Looking for some CF info and contacts

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Logansmom919
New Member


Date Joined Oct 2005
Total Posts : 6
   Posted 10/13/2005 4:38 PM (GMT -7)   
Hi
 
My name is Krista.  My son, Logan was diagnosed at 2.  He just turned three.  I was watching a film in Biology class about Gene Disorders.  I immediately came home and called my doctor and requested a sweat test.  He was being treated for asthma but I knew deep down there was something else wrong.  I thank God I didn't miss class that day.  I have read so many cases were children are diagnosed so late.  If I didn't see that film I do not believe he would be diagnosed today.  The doctors have said he has a "mild case". Whatever that means.  He is actually receiving antiboitics at home now because he had a positive throat culture for psuedomonas.  We only spent two days in the hospital.  They say the antiboitics should kill it off and he will be ok.  If anyone can help me with additional info about this, please write me.  Like I said, this is his first major illness associated to the CF.  I read terrible things about liver and lung transplants for young children.  I feel for these families.  I know how hard it is to live with this diease.  Sometimes I feel so afraid and helpless.  I think of the future and what it holds for my son. 
 
He is growing ok, not too small, but he is giving me a problem eating recently.  I would like to know about the medications other CFers are taking.  Logan is only taking albuterol before his chest therapy twice a day, enzymes and vitamins.  I want to make sure he is getting all the medications he needs, even if insurance won't cover it.  He has the G551D and N1303K mutations.  If anyone or any parent's child has this combo please email me.  I know everyone is different but perhaps the combos are at least a little similar. 
 
I would also like to know about any groups in North Carolina.  I live in Boone and there is really nothing here and no one I can talk too.  I am pretty much alone in this. I do speak to one lovely lady named Evelyn in PA.  She has given me alot of info and encoragement.
 
God Bless you all and let's Fight for the Cure!
 
Thank you for reading this and taking the time to listen to my story. 
Please email me at Logansmom1019@yahoo.com.  With any info or just to talk, it is nice to have someone that can relate to you. 

Twinstride
Regular Member


Date Joined Sep 2005
Total Posts : 318
   Posted 10/13/2005 5:43 PM (GMT -7)   

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.  tongue   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 yeah )

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!


Kathy, mom to identical twin boys with CF (9yrs), daughter 20, grandaughter 2 1/2, one on the way!
 
Moderator, Cystic Fibrosis. 

If there is a CURE for Cystic Fibrosis this very moment and this is "not soon enough"...you would hear this twins mom "Across America" "YESSSSSSSSSS"!!.


Logansmom919
New Member


Date Joined Oct 2005
Total Posts : 6
   Posted 10/13/2005 6:22 PM (GMT -7)   
Kathy,

Is this always the case? My doctor has not told me anything about this, that there would be another bacteria once the pseudomonas are cleared. Also, do these bacterias cause lung disease?

Thanks,
Krista :(

Twinstride
Regular Member


Date Joined Sep 2005
Total Posts : 318
   Posted 10/14/2005 6:56 AM (GMT -7)   

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


Kathy, mom to identical twin boys with CF (9yrs), daughter 20, grandaughter 2 1/2, one on the way!
 
Moderator, Cystic Fibrosis. 

If there is a CURE for Cystic Fibrosis this very moment and this is "not soon enough"...you would hear this twins mom "Across America" "YESSSSSSSSSS"!!.


Twinstride
Regular Member


Date Joined Sep 2005
Total Posts : 318
   Posted 10/14/2005 7:12 AM (GMT -7)   
Krista,

I would also like to add...no matter what pulmonary doc Logan see's they should all have the same info for parents.

The doctor that takes care of my boys is a lung transplant coordinator, who is starting a lung transplant program at CF centers all over the states. He is beginning to be a very popular man these days. Not that my boys need a lung transplant right now, but, for the future it might be good!. lol.
Kathy, mom to identical twin boys with CF (9yrs), daughter 20, grandaughter 2 1/2, one on the way!
 
Moderator, Cystic Fibrosis. 

If there is a CURE for Cystic Fibrosis this very moment and this is "not soon enough"...you would hear this twins mom "Across America" "YESSSSSSSSSS"!!.


Logansmom919
New Member


Date Joined Oct 2005
Total Posts : 6
   Posted 10/14/2005 7:52 AM (GMT -7)   
Kathy,

What state are you located in? If you dont mind saying. I am in NC but I was planning on moving back to NY. I will probably go upstate because I feel Logan got sick during our visit to NYCity this summer. He had been fine until then.

Krista

Twinstride
Regular Member


Date Joined Sep 2005
Total Posts : 318
   Posted 10/14/2005 11:04 AM (GMT -7)   

Hi Krista,

I live in Houston Texas.  Living here is so hard on my kids during this time of the year.  Texas get's hot and humid also.  One day it's hot, the next day it's cool.  It's always changing here.  lol.

ta ta for now


Kathy, mom to identical twin boys with CF (9yrs), daughter 20, grandaughter 2 1/2, one on the way!
 
Moderator, Cystic Fibrosis. 

If there is a CURE for Cystic Fibrosis this very moment and this is "not soon enough"...you would hear this twins mom "Across America" "YESSSSSSSSSS"!!.


Sylvanis
New Member


Date Joined Oct 2005
Total Posts : 7
   Posted 10/14/2005 2:17 PM (GMT -7)   
Hi Krista

You are saying your son has problems eating, do you mean he is just picky or doesn't have the desire to eat? My sister loved salty food, and they were good for her. She loved Bits and Bites. She snacked a lot, didn't entirely eat all that healthy, but I know the dr's said eating salty foods were good for her. Hope that helps.

-Angela

Logansmom919
New Member


Date Joined Oct 2005
Total Posts : 6
   Posted 10/14/2005 2:54 PM (GMT -7)   
Angela,

He is a picky eater but he also has a weak appetite. The doctor says its the toddler stage. He has no problem eating snacks like pretzels, cheese and crackers or icees! :)

Krista

Twinstride
Regular Member


Date Joined Sep 2005
Total Posts : 318
   Posted 10/15/2005 3:15 PM (GMT -7)   
Krista!

Good for Logan! yessssssss!. I do agree it's the toddler stage and boy, when he gets out of that toddler stage, look out!. Can't keep the pantry full enough...lol.
Kathy, mom to identical twin boys with CF (9yrs), daughter 20, grandaughter 2 1/2, one on the way!
 
Moderator, Cystic Fibrosis. 

If there is a CURE for Cystic Fibrosis this very moment and this is "not soon enough"...you would hear this twins mom "Across America" "YESSSSSSSSSS"!!.

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