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I know it has been a while since this thread was started but i just found it today and need to post.

1. I am so glad to see that I am not alone in this journey of understanding what is going on with my child.

2. a little background: My son is five. We have been struggling through ear infections, reflux issues, 2 summers of pneumonia with one landing him in the hospital for a month and chronic sinus infections and respiratory infections.

Last winter his pediatrician sent him for his second CF sweat test which came up negative(he doesn'thave it) but he also had a genetic test which reveiled that he is a carrier or has the M470v gene. To be honest i am not really sure exactly how to say it even though we have known for a year. At that time the best she could tell me was that there is no cure, and maybe in his lifetime there would be, and that this doesn't mean that he will for certain pass CF on to his children if he marries a girl with the same genetic issue.

And that is pretty much all i got from her on that. Any other info i have is based purely on my own research. WHich lead me here.

Kiddo just finished up 60 day sof antibiotics...3 rounds of 20 days...he has done 20 day rounds since his hospitalization two summers ago. This is our norm now. He has been off for a week and is starting to cough again.

To make things more difficult, his father and i are divorced and his father's side of the family thinks I am being over protective and that kiddo just gets colds because "that is what kids do." So not only do I struggle with the "what ifs" of his health issues, I live in fear that his father's family will not take care of him properly because of ignorance, despite trying to educate them otherwise.

I am so glad to find this thread and forum. I needed to read about some of the things you guys are trying for your children and i think i have some more questions for my own doctor now.

I knew nothing about 7t and 5t before and plan to figure this out...

Currently, the approach i have taken is to have kiddo on a diet which would be best suited for children with full-blown CF.
He also does albuterol breathing treatments with a steroid chaser, singulair, Flonase, Dimetapp, Guafinesin, daily vitamins, he no longer drinks regular milk or eats dairy products, he takes karate for extra exercise once a week, and in the summer we swim daily. He just got a new bike and according to his father, got winded easily while riding it. We also use a air purifier and fight a constant battle with dust.
Kiddo has also learned to use antibacterial handgel every timehe sees it.In fact it is because of this that i use this in my own classroom on adaily basis and other teachers have started thsi as well on my campus. His own kindergarten teacher already does htis on her own, and we regularly send extra handgel to class to help fight the good fight.

The pediatrician asked if any other members of my family had the same issues, and from what we can tell it is possible that my father did. From the stories my grandmother told me and various issues my father has we are peicing this together. When we realized this the pediatrician said," well at least we know there is hope for a long productive life, since your father is still alive." This statement has been haunting me for months now. It is an issue i have not wanted to think about since kiddo was in the hospital a few years ago.

He in fact does have many of the CF symptoms. But now i am wondering, about the emzymes and what does that do exactly?

And oral anitbiotics? What would those be for and how much of a difference do they make?

I have so much to figure out.

Thank you again for this forum.

I would love to know exactly what others do that seem to help them as well.





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