Our humble advice….

Some of the things on my list of mistakes may seem to lack even an ounce of common sense, but I wish to share them anyway. The tips may also be common sense, but it took us awhile to figure them out. Hopefully they help!!

1)First and Foremost….we all have our favorite hand sanitizer that we keep EVERYWHERE. I am a firm believer that a hand sanitizer should not replace soap and water cleaning, however when hand washing is not available, we need an efficient way to clean our hands. I believe so strongly in using CleanWell. It is the only hand sanitizer that is all-natural and alcohol-free. The ingredients in CleanWell are safe for kids, non-toxic, and come from rapidly renewable resources that grow abundantly worldwide….and it is lab proven to kill 99.99% of harmful germs!

CleanWell

2) Know the importance of not only a healthy Cfer, but a healthy family! USANA Health Sciences helps to assure you and your family the best chance at staying healthy. USANA received a 5 star rating from the CGNS. According to the Comparative Guide for Nutritional Supplements, companies that receive 5-Star Gold Ratings must meet the “highest standards of quality in research, formulations and manufacturing.” The guide also noted that companies awarded the NutriSearch Gold Medal of Achievement™ have gone to considerable expense to meet and exceed the most stringent of manufacturing standards. USANA was one of only four companies rated this highly.

USANA Health Sciences

3) Always use the correct nebulizer kits and nebulizer compressors. There are only certain nebs and compressors that work for pulmozyme and TOBI. I have found that the Pari brand seems to be the most highly recommended for pediatrics. We were given the wrong setup at the hospital and continued using it with May for 7 months before we realized that she was not receiving her meds. Always double check your equipment!! You will soon become an expert on CF in addition to being your child’s advocate. (Here is a CFF document explaining more options).

Pari LC Plus

Pari Masks

Pari ProNeb Ultra II

4) Always STERILIZE your nebs! We have gone from a quick rinse and sitting out all day (waiting for little homeless bacteria to make themselves comfortable) to boiling for 10 mins and then putting them in zip-lock bag once dry, to……finally getting a wonderful tool for making sure your nebs are always sterile! The Philips AVENT Digital Steam Sterilizer. It sterilizes your nebs and then keeps them sterilized for 24 hours.

AVENT Steam Sterilizer

A nice additional option for drying the nebs prior to use is the Germ Guardian. It sanitizes through dry heat, so you can use it in addition to the Avent Steam Sterilizer.

Germ Guardian

Other options are:

The Avent microwave steam sterilizer

The Medela Quick Clean Micro-Steam bags

5) Never mix your meds. Always use separate neb kits for each med. Both Pulmozyme and TOBI need their own neb kit. Use a magic marker on each piece of the kit so you never confuse them.

6) Do not wash the tubing for the nebulizer.

7) Use manual CPT whenever possible, while it is more “involving” many adult CFers say that they get more out of five minutes of manual CPT than 30 minutes of a Vest TX. We have gone back to using manual CPT almost exclusively. An added benefit of the manual CPT is the wonderful bonding time for parents/caregivers and the child. Here is a great video, courtesy of Ronnie Sharpe.

7) Enzymes are best to be given in an ph balance consistent with applesauce. Items such as pudding, yoghurt, ect have the wrong acidity level and do not allow for the full effect of the enzymes.

9 ) While the caloric/fat intake needed by cfers is unreal to say the least, do not forget that a lot of that RDA can be met without feeding our kiddos “crap.” Maylie gets the bulk of her fat and calories from:
-drinking half and half
-organic beef and chicken
-grinding up nuts and putting them in everything
-oil, lots and lots of oil! Preferably extra virgin olive oil, safflower or canola
-whole milk yoghurt and ice cream
-cheese
-and of course natural cheetos!
-We buy organic Portuguese sea salt. It is incredible and the flavor is so much better than regular salt that we put it in everything! Fine Ground Traditional Portuguese Sea Salt

10) I always have my keys with me when I am out and about, so I have a Ezy Dose keychain caddie that is attached to my keys, that way we never have a slip up with enzymes.

Ezy Dose

11) The Swedish trampoline treatment that is outlined in our documents section (available here) is a wonderful form of airway clearance. The trampoline that I have found to be the closest in size to that which is found to be most efficient in the studies preformed in Sweden is the 55″ My First Airzone Trampoline.

Airzone Trampoline