grassisgreener
New member
Hi Ethansky, I go mostly by the dosages on this website:
www.sharktank.org (click on the supplements link) This site also explains some of the benefits for each thing.
We get the Mg from Kirkman's: www.kirkmanlabs.com I used to use the sweet powder but now we just use the capsules and open them up bc it is a little easier. Michelle shared a link to a document on MG written by Kim Payne. Kim is who helped me figure most of this stuff out 4 years ago just after my daughter was dx with CF. I came across her the yahoo cfnutrition messageboard.
Let me know if you have anymore questions!
My daughter did use TOBI when she cultured PA. We did the GSE on the off months. GSE is a natural antibacterial and can kill PA specifically. I have only met one other parent of a CFer who has nebulized it.
Oh ya, we use the Neil Med Sinus Rinse bottle. It squirts 8oz of saline (4oz for each nostril). For a baby, I would use regular saline and just squirt a tiny bit or try an aerosol saline like Simply Saline which will make a fine mist - we love this stuff. We have all kinds of saline at our house! Xlear is a saline spray with GSE so we use that daily too in hopes of keeping PA (and other bacteria) from growing in her sinuses then draining into her lungs.
My daughter has been really healthy, no hospitalizations the only trouble she has had is sinus related but obviously we cannot 100% attribute this to the things we do each day but since she has done so well, we will keep doing them!
Here is another great website: <a target=_blank class=ftalternatingbarlinklarge href="http://www.cfnutrition4life.com/site/news.php
">http://www.cfnutrition4life.com/site/news.php
</a>
ETA: While we do all of these "extra" things they are always in addition to meds/treatments from her CF doctor and approved by her CF doctor.
www.sharktank.org (click on the supplements link) This site also explains some of the benefits for each thing.
We get the Mg from Kirkman's: www.kirkmanlabs.com I used to use the sweet powder but now we just use the capsules and open them up bc it is a little easier. Michelle shared a link to a document on MG written by Kim Payne. Kim is who helped me figure most of this stuff out 4 years ago just after my daughter was dx with CF. I came across her the yahoo cfnutrition messageboard.
Let me know if you have anymore questions!
My daughter did use TOBI when she cultured PA. We did the GSE on the off months. GSE is a natural antibacterial and can kill PA specifically. I have only met one other parent of a CFer who has nebulized it.
Oh ya, we use the Neil Med Sinus Rinse bottle. It squirts 8oz of saline (4oz for each nostril). For a baby, I would use regular saline and just squirt a tiny bit or try an aerosol saline like Simply Saline which will make a fine mist - we love this stuff. We have all kinds of saline at our house! Xlear is a saline spray with GSE so we use that daily too in hopes of keeping PA (and other bacteria) from growing in her sinuses then draining into her lungs.
My daughter has been really healthy, no hospitalizations the only trouble she has had is sinus related but obviously we cannot 100% attribute this to the things we do each day but since she has done so well, we will keep doing them!
Here is another great website: <a target=_blank class=ftalternatingbarlinklarge href="http://www.cfnutrition4life.com/site/news.php
">http://www.cfnutrition4life.com/site/news.php
</a>
ETA: While we do all of these "extra" things they are always in addition to meds/treatments from her CF doctor and approved by her CF doctor.