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As a mother of a CFer and as a nursing professor I was so angered at the head of the nursing departments response! If you would like the perspective of nursing faculty feel free to email me. hduncan@ix.netcom.com and I hope this does not discourage you from the profession! Ok I am even more...

As a mother of a CFer and as a nursing professor I was so angered at the head of the nursing departments response! If you would like the perspective of nursing faculty feel free to email me. hduncan@ix.netcom.com and I hope this does not discourage you from the profession! Ok I am even more...

If it is a sweat test and is done on site you get the results almost immediately. My son's was done at a CF center in a special lab and by the time we got up to the clinic the results were in. He was diagnosed by a pediatric gastroenterologist and then was referred to CF. His was way pos. 89...

Hi! Just wanted to answer the above. CF is autosomal recessive meaning both parents have to be carriers in order for a child to have CF. You have a one in four chance with each pregnancy of having a child with CF. Kind of like this. C represents a normal CF chromosome, c- a mutation for...

My 5 year old is a summer baby and he started kindergarten this year. I was a little worried, but he has been doing great. He is the smallest and gets teased on occasion, bu he also has a posse of freinds and does well. He just had a G tube placed and a few days before Ian and I did a little...

Some pharmacies can add flavoring to the prilosec liquid. That helped when we were on Zantac.

We have the 104 as well and it is pretty portable. Just a bit of trivia though, if you set your cell phone on top of it and the phone is on vibrate and goes off it turns on the vest. Who knew!

My son is at Rush University Hosp. in Chicago. They have been great and they have an adult clinic as well which will make for an easier transition when he gets older. It's either 20 minutes or 450 days to get there depending on Chicago traffic! We have our first admission on thurs, for a G...

What I tell my patient's when they ask about where there newborn should sleep is where ever every one gets the most sleep. In their crib, in the parents bed, strapped to the ceiling fan on high, if everyone is sleeping that's where it should be! That's why we are going to have Ian in our bed...

does he like peanut butter? I put a spoonful of PB with baby carotts sticking up like trees and he eats the carots with the PB. I do the same with apples. I hope that helps!

Rush also has an adult CF clinic. That's one of the reasons we decided to stick with them so we have the continuity of care when Ian turns 18.

Maria, thanks! I am also a Chicagoan, although in the city limits. Ian doesn't eat much breakfast as it is and I hate to completely cut it out. Maybe if we turn it of when we get up at 6. I wish they could tell you how it would work best for your individual child! Of course I also wish I...

Did your daughter still eat breakfast if it ran til 7am?. That was one issue about running it until 7 was that he might not want to eat breakfast. heather

On the same stretch of road where part of the Blues Brothers was filmed (it was an unfished highway and we all learned to drive there!~) When did you first travel outside the country

Jamie, thanks! I'm going to go research that right now! My son doesn't need it as an inhaler, but I perscribe it alot. I need to see if it is covered on Public Aid (I work with homeless shelters). Let us know how it is working for you and thanks!

I think that's actually what we are going to do at first. Ian had a NG for a year when he was diagnosed at 6 months and he slept with us because he was so little he would get the tubing all wraped up including around his neck! For the first few weeks I think we will have him sleep with us. He...

I am also in Chicago, but at the Rush Clinic. My daughter was 3 when my son was diagnosed at 6 months old. We had no idea we were carriers either. Ian was diagnosed through the pediatric gastroenterologists at Rush and we stayed with the clinic. They have been great, very supportive and try...

Right now Xopenex is only in liquid form for a nebulizer. I dont' think at this time they are devloping for use as an inhaler. There are a number of inhlares out there that are powder, Advair being one and Pulmicort being another although neither of those are used as a rescue inhaler. There...

Peptinex, thanks! I'm going to write that down and ask the nutritionist. Still doesn't solve the getting up in the middle of the night does it.... sigh

I love Xopenex. When Ian was diagnosed at 6 months he was on nebs with Abluterol and didn't nap. Just what I needed! I'm a NP so I asked to switch to Xopenex and it has been great!!! I was at a confrence and the Xopenx people were there and I hugged the guy. "I love Xopenex!" I don't think...