7 month old positive for MRSA and PA

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Jenrenea

Guest
My daughter's cultures just came back positive for MRSA and PA. This is new for us. Haven't spoke with the doctor yet. Trying to figure out where and how she caught both at the same time. What is the normal course of treatment for a 7 month old?
 
G

Gammaw

Super Moderator
I have no doubt that makes you crazy. It's pretty impossible to determine the actual source. Do you know anyone with PA or MRSA? Stay away from hot tubs, rivers and streams, public pools if you can. Do you have regular contact with a gym or workout setting? It is just as likely if not more likely that she acquired it from the clinic setting.
Ask for a consult with an infectious disease specialist as well as your CF team. Both bugs can be eradicated when caught early and hit hard. Stay calm. Work it through. Skip no meds, treatments, or visits.
Blessings.
 
J

Jenrenea

Guest
Thank you! I'm trying not to drive myself crazy. will talk to the doctor on Monday which seems so far away. No she hasn't been incontact with anyone with MRSA or pseudo. No gyms, hot tubs, rivers or public pools. We have a pool but it's maintained really well. My step mom keeps her so no daycare. I was actually thinking she might have gotten it from the clinic. Because her last culture at the end of April was negative and she had blood work and chest x Rays in June and all came back fine. So to pick up both bacterias at once made me think clinic. Is it normally just home neb antibiotics or is it a hospital stay? My older brother had cf but he never had any treatments or meds beside enzymes until he was 18 so I'm not sure what they do with baby's. We just started albuterol and CPT twice a day because of a cold and ear infection. But they said they were for prevention because her lungs sound great.
 
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Aboveallislove

Super Moderator
Hey Jen,
givrn that they just started her on albuterol and cot, I'm wondering if she's at an accredited cf center. Ds was started at two weeks old on both and by two months was also doing pulmozyme and by nine months or so the vest...while we pushed for vest early to avoid terrible two rebellion and to give my hands a break, the rest was normal standard procedure and all to keep lungs healthy. If accredited, I wonder if it makes sense to try to add pulmozyme to the mix and if they don't recommend eradication to get a second opinion at another accredited cf center. Hang in there mom. Hugs
 
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Jenrenea

Guest
She's at Children's Medical Center in Dallas. It should be accredited. Wow I had no idea they started those things so young. We started enzymes at 3 weeks but that was it. They told me vest would be at 1 year. I wish I could get it earlier to get her use to it. I know there is also a cf center at Cook Children's in Ft Worth if we need a second opinion. Thanks I'll ask about the Pulmozyme
 
R

Ratatosk

Administrator
Staff member
Ds started cpt and albuterol atrovent nebs in the nicu right waway. 4x a day while I was home on maternity leave, reduced to 3x a day when I went back to work. He cultured an enterbacter choclae bug at 2 months, which is common in nicus, so we figured he came home at 6 weeks with it. Cultured pa at 3 months, before I went back to work, so figured he got it at clinic. Was put on Tobi nebs and an oral Abx. Increased cpt to "beat it out of him"
 
G

Gammaw

Super Moderator
I had an identical reaction Aboveall......is this an accredited center?! My 10 year old has been on chest therapy and xopenex (albuteral at first but reacted poorly to it) since his genetic testing confirmed CF when he was about 2 weeks old. And of course we put enzymes on the nipple of his bottle, attached by a dip in applesauce. What is his genotype? Have they told you what mutations he carries? If he's culturing MRSA and PA, there must be lung involvement, so chest physio is a given right from the beginning. They gave us a black vibrating wand pretty quickly after the suction cups. He was on vest by 2 yrs old.
The clinical trial protocol is interesting. Our clinic but him on Vancomycin (home antibiotic) along with protocols for nasal mupirocin, washing everything with Clorox, bathing in Clorox water for (I think) two weeks, and family treatment with nasal ointment and Clorox baths. I will tell you it didn't work and they did say that when it does, MRSA usually returns within 6 months. The experimental protocol is similar but with some different agents. Interesting.
He did however, culture PA much earlier than MRSA - he was less than a year old. But with repeated treatments, home antibiotics again, including TOBI, he was PA free until he was 8, when he cultured it chronically.
Take heart. Despite all this, my not so little anymore darling has an FEV1 of 96% at 10. Many CFers live with these chronic infections aND boast good lung function. Just waiting for our silver bullet as a heterozygous F508del. Keep calm. I know I know I know how it feels.
 
J

Jenrenea

Guest
I just looked it up and yes it says it's accredited. (My brother went there for 26 years) We go to the clinic every month for check ups. Culture in February was negative and so was the culture in April. Labs and chest X-ray in June were good. She's in the 58th percentile for weight and lungs sounds have been clear even at last weeks visit. They talked about starting albuterol in August except she got a cold so we started early. We've been doing CPTs 3-4 times a WEEK for a couple of months now but they've said she sounded great so hold off on nebs. She has F508d and G542x and severely pancreatic insufficient. She has had absolutely no issues since birth then all of the sudden positive for both MRSA and pseudo. Now I'm wondering if we should try a different clinic.
 
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Gammaw

Super Moderator
You need to simply feel comfortable with your CF team. We do not mean to contradict your pulmonologist. But we can and do provide avenues for questions and exploration so you can have intelligent and helpful conversations with your team. Often the difference may be between pulmonologists who are proactive and those who are more cautious. The kind you want depends entirely upon your personality and decision. For example, some docs will hold back on antibiotics to minimize later antibiotic resistance where others with jump in with all the guns they have at one time. There are so many variables.
With that preface, I'm glad she's been on CPT for months. I misunderstood you to say she had just started CPT. The standard also seems to be increased CPT to 3 or 4 times a day when sick. Assuming your docs have told you that already, that's something you can do right now if you haven't already, but only with your teams blessing. No one here knows her full history, so we can only really help arm you with questions and resources.
I know the shellshock that comes with these kind of lab results. I was personally ready to storm the Bastille when they said the word MRSA. Listen to me. Take a breath. Your baby is doing ok. She will be fine on Monday when you call. I do have to ask how you found out her results? I will applaud my Team for immediately calling with the results before I got the mailed notice. That way I could scream immediately into the phone and someone heard me, calmed me (a little bit) and gave me treatment protocols. If you would like to call me so you have someone to talk to, just private message me and I will PM my phone number.
Your baby is ok. You are ok.
Blessings.
 
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Gammaw

Super Moderator
Here is a link that will provide you with data on each accredited center. You will need to register if you haven't already. But you can look up the information on the Centers in your area. Remember too, that if you decide you are not comfortable with your pulmonologist's individual approach, you may find a different pulmonologist at the same center that thinks more like you. But be sure to first have those discussions with your current doc. Asking questions is the best way I know to feel comfortable with your treatment plan. http://www.cff.org/LivingWithCF/CareCenterNetwork/CareCenterData/
 
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Jenrenea

Guest
I really like the cf Drs we see but we'll see on Monday what they decide then we'll go from there. We've been doing CPT occasionally and just started doing them routine twice a day for about a week while sick then is suppose to drop to once a day next week. Same with the albuterol except we weren't doing that at all until last week and now twice a day for about a week then we'll drop to once a day. It does make me nervous about starting antibiotics so young because I don't want her to become resistant but I also don't want the bacterial infection getting worse. I've started diffusing some essential oils because I've read some positive things so maybe that'll help a little. Of course not to take the place of meds. I'm a pediatric RN but when it comes to your own kid your mind goes blank.
 
J

Jenrenea

Guest
Oh I found out her results through the patient portal app. I can get on there and see all her lab results, all her appointments, weight, vitals, and medications. I can also message the doctors from there.
 
R

Ratatosk

Administrator
Staff member
Unfortunately, not all accredited clinics are equal. We went from a proactive clinic in the city which stressed minimum 2 cpt neb treatments a day while in the nicu, to a reactive on in our city. Most of the staff locally was nice; however, one told me not to keep feeding ds extra calorie formula because he might get fat. He was barely eating and at the 50th percentile. When I mentioned ds chesty cough the head of the cf program said, they cough, it's what they do. Besides his lungs were clear. Later got yelled at by the cf doc in the proactive clinic where we now go. Ds had bronchitis he could've ended up back in the hospital. Another local cf doc told me to stop doing cpt and not to worry as great strides had been made in lung transplantation. Ds was 3 months old. Our cf doc currently has always stressed cpt to beat the coughs or wheezing out of him. Minimum 2x a day, more if sick, more if you have time to keep the lungs healthy.
 
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Gammaw

Super Moderator
Yikes, Ratatosk. No they are not all equal, but that UNEQUAL is discouraging. I'm with you......I'm repeatedly asked if his current cough when sick is a change in his baseline cough. I always reply, that NO cough is acceptable. I still have the luxury of rejecting any cough as "acceptable." Yes, I'm the proactive type and must encourage you, Jenrenea, to ask why they think CPT just a couple of times a week is acceptable at any age. Why are we waiting for a cough? Or lungs that aren't "clear?" But I have found distinct differences between docs at the same clinic too.
 
A

Aboveallislove

Super Moderator
Hey Jen,
A few follow-up thoughts: First, CFers colonize bacteria even when they are doing treatments from day 1, so that your center didn't have you start until recently doesn't meant that is why your little one cultured MRSA and pseudo. Second, I think most here are proactive in their approach to CF, but there are some doctors who aren't. So you do need to have the discussion with your doctor (we aren't trying to give medical advise but our thoughts based on our experience). For me, proactive is 2x a day Alburterol/Xopenex and 2x a day percussion (and later vest) and by 6 months Pulmozyme and by 2 hyper-sale. And when sick more. It may be your doctor is open to a more proactive approach if you discuss. Or that you decide you want a different doctor who is more proactive. But you'll need to discuss to find out their medical expertise and maybe get a second opinion if you aren't comfortable with it. And it will likely also be based on how they want to handle MRSA and pseudo. Again, personally, I'd want to try for eradication and believe at least with pseudo that that is concerned "standard of care," (I think MRSA isn't clear yet which is that article I posted).

Finally, one other "red flag" for me was that you could see your results without talking to the doctor. Most health systems will only release the results once they have been reviewed by a doctor, but it doesn't sound like anyone called you on them, and I would think they would have when they reviewed for them to be released, so I wonder why they didn't call you? Just another thing to maybe ask when you talk, "I'm wondering if I need to call or if the doctor always calls me when there is a new bacteria cultured."

Hang in there mom. Praying for you all.
 
J

Jenrenea

Guest
Thank you! Yeah the not calling with results really bothers my husband but it hasn't been that big of an issue until this one. The did a viral swab and a throat culture and they called the evening the viral swab came back which was positive for rhinovirus (cold) and i got on the app the next day and saw the doctor had put notes on the virus results saying that her cultures came back positive for MRSA and pseudo and they were waiting for sensitivities and would call me on Monday. I guess it was a note to me but I still expect a phone not a random note attached to another test. These are definitely things we will be discussing on Monday. Thank you everyone so much for your feedback and help. I greatly appreciate it. No one really knows or understands like another CF parent
 
A

Aboveallislove

Super Moderator
Hey Jen,
Based on your note, I wanted to make sure to clarify my concern: I don't think most clinics call with culture results if all is clear or the same. I think that's kinda standard for the course. My concern was that your precious little one cultured two new things that require treatment (or at least the pseudo and likely the MRSA) and that no one notice it since it was released to you without a call. But the note makes sense...they need to know what to treat with and would contact you when they knew on Monday. Still, it would be so much more ideal if they could call and explain what's going on and what's coming with any new culture. ...with DS when he cultured something new I had asked them to fax results to me and the nurse knowing I'd freak called ahead and said so kindly "you'll notice he is culturing a new bug. It is very typical for those with CF. We don't treat unless there are issues (it was h-influenza)" and then helped me with it by stressing it meant they got a good culture. I'm so sorry they didn't give you that call so you could know what to expect etc (i.e., not likely a hospitalization). Hang in there mom.
Hugs and prayers,
Love
 
J

Jenrenea

Guest
Well the cf clinic is in a building with several other clinics so, no I don't really see people with mask on in the halls and we aren't really in the waiting room very long. The staff gowns and gloves up before they come in the room. But our visit in June we went to the lab first then radiology then the cf clinic. So, I'm wondering if she picked it up then. Who knows... I'll drive myself crazy trying to figure it out. I just know now I need to be more aware and make sure I'm washing her hands before she puts them in her mouth or keeping her hands off of things.
 
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