A Few Easy Questions

[LoveShines4Austin]

Hello...I'm brand new to this forum and I'm not exactly sure what format to ask my questions in...so here goes

My son, Austin, who will be 17 years old next month, has CF/CFRD. He was diagnosed at 3 years old. Yesterday he started on Tobi by nebulizer and Cipro by mouth. Cipro for 3 weeks and Tobi twice a day for 28 days, every other month.

This is our FIRST time ever having to deal with a lung infection of any kind. I am pretty sure the nurse said that he had a Staph infection of 4+. This was a big blow for us so we are full of questions and can no longer be "in denial".

1. He wanted to know if it is normal to have a horrible taste in your mouth after using the Tobi. He uses a mouth wash before and after each treatment...but is complaining of the horrible taste. He describes it as "That first morning taste...all thick and icky". Is this normal and is there a way to combat it? He says the taste is non stop.

2. He was given a Z-pack a couple of months ago after having a barium swallow, as a preventative after having an invasive procedure. He developed what we thought was a yeast infection in his mouth. He was given the Nistatin swish and swallow for almost a month before the worst of it went away. He still complains of sore taste buds. I believe that the antibiotic caused it and we are preparing for it to come back now that he is on another antibiotic. He was told to eat yogurt every day to help with it. Is there a chance that it is NOT a yeast infection? Could it be caused by Pseudamonus on his tongue or the Staph?

OK...that's enough for now. I'm sure, as reality sets in, that I will have many more questions. I promise that from now on I will do an extensive search of the site before I start another topic. I know that repetitive posts might be bothersome...but I'm kind of in a panic. I hope that someone can chime in with some helpful input...thanks in advance.

Laurel

 

[65rosessamurai]

Hi Laurel, welcome to the Forum!I've never dealt with Tobi, personally (if so, it was a long time for me), but there are many others. I'm not sure about the Z-pack, though.I did find that if you use the search function, and input "Tobi", (for example) then, select all the navigation titles (Adult, Teenagers, etc.-- for Windows, you click the top one, hold the shift button and click the very bottom to select them all--if you want to extract some from the list, press the control button and click the highlighted title you want to extract) You'll come up with a lot of subjects with that word in it.Even if you do find it, asking more about it is something expected, and everyone is good natured about the "repetitive" questions.  I don't see a problem, this is a good way to meet others on this Forum.I did recall someone mention it's got a strange taste, but since I'm the furthest East, and online while even the "Night Owls" are sleeping, I'm sure you'll have a lot of replies for you, soon.The fact that Austin had gone so long without such medication sounds good.  I hope outside that, he's doing good.By the way, my name is Fred, I was diagnosed at the age of 7, I'm 40 now and live in Japan.  I just started here a few months ago, but feel very comfortable here.Good Luck!

 

[IG]

Tobi, yuck, that's all I can say about that. One of the worst tasting meds I've ever taken. About the only thing I can suggest is brushing your teeth with lots of very minty toothpaste [brush the tongue too] and mouth wash.

Not sure about the yeast thing. But i'm sure somebody else will.

 

[LoveShines4Austin]

Wow...thanks for the fast replies

Fred I've read quite a few of your posts on the forum and I've found you to be a rather awesome person. I was just telling Austin about your medication predicament and he said, "I wish I could send him like 500 of my enzymes a month. Is that illegal?" I just smiled at him and my heart is bursting with pride. He's a very sensitive young man!

Immortal, he agrees with you, "YUCK!? He has only done the nebulizer twice and it's already a cumbersome situation for him. But he's a computer genius, so he will go set it up next to his computer and use it while he is there. Hard for him to sit still for 20 minutes. LOL

I just wanted to thank you for your replies and I'll look forward to anymore that might come in.

I'm the ultimate "night owl"...so I'll be around...

Laurel

 

[IG]

That's how I got so into the net really...
Eventually I learned to drag my treatments out for hours.
Treatments equalled net time.
Longer treatments = more net time.

 

[65rosessamurai]

Laurel, Thanks for the reply, I'm touched.  Didn't really think I had such an impact here, I'm still new!Tell Austin, thanks for the meds, but I think the customs officers would be a little upset!Austin sounds like a good man. (some guys at 17 can be called that!) And, a computer genius, at that!Did you have any luck with the "search" function? It might work with using the "Z-pack" as a key word to search.  The worst that'll happen is that this spool will be the only one to show up for a reply. I found the "search" function to be helpful in a few instances, myself.Fred

 

[Alyssa]

Laurel,

I am also new here -- sounds like we have a few things in common besides that!

My daughter is 17 years old and this summer was her first pseudomonas infection. She too went on the Cipro and Tobi. Yes, the Tobi tastes terrible. One of the nurses suggested sucking on a jolley rancher while doing the Tobi to help cut the bad taste. My daughter also suggests taking breaks when first getting started -- it's hard to get used to.

We've never had any trouble with the yeast like you mentioned but it sounds like maybe he was having trouble with that before he started the Tobi? My daughter mentioned that staph will leave a metalic taste in her mouth.

Hope that helps

 

[LoveShines4Austin]

Alyssa *hugs*

Thank you for your reply. Quick question. Did the Tobi make your daughter cough a lot when she first started using it? Austin just used it for the 3rd time and he is in his room coughing pretty bad. He rarley ever coughed before he started using it...in fact, I used to panic whenever I heard him cough, and that was like twice a year. We are kind of scared right now and feeling like we've had a major set back. <img src="i/expressions/face-icon-small-sad.gif" border="0">

Thank you very much for the JollyRancher suggestion. He has diabetes so I guess I'll have to find him some sugar free mints or something. Austin thanks you also.

 

[luke]

Laurel,

Yes, tobi will leave a bad taste, take a puff or 2 the stuff is a little nasty. And, yes any inhaled medication can cause a cough. He will get used to it after a little while. If he dosen't already have a bronchodilator he may need one. As for the mouth irriation does austin take any inhalers or inhaled meds(before Tobi). Most likely the breakdown is from a inhaled medication and not the Zithromax. If he does make sure to have him rinse himm mouth after every treatment.


luke

 

[JazzysMom]

His body has to get adapted. The taste he learns to tolerate. If he ever actually "likes" it, he will be the first that I know. He could very well get hoarse during & shortly after the use of the Tobi also. I dont know about the yeast/thrush in his mouth, but any of the meds can cause an irritation. It is very important that he rinse after & keep the nebulizer clean. Sometimes sucking on a lollypop or drinking something inbetween puffs on the neb will reduce this as well as help tolerate the taste. Pretty much you need to try what works for him. The problem in his mouth is not likely pseudomonas or staph. That is a good thing. We dont want those bacterias in additional places do we. GOod Luck! Dont worry about being repetitive in ???. Thats what we are here. Sometimes we might suggest searching because there has been an overwhelming response to a ??? previously which might be of benefit.

 

[Dea]

I take acidophilus two times a day. You can buy it over the counter..and is not expensive....it is used to help kill many kinds of bacteria....which is probably what is going on in mouth. I have lots of problems with that...as a woman I can get a prescription for diflucan..which also helps when I am actually on the antibiotic. The yogurt is good too! As far as the taste of Tobi goes....theres no way to explain how nasty it is...just have to keep the mouth rinsed out after using it. I chew sugarless gum after I use it....it helps to get rid of the taste faster. Good Luck and Take Care!
Dea
32 w/CF and CFRD

 

[anonymous]

Welcome to the site!
As others have mentioned, TOBI is nasty tasting. When I first started it, I would take breaks for a few minutes to swish my mouth out and then go back to it.
It also is common for it to cause broncho spasm (coughing, shortness of breath, etc). Using some albuterol (nebulized) or an inhaler should help if he has these symptoms.
The hoarse voice will most likely happen too. It is a very good medicine and works for almost everyone, just let your doctor know if there are serious side effects (like being very short of breath, etc) and see what he or she suggests.
Good luck!

 

[IG]

Speaking of side effects, and I completely stress this, if he experiences any ringing in the ears or any hearing problems what so every tell your doctor <i>right away</i>. An adverse side-effect of tobi is hearing loss, though only occurs in a small percentage so you shouldn't have to worry. I was never informed of it myself and often wonder if I could have at least been a little more aggressive in preventing my own hearing loss.

 

[wallflower]

It sounds like he has Thrush in his mouth - some antibotics can cause this. I had it a couple of years ago, and remember it not being fun. Make sure he rinses his mouth really well after every neb, and tell your doctor. Thrush can be treated, but it takes a little while for the tongue to go back to normal.

 

[serendipity730]

Laurel,
As other have said Tobi tastes gross. Sometimes the taste really bothers me, and I drink water throughout the treatment to wash away the taste. The jolly rancher is a good suggestion too. I don't think that the Z-pack caused your son's infection. Some people just grow less "good" bacteria than others, I guess. The yogurt is a good idea. Acidopholus is another probiotic that helps maintain good bacteria growth. I hope that your son's feeling better, and we would all like to see him here sometimes also!

 

[anonymous]

If it is thrush, you can try gentian violet, a topical solution that will help get rid of the fungus. Beware- it is bright purple and can stain. He will have a purple mouth for a few days!

 

[Alyssa]

Laurel,

Yes, the Tobi made my daughter cough a whole lot more than I had ever heard her cough before -- what she did for the first couple of weeks was hold the neb close to her mouth but not completely inside of her mouth for the first couple of minutes. Yes, she missed getting all the medication into her lungs but it allowed her to "ease" into the treatment with out stopping to cough so much.

You've gotten good advice on the acidopholus, I would just add, be sure to get a good manufacturer and make sure it is "live".... one that needs refrigeration.

Oh, and on the Cipro -- our pharmacists and doctor dropped the ball on informing us not to drink milk with taking it -- there was some concern that we lost some of the effectiveness by drinking milk to swallow the Cipro, but she did test negative two more times after just one month treatment of Cipro and Tobi so all is well.

 

[Emily65Roses]

I myself had thrush a few years back, and to this day my taste buds still aren't the same. Course, part of my problem is that I never took the meds to get rid of the thrush. I couldn't make myself, they were these gross tablets 5 times a day, and then after each one I had to not eat or drink anything for half an hour. Way too gross. But if his taste buds are still sore, it could easily be linked to the thrush, I think. Mine are still really sore when I eat certain things.

 

[LoveShines4Austin]

Thank you, to you all. I have passed on your comments and suggestions to Austin. I have learned SO much in the last 24 hours from this forum. I also emailed the link to Austin and told him that he would be welcomed here. He has ADHD (not taking meds for it) and doesn't have a lot of patience to sit here and read everything...but I know he will come by and check it out in due time.

~*~*~HUGS TO YOU ALL~*~*~

 

[Alyssa]

Hey Laurel,

I forgot to mention in my other posts about the possibility of him clearing these two infections too. You said he has never had much of a cough and this is the first time he has had a lung infection. So I just wanted to let you know, he probably has a pretty good chance of eradicating both the staph and the psuedomonas. Did they tell you if it was the mucoid or non-mucoid type of psuedomonas? Hopefully it is the non-mucoid -- that means it will respond better to the antibiotics.

My daughter has been able to completely clear staph infections (including one MRSA about 4 years ago) and non-mucoid psudomonas (this last summer). So I know it is possible in some of the more "mild" or "A-typical" cases of CF.