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Thread: anyone heard of this weird bacteria that is affecting my son?????

  1. #1
    mumof1
    Guest

    Question anyone heard of this weird bacteria that is affecting my son?????

    Hi cf community
    My son jareth is currently in hospital in victoria, australia with the strangest infection. It has reduced his FEV1 to 57% and he feels congested but unable to cough it out.
    It's sphingomonus paucimobilas.
    Has anyone had it before? Did it take long to recover?
    mumof1.

  2. #2
    Quote Originally Posted by mumof1 View Post
    Hi cf community
    My son jareth is currently in hospital in victoria, australia with the strangest infection. It has reduced his FEV1 to 57% and he feels congested but unable to cough it out.
    It's sphingomonus paucimobilas.
    Has anyone had it before? Did it take long to recover?
    mumof1.


    Sorry, never heard of this infection. You may try and and contact the CF foundation in the US, the guy to ask is Dr. Bruce Marshal. Hope they have your son on something to loosen up the mucus. Does Oz have a CF clearing house for information? I know Sydney has a good Transplant center, I have their information when I have traveled down under. They likely deal with strange infections and may have experience with this bacteria.

    CF TX 63 cepacia 13 years out

  3. #3
    mumof1
    Guest
    Hi thanks for the reply, cf transplant
    He is having a tune up with tobramycin which a scientist friend of mine says is the right treatment for this "uncommon gram negative bacilli" Its just that we've never come across it before and usually nothing at all grows from his sputum. I am confident that he will recover but it may take 2 weeks rather than the usual 7-10 days. What is a cf clearing house?
    mumof1

  4. #4
    The CF foundation has some groups that have expertise in different issues of CF. You may have a national CF group in Oz that have CF doctors at the larger hospitals that specialize in CF patients and would know about common infections. I have taken "tobi" may times, both IV and inhaled. It can impact hearing. The CF foundation has and funds people with trials (drugs and others), that frequently know about infections and these issues. They sometimes act as a reference center or "clearing house" for information.

  5. #5
    This is the good post and i feel bad to hear about your son , everybody knows that fev1 and feeling congesting they are symptoms of a strong bacteria , i have a little bit idea about it that they must feel difficulty in their lungs so they can not relieve .it may be lead to COPD they are small bacteria i think so that enter through air to lungs in human body .as a medical student i have to visit this'' website'' for more information.

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