Looking for some CF info and contacts

Welcome Krista!

I would just like to give you a big hug ((((Krista)))for what you are going thru in feeling alone.  But, don't fret, we are here.    At the time of diagnosis, the grief pattern starts and we feel as tho as you mentioned, helpless.  This in time will get better, I promise you that!.  Ok!.

I would like to mention a few things.  First, the pseudomonas will probably be cleared with antibiotics and replaced with another bacteria (good or bad).  In everyone's life, not only CF'ers, carry some sort of bacterial flora.  This like to have killed my feelings when the docs told me the pseudomas was gone but now stalph and another bacteria has taken over.  The good news was...the two bacteria's were fighting one another to keep from colonizing.  When one bacteria colonizes, this causes symptoms.  If the active bacteria don't colonize (grow abundantly), then it's ok!.   

Second, let me say this...since Logan has a genetic mutation other than the "most common", I can't speak of his symptoms or know of anyone with his genetic type, but, it seems as tho, his mild symptoms are gonna be ok, we just never know what the future holds.  I keep telling myself, do the best we can and cross the bridge when we get to it.  Thats all we can do as parents. 

As far as medication regimine, it seems as tho he is on the right track so far.  Eating, well that will come around but will suggest, carnation instant breakfast to replace when he doesn't want to eat good.  It's a booster and it was recommended by the nutritionist at the CF center.  My twins went thru the same phase and eventually Logan will overcome it (we're hoping )

One last thing for now, there are alot of great people here on HW that lends a shoulder for anyone in need.  We are here for you.  Oh, yes, (tidbit info here) I wanted to mention this.  Our CF care center will not let us visit with other CF children due to a certain bacteria called B Cepacia.  So be careful that you don't get your children around other CF children if you want to meet other parents.  This bacteria is only transferable amongst CF children but NO antiobiotics will cure someone with CF if they were to get it. 

I hope this helps and we are all feeling scared for the future of our children, all we can do is pray that there is a cure soon and do the best we can to let them have a normal life as possible.

Hugs!

Hi Krista,

It's a good idea to talk with the CF doctor to help you feel better.  They can make you understand.  Let me try to explain again.

Every year at the annual visit, your son Logan will get a throat culture done to see what bacteria is growing.  Therefore, they can treat him incase he has a lung infection in the future, pseudomonas or otherwise. 

I asked the docs, why do we have to culture every year? (the docs now recommend at every visit, per 3 months, to catch a bacteria colonization early).  His response:  culturing every year, will allow us to properly treat your children with the correct antibiotics.  Secondly, it will catch colonization (overgrowth) of a active bacterial infection, such as pseudomonas or other bacteria growing in the lungs.  Third, even tho my kids grow staph and other bacteria together, it does not mean that its bad for them.  It can be bad if colonization occurs requiring medication to be administered.  Once medication is administered for that particular bacteria, things are better. 

Hope this helps