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Yay! It's that time!! Owen hasn't had a tube feeding in quite a while and his GI had said we can take it out. Woohoo! I am wondering if any one can share any tips. He doesn't want it out (he's always hated changing it) and thinks it will hurt. He also says he worries if he will need one again...

Hi! It has been forever since I got so much support from this forum for my son. So much has happened since then I have a sense of positive obligation to bring awareness to an issue that happened with us. Let me first start off by saying that my son is doing well. He is off his tube. He lost...

I hate to write such whiney posts but I had to report that after yet another check-up, we are now adding sinusitis to Owen's list of "non-CF" troubles. It was not our regular doctor this time (long story) but he thinks Owen's sinuses are a mess based on exam and mouth breathing, throat clearing...

I saw some other posts about teeth in general but I was wondering about kids and losing their baby teeth. Anyone else's kid delayed? How about baby teeth being in rough shape? Owen has only lost two teeth on his own and just had two pulled today (he is almost 8). This is a little yucky but his...

After ten + weeks of a respiratory infection, we noticed that Owen lost two pounds since his last clinic appointment seven weeks ago (same scale, same type of clothing, etc.). We had reduced his tubes from 900 mls a day to 600 mls about two months ago. I am wondering if we should increase his...

Here again <img src="i/expressions/face-icon-small-sad.gif" border="0"> Owen has been on bactrim for almost six weeks. His cough is better than it was seven weeks ago but not better than two weeks ago. He still brings up stuff with CPT and his voice is very scratchy. Last week, I asked if we...

We had Owen's Bactrim renewed for an extra week and he had originally improved on it. But, then he got a "cold" last week and as of early yesterday, his cough has returned. That one he had for six weeks with gobs of mucus coming up. It is not as bad as it was at it's worst before but it is...

We were told Owen should be on Bactrim for two weeks for his Staph culture/cough but we ran out of it three days early. Does everyone use it for two weeks? In all these years, I have never run out of meds that were measured. Seems odd, but it's true!

We got the Ambry results back and no known mutations were found. He has the standard 7T/9T variants (which I think we already knew) and the disclosure that there is a only .1% chance that Owen has CF. So there you have it. In the meantime, we will keep him on Creon, which is the only medication...

We got our results back today and Owen did in fact culture Staph. I know, shocking. I only joke because several of you predicted this after my first appt. post and the low fever post in the families section. At Rebjane's suggestion, I will request the results report. What I do know is that the...

Owen has a 99.9 fever tonight. He is still coughing a lot and was really crabby, ears bright red. I called the on-call pulmonologist who said she is not worried about this low fever, which she wouldn't even call a fever. I am supposed to call the CF clinic in the morning to let them know but the...

So, Owen is now getting CPT and it is working well, as far as we can tell. He coughs after every side. And, even when he coughs during the day, lots of stuff continues to come up. How did you teach your kids to spit it out? It seems like this should be easy but, it hasn't been. Sometimes, if he...

We went to the other CF clinic here today since they have a better track record of follow-up between appts. We were told that Owen has severe asthma of a rare type that causes a build up of mucus vs. wheezing and reactions to cold/exercise/allergies. They said he needs CPT to get the junk up...

It's me, again.... I just got the lung CT report and now I am hoping for opinions or experience. It says: "there is mild bronchial wall thickening in the lingula with streaky opacity here as well as in the dependent lower lobes that may reflect atelectasis or scarring." Our doctor told me that...

I know I have had lots of encouragement to do CPT. I have not started anything yet, there is no excuse but the lack of access to learning it. I asked when we were in the hospital for that last round of tests but was told no until our next appt. in late March, if needed at all. Anyway, my...

I wanted to re-ask this question away from the emotions of the other post. I do not have an opinion about the level of fear, except to say that as a mother, I know the mother-bear feelings of trying, at all costs to protect your child. But I have a different dilemma. We have a very important...

Hi, I know some of you use the Infinity pump too and I wanted to pass along the important information we got today about a problem with the new screw top 500mL bags. Our home health care company sent a flyer with the following statement: "A caregiver of one of our patients recently called to...

So, here it is, forgive my ignorance... Do all CFers have positive throat cultures for something??

We have our appointment at the CF clinic on Monday. I am starting to play tricks with my own mind and am so tempted not to go at all! We have been through years of searching for Owen's diagnosis and we have been failed so many times, I am pretty much counting on it happening again Monday. I...

I need some advice about talking to our 7 year old about CF, again. We are going to the CF clinic in our area in a couple of weeks and we will obviously be talking about it in front of him. He knows his karate teacher has it. He has also done the Climb for the Cure so he knows how serious it all...