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mommyscfboy
New Member


Date Joined Jan 2008
Total Posts : 2
   Posted 1/28/2008 12:13 PM (GMT -7)   
Hi, was just wondering if someone could answer a question for me? My son,who will be  2 in a couple days,has nonmucoid pseudomonas. we found out he had them right after his 1st birthday, he went in the hospital for 2 weeks to get antibiotic treatment to try to get rid of them,it worked for a couple of months and came back, after that we did a couple rounds of Tobi and cipro they came back,the Dr. then told us he would just have to live with them. Well a couple of days ago I was talking with a lady who said they can almost always can get the nonmucoid pseudomonas to go away that the dr. just wasn't aggressive enough What is the difference between mucoid and nonmucoid pseudomonas??? Does anyone know something else we could try???
                                                  THANKS

Gemsi
Forum Moderator


Date Joined Feb 2007
Total Posts : 1050
   Posted 1/29/2008 8:13 AM (GMT -7)   
Hi there,
I have an inkling what might be the difference between mucoid and non-mucoid pseudomonas, but don't want too give you any false information with what they mean. Doing a quick search unfortuantely, just brings up a load of sciency rubbish that I can't get my head round.

If I was in your situation, I wouldn't be happy with the doctors explanation.
I once read somewhere, that pseudomonas does have to adapt too grow in CF lungs. I'm not sure how reliable that is, but it was a doctor who once told me, as I was really panicking about the fact that psuedo is everywhere.

In the UK, when you first get pseudo, you are tested every 3 months, for a year. I kept getting put on 3 months of nebulised Tobi, then did a cough swab, and if it came back clear, I stopped Tobi, if not I carried on. Pseudo can usualy be eradicated completely in the first year of growing it in your sputum, after that I think it's a little harder.

Usually, if nebulised Tobi doesn't work, then nebulised colomycin (aka colistin/promixin) is a good try. Mainly because if you're unreceptive too one, it's likely your probably receptive too the other.
What I really don't get is the Doctor's comment (although I don't get most doctor's anyway, they say weird things). It's not a full year yet, so there is still a chance too get rid of the pseudomonas. Can I just ask, is your doctor a specialised one or just a paediatrician. When I was little, I had a paed chest doc, who's answer too anything was cough drops, honey flavoured ones too be exact, never a mention of antibiotics, or even extra physio therapy, even when I grew Staph Aureas.

The only trouble is, is that I'm not sure of the ages things can be started on, and for doses and meds that your son will be able too take, will be reliant on knowledge that only doctors hold.

All I can suggest is, again speak too your paediatrician, explain your concerns, and demand an explanation back about his decision.
I personally don't think psuedo should ever be left untreated, especialy in the early stages. Though, that is generallised view, not knowing what mucoid means.

There are different strains of pseudo, and some that are more virulant than others. Maybe it is just a weak type that won't effect your son.

Hope you are keeping well, and hope you get a better explanation soon
Gem
Co-moderator in the: Cystic Fibrosis Forums
 Diagnosed with: Cystic Fibrosis, Asthma, ABPA, Clinical Depression, Mild Liver Cirrohsis, Mild Osteopenia, Erythema Nodosum. Waiting for final diagnosis on Muscular Dystrophy type symptoms.
 Medication: Creon 10,000, Flucloxacillin, Vitamins A,D+E, Serevent, Salbutamol, Paracetamol, Ondansetron, Nefopam, Ursodeoxycholic Acid, Saline neb/PEP system, Mirtazapine,slow-sodium, Skandishake and Fresubin.
Had a Port-a-cath fitted on chest wall since Nov 05
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mommyscfboy
New Member


Date Joined Jan 2008
Total Posts : 2
   Posted 1/29/2008 11:08 AM (GMT -7)   
Thank you for responding!! My son sees a cf specialist but we are looking for a new one at the moment,he can never give us answers to what were looking for. Thanks again!!

Gemsi
Forum Moderator


Date Joined Feb 2007
Total Posts : 1050
   Posted 1/29/2008 12:08 PM (GMT -7)   
Oh, while I'm thinking of these things. One thing you could try is asking for a letter or something. I tend to get them now and again, if my doctor's have told me something complicated. Mainly because they know I'l only whinge at them later if they forget stuff they've told me. I usually get a copy of the letter that they send too my GP and every other doctor I'm under.
I'm not sure if they have too do this, it's just I asked my docs one time, after I was going home confused and then getting wound up. It would always be worth asking, and it's something you can ask for politley and don't have to demand either.
 
Good luck in finding a new doc. Not every doc suits every patients needs, so if that's the case, it is best you move onto another doc, as they might just be the one who can understand what you need, and how detailed to go into things.
 
Gem
Co-moderator in the: Cystic Fibrosis Forums
 Diagnosed with: Cystic Fibrosis, Asthma, ABPA, Clinical Depression, Mild Liver Cirrohsis, Mild Osteopenia, Erythema Nodosum. Waiting for final diagnosis on Muscular Dystrophy type symptoms.
 Medication: Creon 10,000, Flucloxacillin, Vitamins A,D+E, Serevent, Salbutamol, Paracetamol, Ondansetron, Nefopam, Ursodeoxycholic Acid, Saline neb/PEP system, Mirtazapine,slow-sodium, Skandishake and Fresubin.
Had a Port-a-cath fitted on chest wall since Nov 05
Help support the forums so we can support you:  http://www.healingwell.com/donate
 

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