hello

[momtologan]

Hey everybody,
Just wanted to say Hi, My name is Karen and my son was just recently diagnosed with CF. He will be 5 In March of 2006. I have visited your site and can't wait to talk to some people about CF. This is all still so new to me. He is going to be Hospitalized for the first time next week ( IV Antibiotics for 3 weeks and go down with a camera and take a biopsy ). I am very nervous about this all and afraid of the outcome? Thanks for listening.
Karen

 

[LoveShines4Austin]

Karen,

I'm wishing you and Logan all the best. I'm new here too, and I have felt nothing but understanding and gotten everything I asked for - Answers to questions and major support! These are good people and I feel blessed to have stumbled across this forum.

 

[momtologan]

At what age was Austin diagnossed and how has he been form that point to now? When the Doctor told me that Logan tested Positive and he not only had two mutations he had three? And that out of the three two of them were unusual or rare are the words he used. Is that not normal to have three mutations, do you usually only have two ( one from each parent is how I understood it ). Not sure if you know the anwser to that or not. They have him on Pulmizyme, Saline spray, Vitamax, Flonaise, Advair, Albuterol ( Nebulizer ) and he does The Vest 2x a day. Is this all typical, do you know? Have to go, thanks for talking...
Karen<img src="i/expressions/heart.gif" border="0">

 

[daelwill]

Karen,

I'm glad they were able to diagnose your son before he got much older... if he is anything like other CF patients diagnosed a little later, he probably had many smaller problems or got sick often and they finally put it together to test for CF. My youngest son, Billy, has cf, diagnosed at 5 months old and he is not 10 and doing very well. He does many of the same things all of his friends do and lives life to the fullest.

The meds your son is on sounds pretty typical (I'm assuming with the flonase that he has had sinus problems)... The ivs should really help him if he has been sick. My son had gotten to a point where he wasn't gaining weight like he should then had to do ivs every six months- so far he has done 3 rounds in the last year and 4 months- he gained almost 20 pounds... and is very healthy looking and feels good. Has had very little problems with his sinus' also. He also does Tobi (inhaled antibiotic every other month), which has helped alot.

As for the 3 mutations... that is a little different- but not unheard of... I'm not the best explainer of the technical side of mutations... yes the child gets one mutation from each parent (even if one parent has CF- the child only gets one)... there are some mutations called stop mutations or something like partial mutations that have been linked to CF... and usually if the child has one mutation and a stop mutation on the side, he/she is considered a carrier... I may be off- it takes some studying to understand all that, but I have heard of others that have 3 mutations.

Take care...
Daelynn
mom of 3 boys (17,14 &10) youngest wcf

 

[anonymous]

Hi Karen,

I am new to all of this as well. My son is 3 mos old and was diagnosed at 3 weeks of age. He was just discharged from the hospital on 10/29 after 19 days of antibiotics. His upper lobe of his right lung collapsed and cultured for pseudomonas. He also had a bronchoscopy. I was a complete wreck!! But my son...he was a trooper! I guess this is all part of the hard knocks of life. My son is on some of the meds you mentioned but obviously not all of them because of his age. The hospital stays get a little monotonous-but modern medicine has come so far. I am so very thankful to the intelligence that has researched this disease. Please keep us posted with your son's outcome of the bronchoscopy.

Melissa
1 child-3mos old son