Search results

No bronchoscopy, but our son cultured it one time last spring, had one round of TOBI, and hasn't cultured it since.

Also, our clinic still recommends boiling 10 minutes instead of just the 5 minutes. Here's a link substantiating why. You have the scroll way to the bottom of the article (past where it says "conclusion" . . . which you might think is the end ;) . . . to where you see the title "Boiling.")...

Our clinic has stressed that the neb cups must be washed and disinfected after EVERY use. Here are the updated cf foundation guidelines that Gammaw posted a link to. (Our clinic used to tell us we could reuse the same cups all day and only disinfect once a day, but they finally corrected their...

I've ordered some size 3's and they are working well!

Thank you!

Our whole family takes it . . . We started giving it to my son (with CF) because of the high vitamin A and D levels. This is the brand we take. http://www.radiantlifecatalog.com/product/butter-oil-cod-liver-oil-blend/67 http://www.radiantlifecatalog.com/category/67 And this is why we take...

Thanks Rebjane. I recently saw those, but was worried they would be too small. My son is 4 though, so if it still works for your daughter at 12 that is good news!

It seems like the popular thing on a Facebook CF group I am a part of is to put the masks in the top part of the baby bottle sterilizer used to sterilize the nebulizers. I don't have a baby bottle nebulizer, but was considering trying the WABI or Baby Brezza (popular in the CF group), as they...

What about the PARI fish masks for the nebulizer? The instructions state they should only be washed with warm, soapy water, but that really bothers me too with CF. Why do the instructions state they can't be sterilized? Will a baby bottle sterilizer or alcohol start to break down the material?

Aboveallislove . . . Did you ever hear back from PARI as to whether the German and USA materials are the same?

Are you referring to a double boiler? You bring the water in the bottom pan to a boil, and the heat from the bottom pan warms whatever is in the top pan (i.e. melting chocolate).

Please let me know what PARI says. I have been following and really appreciate all you and Gammaw have discovered. It drives me crazy that I can't sterilize the spacers!

Regarding not using the Spacer . . . My son gets very hyper with both Albuterol and Xopenex. After doing some research, we started using the spacer to help minimize negative side effects per our doctors recommendations and some other parents' experience. Even as an adult, I use the Spacer now...

AboveAllIsLove Thanks Aboveallislove. It's encouraging to hear that the 6-11 yr. old study will be completed so quickly. Like you, most of Nathan's meds the doctors have him on (albuterol, pulmozyme) have not been studied under age 6. If it's coming soon, we can wait. In the back of my mind...

Off Label for under the approved age? Stephen, Could Orkambi be prescribed off label for someone under the approved age? My son is 4 with double Delta and has learned to swallow pills already. We are very anxious for this new treatment to be available to him.

The Biotics Research Brand is excellent. They have an emulsified version of the individual fat-soluble vitamins for people with absorption difficulties. (Similar formulation to ADEKs, but with only D). We give our son 2 drops of Bio-D-Mulsion Forte (with gives him an extra 2,000 IUs per...

Could you please email it to me as well. My email is janine@midcoast.com. I have a 3 year old son with double delta F508.

We live in Midcoast Maine and we have tested positive as CF carriers. Our child is yet unborn but due in Aug 11. We are trying to find out information about good doctors for our son who would be proactive in treating CF if he does have it. Obviously we won't know until a sweat test can be...

We live in Midcoast Maine and we have tested positive as CF carriers. Our child is yet unborn but due in Aug 11. We are trying to find out information about good doctors for our son who would be proactive in treating CF if he does have it. Obviously we won't know until a sweat test can be...

We live in Midcoast Maine and we have tested positive as CF carriers. Our child is yet unborn but due in Aug 11. We are trying to find out information about good doctors for our son who would be proactive in treating CF if he does have it. Obviously we won't know until a sweat test can be...