Recent content by ajlindsley

I am going to contradict myself. My daughter has cultured Mycobacterium abscessus. I would suggest staying away if you are able. The bacteria is so difficult to treat with a lot of horrible side effects. That being said, my son (with CF) has not cultured M. abscessus the 2 years that my...

I would think that theorectically if you are up to date on all your vaccinations then you should be protected BUT, I think post transplant when you are on immune suppressing drugs I wouldn't risk it. That brings a question to my mind. Say a person with CF had all their vaccinations as a kid...

My daughter was on Aquadeks a couple of years ago and we noticed a strange (bad) smell coming from her. She was in 5th grade and it was just sweating out of her. It took us awhile to figure out it was the vitamins. I took one sniff od the cap and realized it was the same smell. Since we can...

I have 2 kids with CF that have been on pulmozyme for years and they have never experienced stomach pain from it. Does your daughter do her treatment at the same time everyday? Maybe its more related to the time of day and has nothing to do with the pulmozyme? Hope you can figure this out soon.

wow thank you for all your input. She has been off the Cipro for a week and a half. Her doctor was the one who took her off. My daughter was on it for sinus congestion and it wasn't helping and the doctor said to stop for that reason and to avoid problems with her tendons since she is so...

My daughter was recently on Cipro and now I think it has caused her to develop tendonitis. She stopped taking the Cipro over a week ago. Has anyone had this happen to them while on Cipro and how long did it take to recover from it? I know she needs to rest the joints, ice and ibuprofen. She...

The clinic that my kids go to are doing regular CT scans every 3 years, no annual xrays. Our dr explained that they can see "trouble" much sooner on CT scans than they can on xrays. For example, some mucus plugs that might show today on an xray have shown up 3 years ago on a CT scan.

Are you in the USA? If so, in your son's newborn screening he should have had a test looking for CF. Call his pediatrician and see what the results say. The screening can miss some with CF but it is at least a starting point. How is his weight and growth curve?

Hi: Have they done an IgE level to check for ABPA? That is one thing that can cause pfts to lower and not respond to antibiotic treatment. Also, has he had a CT scan or a bronchoscopy? Hope he feels better soon. Amy

Hi Jarron: My daughter had her first culture of m. abcessus last June. She had her 2nd positive culture 8 weeks later. They have not started treating her yet. Like your son her PFTs were stable and actually even improving. The treatment can be hard on their system so they were waiting for...

HI: When I first brought up that my daughter was having low blood sugar episodes I don't think her CF team believed me. They are so used to seeing CFers with high blood sugars. My daughter wore a continuous BS monitor that showed she was having nightly drops in her blood sugars. She...

My son started carrying his enzymes in his lunch box last year (2nd grade). We were lucky that we had a school nurse who knew him personally and knew he would be responsible to take them. I would say that in our school district he is probably an exception. A long time ago I read a story about...

Thank you all for your replies. I will definitely put a call into her doctor. She is not currently being treated for her NTM because it is not causing any problems for her. The treatment can be long and harsh. Her lung function is actually it's highest it's been in a long time (112%...

Hi All: My daughter was just prescribed azithromycin. When I googled it to see what the side effects were, the CFF had some information on there that it should not be taken if you have been dx with an NTM. One place I read said that taking azithromycin could increase your chances of culturing...

Hi, There is such thing as a sensor that can be inserted into your belly or upper arm that will continuously monitor your blood glucose. My daughter had one put in for 7 days 2 years ago. They put hers in her upper arm as she is a gymnast and they thought that would be the best place for hers...