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Thanks everyone! We learn about each issue as it arises, but for some reason did not think this would be an issue for awhile. She goes in a few months & will retest then. This was her first time to have elevated levels, so hopefully it was due to the antibiotics and not something more serious...

Our pulm nurse called a few weeks ago & told us that Erin's liver enzymes were a little elevated & we would have watch it to make sure that it doesn't mean anything. She was on bactrim for an ear infection when her blood was drawn. I am a little worried, but going to wait until the next blood...

Our pulm nurse called a few weeks ago & told us that Erin's liver enzymes were a little elevated & we would have watch it to make sure that it doesn't mean anything. She was on bactrim for an ear infection when her blood was drawn. I am a little worried, but going to wait until the next blood...

Our pulm nurse called a few weeks ago & told us that Erin's liver enzymes were a little elevated & we would have watch it to make sure that it doesn't mean anything. She was on bactrim for an ear infection when her blood was drawn. I am a little worried, but going to wait until the next blood...

I remember that day...no more applesauce in my purse <img src="i/expressions/face-icon-small-smile.gif" border="0">. Congrats!!

Just wanted to let everyone know that Erin has gained 1.5 lbs in 3 weeks & is finally on the charts <img src="i/expressions/face-icon-small-smile.gif" border="0">. She is receiving 3 can of pediasure at night as a boost to her normal diet. At first, she didn't feel like eating, but now...

Amber, When I do manual CPT on Erin (4), I use oxygen masks with tape on the hole where the oxygen when come in. Our RT gave us some when Erin first started doing CPT. It is much easier than trying to cup your hands on their small little backs. To clarify, they are the masks used in surgery...

My daughter was diagnosed when she was 14 months old and we started CPT pretty much right away. They might be letting you soak everything in before starting you on the daily treatments. The earlier you start, I think, the more routine it will become for your child. Erin is 4 now & somedays are a...

Congrats on his birthday and making it past your doomsday prediction. I could not help but read your and think of all the little predictions that I have made in my head, especially when Erin was first diagnosed. I remember asking what mutations are better or worse to have, about her colognizing...

Erin started Pulmozyme about 4 months ago & is doing GREAT. In her 4 short years, it seems that spring & fall are hard for her. She has an asthma component to her cf and has allergies. With all of the drainage, she usually gets sick and then it can turn into an infection. She started pulmozyme...

Thanks everyone! Erin is home now & doing great. She was really sore for the first two days and is still recovering, but able to get around very easily. She had the new one-step button put in, instead of the mickey. Apparently, this one does not inflate. It is pretty flat and very easy to...

Erin has been low on vitamin E twice and had to take a RX for that. They also recommended she go outside for at least 15 minutes per day without sunscreen to help with her low levels of vitamin D. They weren't low enough for a RX. This was during the winter and it seemed to be better in the...

Forgot to mention which one we tried...Juice Plus. Sorry!

We tried it because a good friend was selling it. My husband and son both broke out in a rash. I took them off & it went away. Then I tried it again & the same rash came back. I did not put Erin on it because I talked with her nutritionist & she didn't really see the need. Erin drinks Pediasures...

Erin was diagnosed with CF at 14 months and when she was 2 1/2 cultured for her first pseudomonas. It was devasting, so I know what you are going through. She was on Cipro for 30 days and inhaled Tobi for about 8 months (28 days on, 28 days off). She has not cultured positive since and it has...

Erin is going to get a G tube next week. We have battled with her weight issues since she was colonized with her first pseudomona. She was breast fed and plump, but then had her first bout with a cf flareup. She lost a good amount of weight. When she was two and kind of little (well below the...

Thanks for the responses, I will definitely keep in mind the butterfly coat hanger...I didn't want her to see an IV pole in her room, either. I know this is the right decision for Erin because she has always battled with her weight. I just wanted to know how long it hurt afterward and if it was...

Hello everyone! It has been awhile since I have been online...busy, it seems. Anyway, Erin (4 w/cf) is getting a feeding tube soon & I wanted to know what to expect with her recovery. Any comments from CFers or parents who took care of them afterward. Thanks!!

Has it been broacasted before? I remember watching something on Discovery about CF a few years back. Even so, I already have it recorded <img src="i/expressions/face-icon-small-smile.gif" border="0">

I just received an email from our local chapter about a search engine that donates $$ to charity with each search. Go to www.goodsearch.com and follow the instructions (no personal info needed). I set it as my homepage and the CFF - Bethesda, MD chapter is the only one listed. I don't care which...