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Hello Friends! Well...we have gotten some bad news today. My sixteen-year-old daughter is now culturing Myco Abscessus. I am actually not that surprised about it given her recent months of relentless fatigue and night sweats. So now we go back to the infectious disease doctor to get his...

I want to send my encouragement your way as well. My Autistic (now 20, no CF) son has an awful time whenever he gets a cough. It really bothers him, and I cannot imagine him being my CF child with his sensory issues. I have to second the opinion of LittleLab with the Tussionex. It's a real...

Hello Jeana Lynn, My daughter (now 16) has had a lot of issues with hemoptysis. I was at my wits end about a year ago when I read something about birth control pills helping some CF females with this issue. I started to observe that yes, in fact my daughter DID have more frequent episodes...

Imogene--wow and super WOW--I think it's incredible that you have these connnections with medical personnel and pharmaceutical companies. Thank you so much for putting my concerns out there so the people creating these clinical trials get a clearer understanding of the patients' point of view...

I do believe it is a CF-related phenomenon. My daughter sweats a lot during sleep. Since infancy her head was soaked in sweat and her pajamas were all wet in the morning. When I nursed her as a baby she would fall asleep on me and almost instantly she would start to sweat. We lived in Alaska at...

HI Jade! I want to reply to your question because I see this thread is a little "older" so the traffic is less lately. I use 2-3 drops of oil on my daughter's feet. Cinnamon bark or Cassia is a great oil but it's "hot" so for this I also put some coconut oil on her first--and only on her feet...

I am very sorry to hear about your new port problems Kenna2. That's scary! My daughter recently had a port placed (Nov) and it is not a power port. So far we haven't had any problems. I'm not sure why the surgeon chose the type of port he did--it wasn't discussed with us. However, I am glad she...

Thanks for the kind words everyone! Jricci--the coordinator said phase one is for 18 years and up--the next phase is for 12 and up. It's good to hear that you haven't had any issues with the IUD, and that you have had one for a while. What you (and kenna2) wrote about the lowered effectiveness...

Hello Friends! So I did find out from a second center in another state that the IUD is what they will be requiring for any menstruating females. At least, that is the current plan for the triple combos. Even if you are not sexually active AT ALL--it's required. Probably on the slim chance...

This is mostly a vent... I have been trying to get my daughter into a clinical trial for one of the CFTR modulators for a while. For different reasons she hasn't been eligible--wrong mutations, too young, etc. Well, yesterday I contacted a few centers around the country about the Vertex...

Jricci: thanks bunches for the posts about ports and the Vest. It was exactly what I was looking for, and I appreciate your help! Mom2two: your question about low FEV and PEP devices is a valid one for sure. Unfortunately, I'm not sure of the answer for you, but I completely understand your...

Hi Gammaw! I am going to provide a link where you can watch the Aerobika being used with or without the neb attached. It explains it with the nebulizer attached about halfway through the video. They also show it with "their" neb cup and compressor. I have used the regular Pari ones with...

Hello and Happy 2017! I recently purchased an Aerobika for my daughter. She also has the Vest and an Acapella. I noticed that recently Victoria wasn't using her Vest as much so I wanted to find another CPT option. What I love about the Aerobika is that we can use it during her albuterol...

I so so so so so wish my daughter was old enough for this study!!! Hopefully soon we can try this drug combo. :) Michelle Mom to Victoria (15) Thanks bunches for sharing this information!!

Have you looked at a sewing supplies bag? I have a large one that has lots of straps and compartments to hold my sewing needs. Mine has a stackable plastic organizer inside. When we fly I like the Vest rolling luggage--I put her feeding pump in one end and her Pari compressor in the other end...

Hi there! Thanks for the support! So far I was told that the new triple drug would be in clinical testing for patients over 18 first. That means that for now we have to wait a bit longer. In the meantime my daughter got a port, and she is healing well from that. We are still hopeful that...

Hello Friends ! I have a question about the safety of fog machines. Are they a threat to our CFers? Every Fall season it seems they are in haunted houses, outdoor festivals, concerts, skating rinks, etc. I am anxious about what my daughter is breathing in when we are trying to enjoy this...