometimes I have him start with half his usual dosage of enzymes, then halfway thru give him more.

Hopefully you'll get some answers. I know there are some people on this site who are treated as if they have cf or have gone on to get nasal differential testing to assist in a diagnosis. DS cultured pseudo early on and was put on tobi. Also, when he was symptomatic we increased chest...

Correct me if I'm wrong, but based on symptoms, I suspect genetic testing was only for the most common mutations. There are over 2000 mutations for cystic fibrosis. IMO Push for more testing! I think you're in a good place in terms of treatment with the CF specialist, so they can treat it as...

DS was diagnosed at birth due to meconium illeus. If he hadn't had the obstruction, I doubt he would have been diagnosed until later. Newborn screening wasn't until 2005 in our state. His symptoms were mainly digestive and sinus, plus his sweat test at 2 weeks was a normal 32. Without...

Are you on enzymes? I would check the website for the drug company that provides your enzymes. Vitamins aren't covered under our insurance. DS is on Creon and this is what we use ---...

DS uses the MVW Nutritionals as well. He had been using SourceCF, and prior to that AquaAdeks. We get his vitamins via the Creon/CF Care Forward program. We also get a three month supply of nutritional bars or drinks. We used to fill out a form and attach a copy of the pharmacy receipt from...

Some people on the site take some sort of laxative on a daily basis to keep things moving. Others get that feeling -- feeling of discomfort, fullness, lack of appetite and realize they need to take something -- mucomyst orally, golytely, milk of magnesia..... To get a good clean out. I'm...

Just a little side story about ENT's here. Years prior to ds being put on Orkambi, he gradually had difficulty breathing through his nose. Was a mouth breather, snored, would cough/laugh or gasp if he spoke really fast... We couldn't get any thing out of his nose with sinus rinses, when...

DS has always had sinus issues, his nose never runs, so if he does get a head cold we end up doing sinus rinses to get that junk out. When he first started Orkambi his symptoms were similar to a head cold -- stuffy nose, scratchy, hoarse throat --- coughed a little bit but it was mainly due to...

It sounds like newborn screening came up with one mutation, so the doctors are starting with a sweat test to see if more testing (genetic) testing is warranted. I'm sorry you're going thru this and hopefully you'll get some answers soon. Our son was diagnosed after a neonatologist suspected...

We've had a few meetings with "well meaning" counselors or school psychologists. Apparently some have the idea that if there is a physical illness, psychological ramifications go hand in hand. One meeting last year with a busybody began with "these kids..." and ended the sentence with...

Unfortunately, there are a lot of us on this site who have absolutely no family history. My family & husband's family have genealogy records going back hundreds of years. I looked for early child/adult deaths and there was nothing except one stillborn uncle 75 years ago. My son was diagnosed...

I'd thought for awhile they'd stopped doing transplants for a brief period of time, but obviously they're doing so again. I guess I'd want to know number of transplants they've performed compared to other centers.

Oh and I see has sinus issues. If he's old enough, have him do sinus rinses with warm saline water. In the states most pharmacies and even big box stores have kits with a bottle and saline packets. My son has been doing this since age 4. His nose never ever runs as his sinus mucus is very...

Being that he has symptoms and cultures typical CF bugs, I would push to have him treated for the symptoms. Antibiotics for the specific drugs, chest physiotherapy (CPT) to keep his lungs clear, nebulized medications -- bronchodilators to open up the lungs to help clear them, dnase/pulmozyme or...

DS was diagnosed shortly after birth due to a bowel obstruction. For the most part he didn't have any respiratory symptoms, some sinus issues. His cf doctor is very proactive and stressed keeping lungs healthy despite no symptoms -- cf is a progressive disease and eventually due to extra thick...

I'm skeptical about the article... Sure there are medications that won't work for everyone, there are side effects. I think of Orkambi and DS' benefits while others have issues.... Looking at the amount of time it takes for a medication to get approved, the trials, studies --- all happening...

DS has always been a sweater. Wet head, sweaty pjs, sheets and pillows. When he was little he would sometimes lay on the kitchen floor because he liked the coolness.

Have you tried Cookie Butter or Kerfluffle? Cookie butter was originally only available at Trader Joes, but I've found Bischoff brand at Target made from ground up cookies, which I put on graham crackers or nilla wafers for DS. Kefluffle is peanut butter made in small batches in Oregon and...

Oh, and as far as getting sick.... DS was probably one of the healthiest kids in daycare and in kindergarten. He missed half a day because he ate a huge cupcake during a birthday party at school and barfed. Sick policies require immediate dismissal when vomiting is involved. 1st, 5th and 7th...