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

M

mumof1

Guest
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.
 

cftransplant

New member
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
 
M

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
 

cftransplant

New member
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.
 
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