Infant diagnosed-Confused-Hurting

gypsymout

New member
Currently my little girl is 5 months old now! We have had 3 throat cultures over the last 3 months and they all have come back with MRSA. Our Dr didn't even tell us about it until we went back the following month. We are treating it with bactrim daily. We currently go to Tulane Medical Center in New Orleans and I feel as though they are not being not proactive enough with the MRSA are wondering if we should try the Houston Tx Clinic. Any advice on help with the MRSA or information on the better Hospital is greatly appreciated.
In 2 months she has gone from the 39 percentile to 80 percentile for her age group. I just want the best care for her! There are days that I feel like I am falling apart and know I have to be strong for her.
 
S

stephen

Guest
gypsymount;

It's great you want to be proactive - and you should be.

From my experiences, MRSA is not always aggressively treated. It often depends on other conditions. Often it isn't treated at all for many years, but I don't know what the protocol is for babies or young children.

If you have any doubts, I would surely get a second opinion. It can definitely make you feel better. If you feel uncomfortable about seeking a second opinion, you don't have to mention it to your current doctor. I have gotten second and third opinions many times, usually having reports sent to my current doctor, but sometimes keeping it confidential.

.
 

Gammaw

Super Moderator
Hi gypsymount. Years ago, my son, then 4, cultured "simple" staph aureus and our CF center classified it as "normal flora" and didn't tell us. When he started having symptoms, they finally told us. The nurse explained that they don't treat it unless it becomes symptomatic. I went through the roof. The poor nurse heard me screaming that they better never withhold anything from me again. I felt as though whether they treated something that was potentially troublesome was a decision that should be made in consultation with us, not instead of us. I regret going off on them like that, but the policy needed to be communicated and they haven't withheld or delayed reporting since! They understand - tell us everything.
My CF Center also feels that MRSA is generally not treated - unless it becomes troublesome. I think the general view is changing - that it is possible to get rid of it when first cultured, although it's likely to recur or just go "underground" despite treatment attempts. They also don't want to risk unnecessary antibiotic resistance by trying to treat something they know will not go away. But the fact of the matter is the studies show more rapid lung decline if MRSA is cultured. That's not pretty, but it's generally accepted as true. So whether it is treated should be in consult with you.
If you are uncomfortable with your clinic's approach, you can get a second opinion and frankly I would get one from an Infectious Disease specialist as well. They deal with MRSA daily and may have other protocols they would recommend. I have seen some studies and reports that MRSA, which is fairly common with CFers, is the subject of much promising research for treatment and even elimination.
I will also throw this out for - hopefully - general comment. It's my understanding that the usual picture people have when they hear MRSA is skin boils. It makes people afraid of you or your children for fear of contamination. But I also get the impression that culturing MRSA in your lungs is not quite the same thing. MRSA in the lungs apparently keeps to itself (biomes?) and doesn't generally result in any skin symptoms. It is also apparently present in the nasal cavity at one time or another of a large percentage of the general population. It's just not the super scary stuff originally pictured. I have also read there are two ways to acquire MRSA - "hospital acquired" and "community acquired." Common community locations are gyms and locker rooms and I believe this type of acquisition may be more likely to result in skin issues. Hospital acquired can certainly result in skin issues as well, but I get the impression that it is also more likely to make it to the lungs of a CFer, possibly through medical instruments and because of their susceptibility.
Now that I've said lots of things that may be totally incorrect, please do remember I'm not a doctor or an authority on the subject. These forums are wonderful for exchanging information and commeraderie, a critical aspect of dealing with a disease that requires you to physically stay away from others similarly situated! But any information you get here should generally just help you formulate questions you may want to ask your docs if you want a greater understanding or want to entertain a more proactive approach!
Relax. You are on the CF trek which involves slowly learning about lots of different aspects, making you much smarter than your average friend and family member about medical issues, hygiene issues, and even personal growth!
 

Aboveallislove

Super Moderator
Gammaw that is interesting. I was just wondering about MRSA because we just got our newsletter which has the updated CFF guideline which say "CF patients should avoid direct contact with any person with skin/soft tissue infections caused by MRSA unless wounds are covered, hand hygiene is used, and no personal items are shared." So it sounds like the skin can go to lungs. And I wonder if lungs to skin? I was wondering that because I almost always have open cuts on my hands (I've always had extremely dry hands and fingers that crack and split and it is just worse now with extra washing for sterilizing and giving meds) so I was wondering if DS gets mrsa if that will be a risk for me for the skin...(trust me I've tried everything on my hand...)
 

Gammaw

Super Moderator
Interesting! I don't receive Newsletters from anywhere - is that through your CF Clinic? It's interesting that the guideline is specific to CF patients since everyone should obviously avoid DIRECT contact with anyone who has an active MRSA skin infection that is uncovered! Direct contact with a MRSA boil would be an excellent way, I suspect, for ANYONE to get MRSA. Certainly any CFer, as someone who is effectively immunocompromised, should avoid direct contact with a MRSA infection - I can imagine that it would go to the lungs, especially since people typically touch their hands to their face, nose, eyes, etc. I've read that anywhere from 30 to 60% of people have MRSA in their noses at sometime and its apparently even higher for nurses. For a CFer, it's a simple route to their lungs.
I also suspect that someone with MRSA in their lungs can wind up with a skin infection too. But I don't know how likely that is. I had a CF nurse tell me once that they had about 40% of CFers with MRSA at the Clinic, but none ever had any skin involvement. It's always made me crazy to take my son into the pulmonary testing lab on CF day and hear all the coughing going on. But I understand MRSA is not generally transmitted in the air. It requires direct contact. Obviously there are lots of other bugs that fly through the air though. . . . !
I would really ask your CF nurse or doc how vulnerable you would be with your dry hands. Frankly, I suspect cracked and split skin is not the same as having open wounds. I can certainly sympathize with your dry hands - I use antibacterial soap and hand sanitzer all the time since having a CFer in the family! I've given up trying to soften my hands anymore - I'd have to buy stock in hand lotion to make it profitable!
Let us know if you find out more!
 

Aboveallislove

Super Moderator
heehee. very true re everyone! Yes, our CF clinic does quarterly or semi-annual newsletters with a introduction to staff; an explaination of something--this time throat cultures another pft tests; a profile of kids; a profile of parents; and then a "main article" this one being updates on CFF infection control. Yeah, I'll likely mention to them my hands and ask if a concern (also just for staph) as some of the cuts are very very deep and open and bleeding at times. too much cleaning as a teenager using chemicals I think, added with thyroid problems, added with old age, and cold winters and then the antibacterial soap and hand sanitzer just tipped camel over. (dh on our first date asked what was up with my hands...they were so bad even then)....
 

Aboveallislove

Super Moderator
ps that comment re the nose makes me feel very vindicated because 2 times with DIFFERENT ER doctors we had to ask them to Purrell and they both said "we did when we came in the room" and we said "yes, but then you started rubbing your nose, wipping it with your fingers." augh....
 
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