New member and recurring staph?

clairebells · Dec 6, 2005

Hi all,

I finally joined after reading here for months....it's a great place to come for info and support, especially if you don't know any other CF families (we don't).

We have a sweet little four year old girl (Chrissy) with CF (diagnosed at 1 month due to severe malabsorption) and a healthy happy 6 year old girl. Chrissy is double deltaF508, pancreatic insufficient, nasal polyps, prone to intestinal blockages, reflux, coughs a lot etc. She has cultured lots of different bugs necessitating antibiotics (no pseudomonas yet). She gets staph aureus infections a LOT - like six times or so a year the last couple of years. And she gets tired with it, coughs a lot, coughs stuff up periodically etc. One of her antibiotics (Septra) no longer works for the staph, so she's on Keflex now.....seemed to work at first, now she's coughing again - aaarrrggghh! The thing is, even if the culture she had done at the CF clinic last week comes back clear (doubt it!), if she gets a cold after finishing these ABs, you can be sure the staph will be back.

So my question to all of you is, Does anyone have a problem like this with chronic staph? I worry that if she is having this much trouble with staph, then I don't want to imagine pseudomonas! Also, I know it's hard to categorize (and I can never get a straight answer from our CF clinic!) but does it sound to you like she is mild, moderate, or severe?? She is on ten different medications. If I had to guess I'd say moderate?

Anyway my best to all of you affected by this devastating disease, and thank you in advance for your input.

Jenny (mom to Chrissy 4 w/CF)

Faust · Dec 7, 2005

Thankfully I never had any real recurring staph infections so i'm not the one to ask. 10 medicines does sound steep though.

anonymous · Dec 7, 2005

My 4 yr old has cultured staph but she never has infections with it. Wonder why it affects people differently?

julie · Dec 7, 2005

Is you daughter on any nebulized medications, such as TOBI? I would imagine that would be the next step.

anonymous · Dec 7, 2005

Hi, yes she is on nebulized albuterol and pulmicort. I believe they only start TOBI when pseudomonas is cultured. But maybe there are other nebulized antibiotics? That's a good idea to ask her pediatrician about..... she has had so much oral ABs I'm getting concerned about resistance; and the nebulized ones are more local.

Marjolein · Dec 7, 2005

Overhere we have an antibiotic called Flucloxaciline that works really well for me, I take that all the time since i first got Staph and it didn't get back again. I know more people in the Netherlands who get it. And i'm a member of an English board and i know there are a lot of people there (including small children) who get Flucloxaciline.

You could ask your doctor about it.

WELCOME TO THE BOARDS!

Marjolein · Dec 7, 2005

I think you don't have to worry about resistance for Flucloxaciline. I have been taking it for as long as i can remember and i have heard of someone a few days ago who has 3000 mg everyday for the last 26 years..

JazzysMom · Dec 7, 2005

I must be an odd ball. I continuously show staph & pseudomonas. I have never erradicated it from me. I have slowed it down, kept it under control & kept an eye on it. I havent always been on antibiotics for them. It seems now a days I am always on something, but in my earlier days I didnt take antibiotics until there was an active "infection" with the change in cough, sputum color etc. Are they trying to rid her of it completely or keep it from becoming an infection? I believe the way my doctor handles it has made me less resistant to many meds & overall has kept my health well. Most of my problems have been from my lack of self care. Just wondering about your daughter since she is so young. As far as the severity....people or at least CFers classify it in different ways. Some base it on the health situation at the time & some base it on the lung damage done that is no reversable. I personally base in on the lung damage because a situation is often reversable. However there is no REAL way to gage it since it changes almost daily & from person to person.

clairebells · Dec 7, 2005

Hi and thanks for your ideas everyone.....it means a lot to me just to be able to share this stuff with people who know what I'm talking about....

I will find out about the fluoxacillin; maybe it goes by a diff. name in North America??
Jazzysmom, yes she does get sick with staph (as in infection) - coughs up greenish stuff, tired, low exercise tolerance etc., not feeling well etc. When she first starting colonizing low numbers of it it didn't bother her as much, now it does. They have cleared her of it numerous times before, but it always comes back, esp. after a cold etc. I read that many years ago most small children w/CF died from staph infections, before better antibiotics were available. Strange how people are affected so differently, isn't it? I've been reading about modifier genes, seems like that might have a lot to do with it.

take care,

Jenny (mom to Chrissy 4 w/CF)

anonymous · Dec 7, 2005

Hailey has cultured Staph since birth along with a few others. The staph dosen't seem to affect her. She has been on antibiotics(Omnicef and Septra) for cough since July. They just started her on Flovent and Albuterol inhalers ans she seems much better than last month. I know what you mean about the medications. Hailey is currently on 6 ans the Dr's say she is doing good. I hate to see what it will be like when she isin't good.

Marjolein · Dec 7, 2005

I don't know if it goes by another name in the US, sorry.. But i think the doc must know it.

Take care, good luck!

anonymous · Dec 20, 2005

Hi there - this is an interesting one, because i recently found out that of all the bugs i have cultured or had active infections from over the years - it appears to be the staph that makes me feel the worst!! I believe staph is usually the first bug we tend to culture and the most often - then pseudonomas (someone please correct me if i'm wrong here, but from my research this is what i've worked out). Now although pseudonomas and cepacia are given the worst repututaion for the damage they do to the lungs (unless you culture MRSA, which is another story again) - when i am just culturing cepacia (as I normally do) i feel pretty good generally, energy and appetite pretty good, generally not anything much to worry about except slightly icky looking flem. However, when i started to culture staph for the first time in a long time just recently - i felt like utter crap!!! (plse excuse the language but that's the only way i can describe it). I had zero appetite, no energy, hot flushes etc and my cf nurse cheerily said 'oh that'll be the staph'....................this may have something to do with why your daughter feels so bad when culturing this otherwise not too serious bug. So I guess on the positive side, if and when she does start to culture other bugs such as pseudonomas, she may not actually feel any worse on a day to day basis, however if you can successfully get rid of the staph, even if she does culture other bugs, she may start to feel an awful lot better.
I'm rambling, but i hope this is of some use to you. BTW - if you are interested i do use a natural therapy which seems to stop me from culturing both staph and pseudonomas without the assistance of a nebuliser or antibiotics - let me know if you want to know more.
Kat (37 with CF - NZ)

JennifersHope · Dec 20, 2005

I have cultured MRSA which is staph that has become resistant to methicillian antibiotiocs.. hence the name.. They believe that I have had staph a lot when I was younger.. I was sick a lot as a child and younger adult... but never had sputum cultures because I was not diagnoised yet..

The thing that worked for the MRSA is Zyvox IV. I know it is very expensive, (I am used to extremely high hospital bills but this price was insane) but maybe if they just put her on a course of IVS that will knock it out once in for all.......

I agree that the MRSA which is an advanced stage of staph, made me feel so sick.. I spent almost the entire semester (September up until very recently) being pretty sick... I was so tired, weak, and feverish....I still have to get a lot of rest or I feel like crapolla..

I do know that many ppl can colonize bugs and they don't need to be treated unles they become sympotmatic. I don't think that ten meds are so much but I do think 6 antibiotics is a lot to do... I have been on the most 4... not including inhaled.. Also I guess it is different with each clinic.. but I though most ppl went on Tobi inhaled as a preventative.. ( I am currently on it and don't culture pseduo on a reg basis)

Good luck.. and welcome....

Jennifer

anonymous · Dec 20, 2005

Hello Jenny and wecome to the forum, I have the same CF symptoms as Chrissy, but in more recent years have been managing cepacia and type 2 diabetes. Fortunately, pseudomonas are keeping their distance, reckon the old lungs have enough to cope with<img src="i/expressions/face-icon-small-smile.gif" border="0"> Since I cultured cepacia {about 8yrs.ago} my chest specialist has introduced 4 flucloxacillin daily on a permanent basis to try and keep the Staph. aureus controlled. When another 'nasty' rears its ugly head, I take a secondary course of oral A/Bs depending on what sensitivities are showing in the culture reports. At the moment I'm on 8 A/Bs daily over the next 2weeks to combat an additional infection, haemophilus parainfluenzae to keep company with the usual S/A and cepacia..... Would be so nice to have a cough-free Christmas dinner, but what the heck...our family is so used to me excusing myself to go cross my legs, it just comes with the trimmings......
I can understand Chrissy's constant cough is not the best music in the house<img src="i/expressions/face-icon-small-wink.gif" border="0">, it sure is an energy drainer! As many others have said, there are hard to understand variations to CF, it's certainly a gene thing!! My rule of thumb in the past has been, if the infection is not clearing up after 2-3weeks of extra oral A/Bs, a hosp. visit and subsequent IV treatment does the job. There's really no way I can fathom Chrissy's severity, but hope she has a wonderful Christmas.

All the best to you and your family.

Eileen. <img src="i/expressions/sun.gif" border="0">

anonymous · Dec 20, 2005

Hello Kat, I have just read your letter with interest, would it be poss. to forward details of the natural therapy to me: iswag1@xtra.co.nz
Thanks. It's nice to see somebody else from NZ on this forum too.

Cheers Eileen.<img src="i/expressions/sun.gif" border="0">

anonymous · Dec 20, 2005

Hi Kat, can you share with us all your treatment. I can't seem to get rid of staff.

c

wuffles · Dec 20, 2005

<blockquote>Quote <hr>Originally posted by: JazzysMom I must be an odd ball. I continuously show staph & pseudomonas. I have never erradicated it from me. I have slowed it down, kept it under control & kept an eye on it. I havent always been on antibiotics for them. It seems now a days I am always on something, but in my earlier days I didnt take antibiotics until there was an active "infection" with the change in cough, sputum color etc. Are they trying to rid her of it completely or keep it from becoming an infection? I believe the way my doctor handles it has made me less resistant to many meds & overall has kept my health well. Most of my problems have been from my lack of self care. Just wondering about your daughter since she is so young. As far as the severity....people or at least CFers classify it in different ways. Some base it on the health situation at the time & some base it on the lung damage done that is no reversable. I personally base in on the lung damage because a situation is often reversable. However there is no REAL way to gage it since it changes almost daily & from person to person.<hr></blockquote>

I'm the same as JazzysMom in that I have cultured pseudomonas for a few years and recently cultured staph but they don't really cause active infections. I do have more sputum production and use my asthma puffer more often than I used to, but that's really it. I only use antibiotics when I get a flare-up [usually when I get a cold and it moves to my chest]; my pseudo and staph are both very sensitive to about five antibiotics so I know when they do flare-up, an oral antibiotic will usually do the trick in 2 weeks. I think something that helps me keep the infections away are my multivitamins, horseradish + garlic tablets, and healthy lifestyle [no smoking, drinking etc].. I guess that can be hard with little kids seeing as they're always around bugs and colds.

Jenny, different bacteria affect different people in different ways so try not to worry about pseudo or anything else until it happens! <img src="i/expressions/face-icon-small-smile.gif" border="0">

Marjolein · Dec 20, 2005

Eileen, are you in the UK or somewhere else in Europe? Cause i've noticed they don't have Flucloxacilline in the US. I've mentioned it for treated Staph on here and somewhere else but nobody knows it<img src="i/expressions/face-icon-small-smile.gif" border="0">
I think it works wonders for me in keeping Staph out of my cultures.

clairebells · Dec 20, 2005

Hi again everyone and thank you all for all your responses! Chrissy has been on Keflex for about 3 weeks now, and her last culture came back CLEAR (first time in a looonnng time!); this is such a relief. Mind you now she has a cold, but overall she is much brighter, livelier, coughing less etc. So yes staph can make you feel awful - she's grown some other weird things before but so far staph makes her the sickest. I think I posted earlier that apparently years ago when CF kids would only make it to about 4 yrs old, it was most often staph infections that killed them, so thank goodness for more and better antibiotics.

So my plan now is once her Keflex is done (another ten days), I'm going to start giving Chrissy a low dose of oil of oregano (little gel caps, not going to nebulize the stuff) and see if that can prolong the staph-free period (so far even when she gets clear of it, it always comes back) - so let's hope Sean is right!! Other than that, it'll be more Keflex, but too much of that stuff significantly increases the likelihood of pseudomonas.

Anyway, I wish everyone a very happy, healthy, Merry Christmas. My heart goes out to those who have lost loved ones to this awful disease (I lost my Dad to cancer less than two years ago, so I know how hard it can be missing loved ones during the holidays).
And Marjolein good for you for getting back on the tx list - I saw your website - you are such a pretty, brave girl - all the very best to you!

Jenny (mom to Chrissy 4 w/CF and Claire 6 no CF)

Marjolein · Dec 20, 2005

Hi Jenny

First of all thank you for you really kind message.
Good to hear Chrissy is feeling so much better! I hope the Keflex keeps working? Can she take that as a prophilactic too? Like i can take the Fluclox?

Merry Christmas to you too! and a very good and specially healthy new year!