Tuesday, April 19, 2011

MRSA and Cystic Fibrosis continued...

Last week I posted an exchange between myself and a fellow community member regarding her child and MRSA (which can be found here). Many of you were very interested in the post and requested that I share stuff like that more often. The community member and I continued our conversation a bit so I thought I'd share with you the rest of what we discussed. Hopefully you find it useful and/or interesting.

About the MRSA. I am still confused. The nurses, RT, pharmacist and Dr all told us that lots of people carry the bacteria and dont even realize it. If it wasnt that our son had CF we wouldnt know he had it either. If it were any of our others kids if somehow we found out they tested positive for it they would probably treat them w/ antibiotics but if they continued to test + they wouldnt treat any further and wouldnt worry about it unless it caused problems. He said it wouldnt be anything I would have to disclose to the school district when he started either. (if the antibiotics fail and he remains + that is) One of the nurses said they havent seen an effect CF wise in patients who carry it. But they would like him not to have it so he had more options when it comes to antibiotics seeing MRSA is resistant to the penicillin family. They also said there are different strains of MRSA, there is hospital acquired which seems to be more difficult to eradicate and community acquired which has a better chance. I asked about the bleach baths again and he said we do have staph on our skin. Although MRSA likes the nasal and sinuses more, it is present on the skin also. By taking the bleach baths it just helps reduce the amount of bacteria present and helps the drugs do their job.

So, in one breath they make me feel like "no worries, lots of us have it...we're exposed to it all the time. Less than 1% of people actually show symptoms and have the boils/lesions. He'll be fine." Then the next breath though they are all dressed in gowns wearing gloves talking about how he'll have to be on isolation from now on until/if his cultures are negative for 3 consecutive months.

The Dr himself said he understands our confusion and that he agrees the medical field is kind of hypocritical when it comes to treating. One breath, no big deal, the next VERY big deal.

I asked about the rest of us getting tested. He said he thought it would be a waste of time, as they probably wouldnt treat us anyway. He also said that very recently they've started testing everyone who is admitted to the hospital especially for surgery for MRSA. If they test + then they treat them w/ antibiotics prior to surgery but then that's it. They do no follow up w/ that patient regarding the MRSA.

I was kind of peeved though for the fact I found out yesterday that at his Feb 8 clinic he did test + for staph. Not MRSA but a staph and not only did they not let me know that but they didnt do anything about it either. I asked him why not? and he said they dont treat for a staph unless he was sick which he wasnt. Dont get that though...isnt any/all staph not good? Whatever, cant do anything about that now either.

So, he is on Clindamycin and Rifampin (which is a dark red color) The Clindamycin is the yucky one...3xs/day for 10 days. Not going well. I went to Walgreens today and had them flavor it thinking maybe that would help but nope. Put a little in pure grape juice (they flavored w/grape) but nope. So I have to pin him down and try my best to get him to swallow it. The Rifampin doesnt smell like it would taste bad but he wont take that one either. AND that one stains like mad! I feel bad, he gets so totally pissed at me he doesnt even want me to hold him when he gets done. He runs to his big sister and makes her hold him:( He also has some ointment that we have to put in his nose 2x/s day for 7 days. Once he's done w/ these two antibiotics he'll get another refill on the Rifampin and then start Bactrim. He'll be on something for a total of 28 days.

As far as other people that carry MRSA - it is estimated that about, depending on who you believe, 30 to 70% of nurses in a hospital setting carry MRSA in their nose or on their skin. I think the best way to really grasp how it is different is to think of all these bacterias as completely different for a CFer. Like the docs said, MRSA hasn't been shown to do a lot of damage so far, so a lot of clinics treat it, or don't, like your docs do. The biggest difference is for the CF community it can get into our lungs because we don't have the ability to naturally clear our mucus as the rest of the population does. As I said before that's the key difference when it comes to all of these bacterias. So although many healthcare workers will have MRSA it never makes its way to their lungs because they can “naturally” fight it off. Like your medical team is saying it's not something that you have to disclose to the school district because it's not something that can spread to the general population from your son.

The “he'll be fine” attitude is very common in the CF community towards MRSA. It is true that more likely than not MRSA will not have a major impact on his health anytime soon (as far as studies have shown and what the American healthcare community believes). They were wearing gloves and gowns because it is of course better not to spread MRSA to other patients if they can avoid it. Even though it may only be a 1% chance to develop into skin lesions, they certainly don't want to take that chance with passing it on to others.

Confusion is expected. Remember that medicine is comprised of educated guesses. It's often the doctors that make the most correct educated guesses that are considered the best doctors :)

I agree that getting the rest of the family tested would in fact be a waste of time. If you wanted to take it upon yourself to do some bleach baths and some nasal washes it certainly wouldn't hurt, but it also wouldn't necessarily take the chances down to 0% that you would carry MRSA. Also keep in mind that your son may very well of not have gotten MRSA from your family and picked it up in clinic or out in the community, which is probably more likely.

Each clinic has a different response to staph. Some will treat aggressively right away and some will do what your clinic did - not treat unless symptoms are present. I would venture to guess that most CF clinics take the stance that your clinic does and that is not to bombard the body with antibiotics unless it's absolutely necessary. Not saying that I agree, just saying how it is.

I know it's tough for a little guy to understand but there will be a light at the end of the tunnel if he sticks with it. It can be so frustrating taking all of those meds but you just have to do the best you can with making them understand that as it is in fact all worth it (may be impossible with a 1 year old). I know you yourself can get frustrated, angry, disappointed and sad but make sure you always show him strength and commitment because that's exactly what he needs modeled from his parents.