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Thread: Possible CF for me and my son?

  1. #1
    Junior Member
    Join Date
    Dec 2018
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    1

    Possible CF for me and my son?

    Hi! I am 28 years old and gave birth to my son 3.5 months ago. We do not have a newborn screening here. He is a rapid breather, I noticed it after a cold at age 1 month. Sometimes his respiratory rate gets to 80-100 but mostly falls just above 60 when he is awake, but perfectly normal while sleeping. At 3 months after a runny nose (cold he got from me) he developed cough. Blood work was fine but xray showed obstructive bronchitis. He was started on nebuliser Salbutamol + Pulmicort along with sodium chloride. 1 week on treatment he still has a lot of mucous and coughs still. It is all very normal for a normal bronchitis. But I kissed his feet and they were very salty, same for his hands and sometimes hairline. I told it to his doctor and he got referred to a pulmonologyst. We see him next week. Before that doctors did not have any concerns about my son about possible CF because he is thriving, reaching developmental milestones, eating well and is in 67th percentile of weight and 99th of height. No gastrointestinal issues apart from regular gas almost every baby has. Routine abdominal ultrasound - normal.

    Then I remembered that I know this taste. When I was a child I used to lick and suck on my fingers and palms (and toes and feet for that matter!) on a regular basis because I loved the salty taste of pretzels or Pringles they were like. I never knew it was abnormal. I tasted my hands now and surely they are Pringles-like. As I said, I am 28 years old and, for most of the time, healthy but I do have some chronic issues. Even as a small child I had numerous bronchitis and pneumonias after colds. Few times these pneumonias almost had me killed. At 3 years old I was hospitalized for a month as one of my lungs failed to function but luckily I was saved and so was my lung. Second worst time was 9 years ago when I also almost died due to pneumonia. Other ones have been milder, including one 1.5 years ago. Now I too have developed a wet cough following the runny nose I had. I always just thought that airways are my weak point. I have no gastrointestinal issues and am normal height (even tall) and weight. I do have chronic sinus issues, nasal polyp, non-stop post nasal drip, and shortness of breath (gradually worsening over time, like now.. not really having exercised since I got pregnant a year ago). Can't even blow up a balloon. Considering all this I still think of me as quite healthy.

    Does this sound of some kind of atypical/mild CF mutation? I have read about cases being diagnosed later in life. I will ask if I could get tested too since I have been having very salty skin since I was a kid.

    My question is - if they do diagnose me with mild/atypical CF form, would it be the same for my son? Given the fact that he is doing well in growth and GI department? If I hadn't brought up salty skin issue he wouldn't get tested for CF for sure as what he has is nothing too bad, they said. No need to be hospitalized and his oxygen level was 96 (they said it's normal with bronchitis). No infection = CRP was 0.0 and WBC 7.51. No fever. Just a viral bronchitis, they said.


    Or are there any other reasons why both of us taste like salty pretzels? I actually asked my sister to taste her children and she said no salty taste but they do get frequent bronchitis too.

  2. #2
    Senior Member
    Join Date
    Apr 2007
    Posts
    4,306
    Probably best to get a sweat test and/or genetic test done if you're concerned about either of you having CF. I was very concerned that my biological son might have CF after he was born, because he was always sick as a child. So I had him Ambry tested just to make sure - and luckily he only had my one DF508 gene, so no CF. I think it would give you peace of mind if you found a doctor who is willing to have you both tested.
    37 w/CF
    DDF508
    Mom to 2 boys

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