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We use one cap of Miralax twice a day every day. One of the doses I mix with Gatorade zero. We also do Prune juice mixed with diet pepsi, every day. Dried fruit like apricots dried pineapple. Fruits like apples and pears. Lots of veggies. Encourage fluids. If it gets really bad I have given...

We are only allowed one every 6 months and have to pay a copay on that(it's so stupid) We use 8 separate nebs a day. We used to get 2 a month(got a script) but a couple years ago even with the script it was denied. So I try to get them free when I can, sometimes the CF center has them on...

Interested if anyone does inhaled Vanco and how that goes for them? It was brought up at an appointment last visit. Zyvox is the antibiotic of choice we use for exacerbation but this was brought up as an option to try. Might be nice to avoid the systemic nature of oral zyvox. Is Vanco inhaled...

Would like to add the chore I hate most is cleaning the nebs not sure why but it's just one more thing; the pressure cooker we have cost about $100 and needs to be replaced every couple years from the daily use.

Wondering how you all handled neb sterilization in college dorms? Currently we use a pressure cooker to boil nebs at home. When we travel we use a microwave with those steam bags. Also use disposable nebs if lazy. My daughter actallu brought it up, wondering how she would clean her nebs in...

We get our Hypersal free at Foundation Care Pharmacy with every order of Creon. It's a promotion. We recently switched to this to decrease the $ we spend on copays. Does your son do Hypersal 3 times a day?

Is your son taking Creon as an enzyme? I found this promotion from Foundation Care Pharmacy(mail order pharmacy) that for each order of Creon you get a free box of 7 % Hypersal. I switched my daughter pharmacy to them just for that and so far we have gotten Hypersal free twice. It was a PIA...

How old is your daughter? My daughter has had terrible constipation as well. Our CF doc had to consult with a GI doc who was familiar with CF for input. Has your daughter had a belly Xray? When my daughter was sooo backed up we tried a home cleanout, which was basically Dulcolax tabs and...

I think every child and adult with CF is individual. The waiting for results is the hardest part. For CF; they are making such progress with treatment the outlook is very hopeful. Hoping you get the answer soon.

Thank you all for your wonderful input! I think as long as there is good air circulation(outside) it's worth a try. She is so creative and I want to continue to encourage this:)

https://www.cff.org/What-is-CF/Diagnosed-With-Cystic-Fibrosis/ Found this on the CF website lots of good info.

Hope it's not CF but definately needs to be addressed and ruled in or out. When is her appointment with the CF doctor? A sweat test is a test they can do as well as blood work for looking for the genetic mutations for CF. The Cystic Fibrosis Foundation at www.cff.org is a recommended site...

Wondering about recommendations for paints that will not irritate CF lung? My daughter has a strong artistic streak(very therapeutic and relaxing for her ) She was asking for high quality acrylic paints to try painting on an easel. My sister went to art school many moons ago and said it could...

Have you spoken to Hill Rom? I spoke with someone at HillRom with that exact same concern because I did not want to get the Monarch if we could not still keep the Hill Rom 105. They reassurred me that since the Hill Rom was 100% paid for and under a life time warrantee that would not happen...

These are the types of heavy duty compressors I am looking at. Pretty expensive, the one from Precision Medical looks similar to the Mobilaire.

http://www.precisionmedical.com/homecare/air-compressors/pm50-easycomp-compressor

https://www.vitalitymedical.com/50-psi-compressor.html?matchtype=&network=g&device=c&adposition=1o2&keyword=&gclid=Cj0KCQjw3KzdBRDWARIsAIJ8TMRJPnGcFG7jOQWNK6suVmGDzc7tBqfcVhtS-xiGScQRaOHkp09V2OcaAsevEALw_wcB

The RT at our CF Clinic helped us with the paperwork from Hill rom for the Monarch. Has your son had the opportunity to try on a Monarch to see if he likes it? I feel like it is better suited for a boy's body because of where the pods hit the chest. It is pretty intense Chest PT. At first I...

thanks, I cleaned the inside of the compressor as there was alot of dust in it. Works better this morning. But I am still looking at how to get a new compressor that is similar. insurance compnay will only cover a compressor from a local DME company none of which carry anything like the...

Any recommendations for a new Mobilaire 50 PSI compressor. We have had ours for over 3 years and the pressure gauge is not acting right, nebs taking longer. This is the first time this has happened. Suggestions for replacement compressor?