Search results

Apparently all the required childhood vaccines that you would normally have for entry into kindergarten

Hi - so we have been informed that there “may” be an unvaccinated child (medically exempt) entering into the same class as my son who has CF - it’s a private school so they don’t have to take this child on and we have been with the school for a while. They have asked for our advice and my...

Hi all i have been searching all over about where we are for pipeline drugs for dd508 and r560t. My understanding is that none of the vertex drugs work in these mutations (is this the one they stopped?) thanks a million j

We started giving salt to our 2 month premature Son straight away the pharmacy made a saline solution that we used to add in small amounts over a whole days feeds so it never altered the taste too much, once he was on to formula (4 months old) we switched to using McDonald's salt packets for...

To those using vibra lung at what age do you think someone could realistically use this? we are always looking for new options especially as we travel so much and the vest is a pain to drag around!!!

Hi just wanted to let you all know that the new style implants do not need to be replaced every ten years they now come with a life time warranty - they are a gummy style so even if the outside breaks the inside is unlikely to leak - I don't have CF my son does so not sure if you would be able...

Apologies ignore my post - worked it out should read the full article on the link!!!

Hi sorry this maybe a stupid question but R560t is listed as a missense mutation and my understanding is it's a class 2 gating mutation, can someone clear up for me? I assume that either way it isn't helped by either drugs? Thanks !

I don't have cf but had twins one with cf and one without. If there are any questions you have about having and raising twins (body changes, pressure on your lungs etc) I would be more than happy to help. Congratulations having twins is so special if I were younger I would have another set...

Hi any chance this may work in f508 and R560t

My little monkey is the same and will only eat them when they are a certain ripeness not too soft and not too hard if I get it right he eats a whole one if not it goes in then comes straight back out!

Thanks Roeann - there is always the possibility that orkambi may work in other traffick/folding genes and if not their are plenty of others in the pipelines, gotta keep positive and in the mean time like all the other wonderful CF parents we do whatever it takes to keep his lungs as healthy as...

He is nearly 3 but I checked and from what I saw R560t and d508 are both class II so kalydeco wouldn't work - I think the classification in the blog in the link is incorrect. But if I'm wrong please let me know - thanks

Thanks for your reply I will read the link you sent as I thiught R560T was in the same category as dd508 so will check that out! I guess I should give a bit more info, my son is actually to young to get any of the drugs currently or about to come to market but I was interested to see how easy...

Hi I am originally from the UK but have been in the US for a couple of years where we are lucky to have great healthcare insurance and be close to a wonderful cf center. We have the option to move back to the UK (London) but I'm concerned that access to new drugs in the UK is somewhat difficult...

Thank you all for your ideas I think we will try the pep with our monkey and see how he does. I have just got out the documentation for our next visit and the compressor is actually 31lbs! The company will only reapply to the insurance company after 5 years and we have only had it for just over...

Hi all. We travel a lot and are looking for alternatives to the vest for our little one (3years). when it's both my husband and I travellibg its not such a problem but if I travel alone it me, two kids (twins) a stroller, 2x car seats, back pack of stuff and a 28lb compressor!!!!! Not a lot of...

We travel internationally every couple of months with our 2.5 year old CF son (twins one with one without!). My advice is call the airline before you fly and check with them that they will take the compressor. we had one airline try and refuse the compressor due to the weight and wanted proof it...

I agree call CHOP they were so helpful when we were in the first throws of diagnosis. The number is 2155903749 (this is the CF clinic number) tell them what is going on and I'm pretty sure they will contact your PCP to discuss. Don't wait it out

Thank you all so much for your replies and I will check out that website/dietician. It's a real comfort to know there are others going through/ gone through the same thing.