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http://investors.vrtx.com/releasedetail.cfm?ReleaseID=1033559, A wonderful day.

What I would say is that they should know that every CF patient and parent is different and copes in a different way and that with this disease coping is key so do what they can to assist. For instance our DS doesn't like "goofy demonstrations with dolls" or "down talk." And he likes to know...

Our clinic has us bump treatments to 4x a day and if not improving in about 3 days then does an antibiotic based on prior culture.

Sorry. Should be flares up in GI track. I don't know how ecoli works but those symptoms sound like what they always say is ecoli and if it's in his cultures he must have a source for it...his GI might not think of looking at cultures so maybe ask him if there could be something related to ecoli...

Was your DS the one who culture e-Coli? Wonder if that could be an issue that flares up in his first track?

Hey Dad. So sorry you are facing this. I'd suggest you read Lisa Greene's Parenting Children With Chronic Health Conditions. It has some great dialogue suggestions that might help: One I can think of: "Honey I love you very much and know you'll be eighteen soon and can do what you want...

I may have a connection with Make A Wish foundation. Do you want me to see if they can swing?

I want to say it was around $1200-1400 but it was several years ago so I can't remember well. But I want to just say what a good investment! After our son's first IV treatment I was able to test him throughout. When sick he was at 50% , before we left hospital about 70%, then up to 100% and...

Thanks all!

We purchased this for our son when he was 5. http://www.nddmed.com/index/easyone-plus The diagnostic version. Several reasons: It is the one our clinic uses off-site for testing. It is self-calibrating. It uses disposable mouthpieces. It tells you if you did the test correct. It has...

Thanks! Luckily DS doesn't remember NG tube but I do! But I'm five no biggie so that will help calm him.

Love the side Note!

So interesting. I'm going to discuss with our doctor at the next appointment. My gut is with you but then I countered it with "well if he was exposed at hospital to something he has 2 weeks on antibiotic at home to kill it." His gut is actually pretty darn good...almost better, but we'll see...

Thanks Autumn--I'll definitely warm his arm up before!! GREAT pointer.

Thanks Penny! I'll let him know! He will be relieved!

He wants to know when they remove it if it will hurt? And whether they need to put that sticky protective covering or just a bandaid? A big piece or a little piece? And how many days will it stay on for?

How strange. I'd think it would be uniform with CFF. I had argued for 14 days because DS hadn't cultured anything new; definitely had RSV; we were 100% compliant and in fact did all his treatments in hospital too; he was completely cough free when we left hospital; and he had bad GI issues and...

Have you searched pubmed.com? If you have a name for it I can try to find any research on it/how it is treated.

Than\ks! That ma\kes sense and is helpful

Just curious: does your cf center do 14 days IV if you stay in. hospital but 21 if you go home? And do they sa 4 treatments per day the entire time while on IV? and do they somehow giv you ten extra hours every day?