Search results

Hi My son started taking Kalydeco Sat - 5 doses so far. Today he has had a horrible headache and nausea. He did throw up a lot of junk. The headache subsided for a bit and then was full throttle again. Anyone have these side effects? I left a message at clinic. I haven't heard back. Just...

Last year my son had a borderline 2 hour glucose tolerance test. His numbers were higher than they would like but after taking sugars at home over many days - it was decided he has cfrd but to only treat with insulin if over 200 or on steroids. Neither of which has happened over the past year...

Just curious what the lab counts are for those of you that have cultured mrsa for a while without symptoms? Thanks!

After a 2 hour glucose tolerance test confirming the diagnosis - we met with the endocrine team today and they are suggesting a pump for my son. I am a Type 1 diabetic. I am learning all the differences between that and cfrd. I was just wondering if anyone out there is on a pump and has any...

Hi - Jason has been on Bactrim for over a month. He started vfend or vorazidole 2 1/2 weeks ago. He has also been on prednisone for over a month. He was down to 10 mg every other day of the steroid and he started with what looked like a sun burn. Now he has a rash on his arms and chest...

Just looking for some thoughts..... Jason started with the adenovirus 3 weeks ago. It wouldn't go away and he needed to eventually be hospitalized as the cf symptoms exacerbated. Xray showed some - not enough to be considered pnemonia. Pulse ox was 84 too. He was in for a week on fluids...

HI - I haven't posted in a long time. Jason was just released from the hospital after a week - a virust gone astray. Lots of harsh coughing and throwing up until they started treating for reflux. We are home. He had alot of soreness - rib and back paing - in the hospital. It has actually...

Hi - Just wondering if anyone has experienced side/rib pain - both sides? Jason started with it about 24 hours ago. It seems to get worse after eating. It doesn't hurt when he coughs or breathes deep. He didn't get injured. No fever or nauseau. Any feedback would be greatly appreciated.

Jason has been on TOBI from Sept. through May, on 28 and off 28 for the past five years. I don't believe he has cultured pseud. or any of the related bugs for at least three years - only staph. I am just wondering how others that prev. were colonize with pseudo are treated? I am wondering if...

Hi - We went for Jason's annual check at the cf clinic. He has had a pretty good year. His check up went well - xrays good, pft's up from last time, looks good, lungs sound good. We will await blood and culture results. Then whild J was out at the bathroom, the dr. mentioned that sometimes...

Hi all - any feedback would be greatly appreciated. Jason started with a cold 2 weeks ago (we all caught the same cold). We are all better. Jason's as usual is taking longer and causing problems for him. He started on prednisilone 5 days ago with all of his other usual treatments. He has...

Hi - these are my son's recent results. Just wondering how others are treated. His staph has been like this before - we watch and see as it seems to keep the pseudo at bay. How about the others? Just curious and always thankful for your input. SPECIMEN DESCRIPTION: THROAT CULTURE: 2+...

Hi - We are attending a Philadelphia Flyer's fundraiser tomorrow evening for CF. It is a dinner and auction type event. I have been asked to speak on behalf of Jason - 8 yrs old - and our family. The audience will be past and present Flyers and their administration as well as families and...

There was a wonderful CF awareness story this morning on The Today Show. It was about a 13 year old girl and her Laps for CF fundraiser. I thought it was a good segment. If you missed it and would like to see it, you can view it on The Today Show (msnbc) web site.

Hi All - A friend of mine who works over at CHOP just told me that a cf boy that had a lund transplant 2 weeks ago will be on the news tonight. Just thought I would share.

I am listening to Jason's cough and feeling like I am going to jump out of my own skin. I can't think straight. Every cough is like a - I don't know what - I feel like I am losing it. There isn't anything to do for him. He has had all of his meds and pt. He is blowing his nose as it is like...

Hi - Just curious what everyone else's experiences have been. We get Jason's CF care at DuPont Hospital in DE. He was recently admitted to CHOP (Children's hospital in Philadelphia) for an elbow fracture. It was during his 28 day on cycle of TOBI. Well he couldn't have it while admitted...

Well I haven't been on in a couple of days because Jason broke his elbow. We went to the ortho surgeon today and it looks like he needs surgery for pins. I am so frustrated for him. As if he doesn't have enough to handle. We are going to need to have it done at Children's Hospital which has...

Hi - Just curious how best to keep the mouthpiece of the advair inhaler clean? Thanks!

Jason is getting to an age where he is going over friends houses more often to play. He has had about 6 different friends houses so far where we haven't had the issue we recently ran into. He went over to play and when I picked him up I saw the father smoking. Jason didn't smell smokey and...