Search results

Sharon and Lindsay - Thanks so very much for all of the ideas and input. I do think my challenge is wording it all in a way that I am able to say what I want and what will help those attending understand why we need them to help - while keeping it not too scary for Jason. Thanks again. I'll...

Sharon and Lindsay - Thanks so very much for all of the ideas and input. I do think my challenge is wording it all in a way that I am able to say what I want and what will help those attending understand why we need them to help - while keeping it not too scary for Jason. Thanks again. I'll...

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...

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...

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...

Hi Kate - I don't have cf, my son does. I have been on insulin for almost 30 years though. I have a few things that might help - the shorter the needle the less painful and don't use cold insulin. Also, even if your arms are really thin - if you lean against a door jamb with the back of your...

Hi - My son that has cf has this same problem when he is congested or his sinus' are acting up. My other son with out cf had this problem - it turned out that his adnoids were very enlarged. He had them removed and has been good to go since then. I hope some of this might help.

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.

they just emailed me again and it will not air until July 4th. Not sure what time yet.

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.

Hi Terri - As others have said - I would also suggest checking with the Dr. as to what modification he would advise. Either altering the start of the next TOBI course, doing 2 weeks on and 2 weeks off if possible then returning to the 28 on and off, or maybe adding the 5 on at the end. We...

Hi - In my experiences, I would not just give him regular cough medicine. You need to check with the Dr. Most will advise on a cough expectorant and never a suppressant. Many cough medicines have other components that you need to check on first. Some have decongestants and or antihistamines...

Hi Salli - Did Archie go for a reg. pediatric appointment or a cf clinic appointment? Just curious as the Doctor's reply sounds more like a regular pediatrician or pulmonologist and not a CF Clinic Pulmonologist.

Hi Amy - He was allergy tested a few years back; however I think you may be right. He uses flonase and claritan - I don't thing they work well for allergies for him. Flonase works well when he has congestion and polyps. He took singulair and stopped when he started advair - I am wondering if...

Hi Mark - Thanks for replying. You and Julie are amazing people individually. Your babies are so incredibly blessed to have you. Sometimes it just helps to know someone understands. I have been searching the site and have come up with some ideas. I am also going to call the dr. tomorrow and...

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 - I am glad things went so well. I have been behind on my catching up on posts... What is a PET meeting?

Hi - just wondering why esp. males would need the zinc?

Hi - Jason was 18 mos when he started TOBI. During the evening, he usu fell to sleep while we did the manual CPT, so we would use tha PARI infant mask with the TOBI while he slept. That was always the easy one. If we couldn't keep him engaged long enough for the morning TOBI (Barney usu. did...

Hi Jane - That stinks! The last time Jason was in it happened to us 2 times. It was such a tease! The right hand and the left hand at most hospitals do not communicate so well. Hopefully today you got better news. Jo Ann - mom of Jason 8 w/cf