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JENNYC, Could you email me the link at littlelab4cf@Comcast.net There's been one or two topic posts about Creon's time release coating and its effects. I looked up all the skinny on Creon and it has an enteric coating that releases at ~2 hours. A lot of digestion without a properly functioning...

Thanks for the important notice. You are vigilant and I appreciate your keeping us informed and current. LL

That lick is a reliable source of early diagnosis, as early diagnosis goes. Mom needs to be optimally hydrated including electrolytes to insure it's in her milk. One thing for certain, mother's milk is especially helpful for baby if it has CF. I appreciate that formula bulks faster but...

Your son's symptoms are a match for what used to be diagnosed as a symptomatic carrier. CRMS diagnosis is more accurate but in both diagnoses, the gut and head are always out of whack. Persistent ear, nose and throat infections go hand in hand with constipative IBS, gastritis and GERD. Usually...

We used to have our doctor's home number and on occasion, he came to our house. This was also a time when doctors were exalted as gods and nobody wants to interrupt god's golf game for trivial matters. The fact of the matter is, medicine is a 24/7 business and though I was too young to remember...

My first coconut water was right in the crucible of the current craze, Malaysia. A friend and I were driving through the countryside and stopped at a juice stand. After a manic sales pitch we both bought a coconut water in the shell. Yeeuuckk! This warm saltwater tasted like crap if anything...

Abdominal problems related to CF can be nearly impossible to fine tune and manage well. I'd like to second Printer's straight forward advice and if possible, see Dr. Steven D. Freedman at BIDC Boston. A lot has come out of the Cleveland Clinic recently and they, like Dr. Freedman prefers to let...

Also glad to hear how full and wondrous Craig's life is. Talk about adventure, it took me a decade to rack up the various experiences of his year. If being skinny was a contest, CFers would rule. I was always the skinniest kid and a natural mark for bullies. Little can improve Craig's physique...

S1235R is one of those CFTR (Cystic Fibrosis Transmembrane electrolyte conductance Regulator) genes that doesn’t need a second copy to be virulent. Roeann’s description and the excellent reference article says as much. Terminology that I rarely see is found in the article referenced by Roeann...

Yes you had the same sweat test everyone has been referring to. You've been battling health issues most of your life, CF diagnosis or not. CF itself is an acronym for a genetic disease full of acronyms and "sweat test" is just shorthand. The sweat chloride conductance test is not necessarily...

FYI: Not all “approved” CF centers have CFF accreditation. Medical schools tend to make their own rules and many have self-accredited clinics of all kinds including CF. Late diagnosed CFer's are crawling out of the woodwork. In the recent past, ER visits for pancreatitis diagnosed 170,000 with...

Anything that makes testing for esophageal cancer easier and more accessible gets my vote! Somehow swallowing a sponge tethered to a string doesn't conjure warm and fuzzy images. Undoubtedly there's advantages of speed, cost and convenience to the test, encouraging doctors and patients to...

The same histamine reaction that causes our nasal membranes to become inflamed, irritated, swollen and drown in excess mucus production can happen throughout the gut. An almost universal CF complaint is bloating and our swollen, tender intestines are at fault as much as any gas or fecal...

WOW! The doctor's theory fits well for the guts of many animals. Mammals are augmented with powerful enzymes that suit our omnivorous diets plus bile to break down fats for further digestion. Our food is digested beginning with chewing, and amylase is introduced as it is mechanically reduced...

I can't begin to figure how to make a 21 month old boy sweat. I'm pushing 65 and I still can't sweat on command. My non CF brother is five years my senior and a born athlete. When brother Bob was about 14, he converted a basement room into a gym. At first he lost weight and after a year or so...

I doubt that the genetic testing showed anything that does more than confirm your existing "mild" CF diagnosis. On the flip side, having a genetic confirmation behind your presentation of CF can be a reaffirmation that quiets a lot of concerns. One drawback of a late diagnosis, as in my case...

Caution is always prudent when antibiotics and allergies are involved. Today's antibiotics are cataloged by families or types and by families of pathogens and mechanism for killing. Ciprofloxacin and Levofloxacin have a common molecular base called quinolones. The risk of reacting to another...

Absolutely, Bronchitol powdered inhalant works as well as xylitol, potentially. I haven't seen a commercial formulation of xylitol like Bronchitol that is in a powdered form. Like albuterol rescue inhalers that deliver a dry microcrystalline powder, finely powdered mannitol may have a delivery...

Kristan, A 5% xylitol solution has been established as safe for healthy lungs (1). My final remark from my previous post "Everything from nebulizing colloidal silver to xylitol is on the table and mucoid P.a. is tough enough for what I ordinarily wouldn't recommend to be considered." wasn't a...

Mark_s83, Essential oils by definition are Volatile Organic Compounds or VOC's both terms are referring to the essence sensed by smell not essential as in everything necessary included. Lavender oils range from essential oils sold to perfumeries to heavy plant oils best suited for animal feed...