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"Glyconutrients" are pretty much the same as sugar pills -- that is, if they seem to work, it is because of the placebo effect. All the sugars that your body needs are easily obtained from the carbohydrates you get in plant foods. Please do not waste your money on sugar-based supplements...

This is one of those hard decisions where you'll have to go with your instincts and your observations of how your daughter responds to the inhaled steroids. There is increasing evidence that they are absorbed through the lungs to a significant extent. We had our son on them for a couple of...

In colonization, bacteria have taken up residence in the respiratory tract, but are not multiplying rapidly, as they would in a infection. Not everyone with cf becomes colonized by Pseudomonas, but almost 30% have it by age 1, rising to 80% by adulthood. For various reasons having to do with...

Whoa, guys, I'm afraid this study is still just highly exploratory. It looked only at isolated cells taken from the noses of four people with double deltaF508 CFTR, one person with deltaF508/4016ins, and one person with non-deltaF508 CFTR mutations (R1283M/E60X). The cells were treated <u>in...

Dear ozgal2001, Please save your money. Mannatech's "essential sugars" product (Ambrotose) appears to be nothing more than some plant extracts plus vitamins and minerals. There is absolutely no theoretical reason (or scientific evidence) to support using such a product in cystic fibrosis...

Sewage and water that stands around for long periods without disinfectant are both risky, because they tend to grow not just Pseudomonas, but also other bacteria, such as Serratia, that can really be a problem for people with cf. (Incidentally, although it may sometimes seem that way...

If you have a gas stove, you might want to consider switching to electric. The emissions from gas stoves are a problem for people with respiratory conditions. Also consider using a radiant heater (there are lots of portable models -- deLonghi makes one) in your baby's room, rather than the...

All enzymes do is break down the components of food, <u>which are more easily absorbed because they are reduced to smaller pieces</u>. The enzymes your child takes in her Ultrase are the same types as are made by a normal pancreas-- one type breaks down fat (lipase), another breaks down...

When you fill a new prescription for Pulmozyme or TOBI from the Cystic Fibrosis Services Pharmacy, you will be sent a free Pari LC plus with the first order. Then you will automatically receive a new one with (I believe) every fourth monthly order. With Pulmozyme, you can also arrange to have...

The Cystic Fibrosis Services Pharmacy (which you can access at www.cff.org) sells the Pari nebulizers at $11 each. Also, if you order Pulmozyme or TOBI from them, you get a free Pari every four months or so. Bambi, Jordan's mom

The Corus antibiotic, aztreonam, is available now by i.v. only. Corus is doing trials with an inhaled form using the new super-fast e-flow nebulizer system. But the trials are still only in Phase II stage, so it will be at least a couple of years before we know how well this strategy works...

It's a good idea to give the albuterol just before the Pulmozyme. Albuterol is intended to open up the airways, which should allow the Pulmozyme to get deeper into the lungs. Bambi, mom of Jordan, 16 w cf

Try avocado and nuts for good fats. Beans and rice together work well for protein. There are now lots of soy-based meat and milk substitutes available. If there's a Trader Joe or other health food store in your area, check it out. You'll have to learn to read labels, though, to be sure...

When one of us is sick, we wear a surgical mask if we're around Jordan (you can buy masks from some medical supply companies). And whether we're sick or not, we always wash our hands after we sneeze or cough. Sometimes if there are a lot of kids coming to school sick during peak flu season...

We found it helpful to get a baby backback and carried our son in it as long as he would fit. People seemed much more reluctant to touch him when they had to reach around a parent's face than when he was more accessible in our arms. Bambi, mom of Jordan (16 w cf)

Hi JohannaMarie, The post about milk and intestinal blockages may be one I wrote back in November. My son had multiple hospitalizations for intestinal blockages before the age of 5. We tried enulose, milk of magnesia, Colace, Golytely, different enzyme doses, antacids, prunes, lots of fluids...

Hi David, My son, now 16, had an MRSA in the summer of 1998. He was treated with rifampin (a pill), which worked, but took a full four weeks to get rid of the bug. Jordan has never cultured MRSA since. In the past, MRSAs were almost always acquired from the hospital or clinic, where Jordan...

Good point, Julie. Another useful resource is a booklet called "Cystic Fibrosis in the Classroom", which gives an overview of CF, explicitly explains why children with CF qualify for 504 plans (and <u>should</u> have them, even when no health problems are evident), and gives examples of...

Luke's absolutely right. Don't even try to boil the disposable nebulizers. The Pari LCs can be boiled, and these are the recommended nebulizers for TOBI. I believe the makers of the Pulmo-Aide also have a reusable nebulizer that may be boilable, and there are probably a few others on the...

Chloe, I really sympathize with how hard it is to keep up with the nebulizer cleanings. I hate it when my son goes on TOBI for that very reason. Nevertheless, it's not a good idea to resuse a TOBI nebulizer that hasn't at least been rinsed very thorougly and allowed to dry. The reason is...