Search results

Thanks Jaimers for the testimonial. The whole30's a paleo offshoot. Perhaps I could try paleo without the whole30 restrictions first for a couple of months to get things rolling. My DDs are also on the cusp of CFRD based on glucose tolerance tests. The CF doc says it's not a matter of if, but...

Over the years, the CF Foundation has recommended stricter and stricter infection control protocols. I remember when my DD was first diagnosed as a baby 19 years ago, the CF teens would schedule their hospital tune ups at the same time so they could socialize and hang out in groups (a certified...

So sorry for what you are going through. It's heartbreakingly hard to see little ones sick like this. Please consider insisting on the sweat test AND FULL CF gene sequencing NOW. I'm surprised they would not have done the sweat test at a minimum. I'm going to channel a fellow forum member...

I've been reading about the Whole30 diet/approach to eating (http://whole30.com/whole30-program-rules/ and in the book, "It Starts With Food") and could not find a thread on this forum. Whether based on food sensitivities, overactive immune systems, etc., inflammation is a true enemy for the...

2005CFmom, Please research dropping your husband's insurance as I'm pretty sure that if his workplace offers insurance, you cannot qualify for obamacare.

We don't have HBO and I can only find a few brief clips on you tube. ... :(... I hope HBO will make this available. I heard it was a great piece. The clip I saw with Boomer talking about when Gunnar was finally diagnosed sure brought me back when we got our dx. I hope to see the whole thing!

Please consider going back to your CF team and insist they treat the possible PA aggressively. I would not accept a 9yo with a new baseline that has dropped that much. He is too young. What I mean by aggressive is IV antibiotics that have been tested on a sputum culture as effective against what...

My 15 year old DD got the Nissen fundo when she was 7. VERY small scars. You can hardly see them. She had horrible nausea and retching problems post-surgery though and couldn't eat for a long time. It was a nightmare, but apparently very rare. She had to go on TPN and lipids for 3 months until...

My two DDs (age 20 and 15) with G551D (for one of their CF genes), have been on Kalydeco since its FDA approval 2/2011. I keep reading about how some people stop enzymes, stop/back off on respiratory treatments, etc., but that has not been our experience. Both girls have been significantly more...

CF or not, I think it's best to be with your loved one in the hospital to advocate. I have experienced many of the same negative experiences as the above posts. With my CF kids at a good CF Care Center, with my dad at another hospital, and my mother in law at yet another hospital. Wrong med...

My DD had a similar reaction -- at a reputable CF Care Center -- to what I believed to be the abx. The docs weren't buying it, and the rash worsened and sporadic high fevers persisted. They even resorted to a cooling blanket to bring her temp down. It was 7 years ago and I can't recall the drug...

Please consider doing the Albuterol or Xopenex via nebulizer (my DD uses the Xop bc she is jittery on Albuterol). The nebs work so much better than inhalers for my two DDs. When they are sick it can be hard to take the full breaths needed w/a puffer w/out coughing. Nebs have been our standard...

Go Martha! So glad you are on Kalydeco!!! Thank you for your detailed explanation above. Has Kevin started yet? Please keep us posted on how you two are doing (well three with your other brother:). Thoughts and prayers your way! My two daughters (20 and 14) have one G551D, which immediately...

I just want to weigh in on the difference between the neti-pot and the bottle. The 'Sinus Rinse' squeeze bottle (by Neil Med) uses positive pressure to flush the sinuses vs the neti-pot, which is a much milder rinse. I suggest you give the bottle a try, which may be more effective at dislodging...

I've heard pregnant moms should not be in the room when TOBI is nebulized.

Great idea, Lance. The more ink on this issue the better! I hope you get a solid response. I just posted a thread for Sarah too, asking for people to sign an online petition, which is up to 91,000 signatures as of this post...

Am posting this in both the family and adult forums. Please read the below article excerpt and consider signing the online petition and personally calling or emailing Katheen Sebelius at HHS ... and using social media to get the word out to everyone you know. Time is running out for this poor...

Am posting this in both the family and adult forums. Please read the below article excerpt and consider signing the online petition and personally calling or emailing Katheen Sebelius at HHS ... and using social media to get the word out to everyone you know. Time is running out for this poor...

Do you all think that reverse osmosis water (not sterile but should be 'clean') is okay for sinus rinses?

I am ignorant on diabetes and tube feeding, but are there no diabetes-friendly formulas??