How do you know when you need IV antibiotics?

[fel]

I have posted here before about my two sons getting diagnosed in their teens a few years ago. Because we did not go through the normal learning curve with CF, there is some basic knowledge that we do not have. This is one of these instances.

My older son, age 20 is having an exacerbation. He has never been hospitalized (for anything, let alone CF). He has been on cipro over 3 days with no positive effect yet. He is using his vest 3 hours a day, and is coughing too much to sleep at night. When we called the doctor, he said all we can do now is take him to the ER if we want to. My question is -- what is bad enough to go to the ER? The doctor really didn't give me a straight answer on this.


Also if he does go there, will he be admitted for IV antibiotics, or do they do some tests to determine if he needs to stay? How long is a typical course of IV antibiotics?

Final question -- he is not on TOBI and I found out tonight that he cultures pseudomonas. Is TOBI something that can be prescribed over the phone? Would it help in an exacerbation?

Thanks in advance you folks are so very helpful.

 

[triples15]

I have posted here before about my two sons getting diagnosed in their teens a few years ago. Because we did not go through the normal learning curve with CF, there is some basic knowledge that we do not have. This is one of these instances.

My older son, age 20 is having an exacerbation. He has never been hospitalized (for anything, let alone CF). He has been on cipro over 3 days with no positive effect yet. He is using his vest 3 hours a day, and is coughing too much to sleep at night. When we called the doctor, he said all we can do now is take him to the ER if we want to. My question is -- what is bad enough to go to the ER? The doctor really didn't give me a straight answer on this.


Also if he does go there, will he be admitted for IV antibiotics, or do they do some tests to determine if he needs to stay? How long is a typical course of IV antibiotics?

Final question -- he is not on TOBI and I found out tonight that he cultures pseudomonas. Is TOBI something that can be prescribed over the phone? Would it help in an exacerbation?

Thanks in advance you folks are so very helpful.

Hi Fel, I'm so sorry to hear that your son is having a tough time.

In regards to Cipro, it can take me a few days to a week to feel any benefit from it. Sometimes it does the trick, other times I still end up needing IVs. I usually try to give it at least a week and see how I'm feeling.

I know it's frustrating that you could not get an answer about going to the emergency room, but it is a tough call. I'm 34 and have had a lifetime of dealing with CF, but still struggle to determine if/when to start IVs. I avoid the ER if at all possible because usually they don't know what to do with us (CFers), and I've had bad experiences. It is far more ideal to be admitted through clinic so everything is set up for you. With that being said, if you get to the point where you are very concerned, then go. Is the hospital ER you would go to attached to your CF clinic? I would really try to avoid going to a hospital with no CF program. What are his other symptoms in addition to the coughing?

If you do go to the ER, they would assess him, pulse oximetry, blood pressure, heart rate, listen to his lungs, check temperature, do Xrays and maybe blood work, etc. and page the pulmonary doctor or fellow on-call (if this is the clinic hospital). They would consult with that doc on your son's condition and make decisions on whether or not to be admitted. If he were admitted, they'd start nebs etc., an IV for saline fluids, but probably wouldn't start IV antibiotics until the CF team rounds and sees him. A typical round of IV antibiotics is 2 weeks. They don't like to do less than that because studies have shown using them for a shorter duration increases resistance. I used to always do 2 weeks, but lately have to do 3 or 4. My guess for your son would be 2 weeks. He could most likely get started in the hospital and finish the course of IVs at home if that is what he would prefer.

I am really surprised that he cultures psuedo, yet is not on any inhaled antibiotics. Tobi is something that could be prescribed over the phone (and yes, could help an exacerbation), however, generally has to come from a specialty pharmacy so with it being his first time on it, it would take some time before you actually received it. With that being said, I would still press them to prescribe it because even if he ends up needing IVs this time, I would think he should still be doing Tobi on the one month on, one month off cycle.

I'm so sorry this is happening, on a holiday weekend no less. Seems to always be the way with CF. As far as the coughing too much to sleep, I know this is pretty obvious and he's probably already doing this, but sleeping propped up can help. There have been nights where I've practically slept sitting straight up.

I really hope I've helped at all, and once again very sorry your son is sick. Let me know if you have any follow-up questions to anything I've said.

Take care!

Autumn

 

[fel]

Triples15

This is such helpful information. Thank you thank you. From what you say it would probably be futile to go to the hospital, because although there is a CF center attached, they wouldn't even do rounds until Tuesday.

With regard to the pseudomonas, I only found out about it by asking his doctor what he cultured tonight. No one ever told him or me that he had pseudomonas, so perhaps it was just at the last Center visit in July that this came up. I am going to look into TOBI for him going forward -- will call about this tomorrow if we don't go to the ER.

It is really hard for me to figure out his other symptoms because when he is sick like this he rather shuts down. All he tells me is he feels awful.

Really we need a manual for adults (or older teens) diagnosed with CF!!

 

[triples15]

Triples15

This is such helpful information. Thank you thank you. From what you say it would probably be futile to go to the hospital, because although there is a CF center attached, they wouldn't even do rounds until Tuesday.

With regard to the pseudomonas, I only found out about it by asking his doctor what he cultured tonight. No one ever told him or me that he had pseudomonas, so perhaps it was just at the last Center visit in July that this came up. I am going to look into TOBI for him going forward -- will call about this tomorrow if we don't go to the ER.

It is really hard for me to figure out his other symptoms because when he is sick like this he rather shuts down. All he tells me is he feels awful.

Really we need a manual for adults (or older teens) diagnosed with CF!!

Hi again! I'm sorry, I can't imagine how helpless you must feel as a mom. I've often thought that when I'm sick it's just as hard or harder on my family members.

I wanted to clarify because I just went back an reread and my post was confusing ... I don't think that he would have to wait until Tuesday to start antibiotics. I think that if you went to the ER in the night, the pulmonary doc or fellow on-call would round in the morning (even on a weekend or holiday), most likely consult with the CF doc, and make decisions with him regarding IV antibiotics/best course of action. In my original post what I was trying to say (but didn't) was that no one from the cf team/pulmonary on call would most likely see you at night/in the night. The ER would probably page them for a quick consult, but nobody would come until morning. So sorry I wasn't clear. I'm only speaking from experience and the way it would work at my hospital, so keep that in mind too. We may hear from others who's hospital would be different. I am glad to hear that if he does go to the ER it is the hospital associated with his CF center. That is huge and would make me feel more comfortable with that decision.

Best of luck and please let me know if I'm still not making sense!

And YES we need a manual don't we!! Especially those with a recent diagnosis!

 

[windex125]

I agree with all the advice T15 posted to you, including giving Cipro 10-14 days to feel better, but I've also used with Bactrim at the same time. Double dosing orals worked many times for me. As for going to just a regular ER with no specific CF knowledge, don't do it... it is true they really do not know what to do with us. I found out the hard way with that one. If your CF doctor does suggest TOBI which I hear works great for that particular bug. Just make sure you know there is a side effect of loss of hearing. but I think for a pro-longed time which I was on. I do not want you to panic in anyway, as it is listed and does not effect everyone. But it did effect my hearing. Also don't tell your son at 20 anything negative about this. I did the opposite of everything the doctor's told my Mom to do when I was that age. I was quite a independent young woman, or was it rebel??? From what you wrote it sounds like me in my 20's never in hospital, or IV's I did not even know what IV meds were in my 20's my first hospital stay was in my early 30's there is so much good stuff out there now to keep well. Also when you mentioned he is vesting for that long, that is great. Good Luck, I want you to know a lot of my knowledge about my CF I learned from the very smart adults on this site. Pat/60-CF

 

[Printer]

Reading between the lines here, are your sons being seen by a CF SPECIALIST at an APPROVED CENTER? A CF exacerbation can ONLY be treated as an hospital inpatient with 14 days of IV's and PT. Honestly I am concerned as to the PERMANENT lung damage that will (is) occur with self medicating.

CF ROUNDS are a daily practice (even on weekends and holidays) by the CF TEAM.

Bill

 

[triples15]

Reading between the lines here, are your sons being seen by a CF SPECIALIST at an APPROVED CENTER? A CF exacerbation can ONLY be treated as an hospital inpatient with 14 days of IV's and PT. Honestly I am concerned as to the PERMANENT lung damage that will (is) occur with self medicating.

CF ROUNDS are a daily practice (even on weekends and holidays) by the CF TEAM.

Bill

Hi Bill,

I don't think they are self-medicating at all. From the way I read it, the Cipro was prescribed by the CF doc a few days ago to treat his increased cough. Sounds like they've been in frequent communication with the CF doc. I think one of the things she was looking for with us was personal experience in regards to how long it has taken for orals to "kick in" for us and some insight on to what may happen if/when they went to the ER. I don't think she's substituting our responses for medical advice at all.

Also, my doc has used oral and inhaled antibiotics to successfully treat several of my exacerbations. Other times they did not work and I needed to move on to IVs. When on IVs I don't do 14 days inpatient, in fact, lately I don't go inpatient at all but rather do them all at home. I used to go in for a few days to get started and then go home and finish there. This was/is something supported by current and former CF doctor (at 2 different accredited CF clinics). So to say that 14 days inpatient is the "ONLY" way to treat a CF exacerbation isn't accurate.

Autumn 34 w/cf

 

[Gammaw]

You have great information here, but I'm a little confused. Did you say that he was culturing pseudo but you don't know when that culture was done? If he's been culturing it since June or July, especially if it's the first time, you should have been notified immediately and treatments begun. Immediately. The best way to keep pseudo from colonizing is to treat it immediately, usually with a double whammy like Cipro and TOBI, hit it hard right away. It may well return later but sometimes it's years later if you followed initial.standard protocols. Find out when he cultured it. And if it was awhile ago and they didn't notify you and start any meds then, ask them why. I can't imagine a good answer but I have learned to wait before jumping. I look forward to hearing what you find out!

As for your other questions, the only other info I would offer besides all the great advise you've already received is that if he feels that badly, and is coughing so hard that he can't even sleep, I would head to your CF Center hospital. It really sounds to me like they may have let the pseudo get out of control.

 

[Aboveallislove]

I don't have any input, but did want to second Gammaws about the pseudo,.. that that is usually treated immediately and hard to eradicate. I'm thinking they might though think given the late diagnosis that he's had for a long time, but even then...

I did though have a question for Autumn and Gammaw as this is something I don't have experience with and it might also be important for mom to know: Is the reason to head to ER as oppose to the CF clinic arranging for an ADMIT, is because the ER can tell if it is pneumonia or something? And couldn't the on call CF doctor just order the admit even on the weekend and even without knowing, as oppose to going to the ER?

 

[Gammaw]

Mu suggestion is only based on the fact that it's a long weekend, the CF Clinic here is not staffed but the hospitals pulmonary/CF floor and ER are appropriately staffed. I wouldn't want to wait until everyone is back from holiday!

 

[Printer]

Autumn:

I stand corrected, I should have just said 14 days of IV's. As someone on Medicare, it is 14 days inpatient.

My feeling is that these two young men are still seeing local Doctor's and not having any connection with a CF Specialist.

I was dx at age 47, when there was only one CF Specialist at Massachusetts General Hospital and his work load was to great to add me as a patient. I know what it is like to be treated for CF by a "local Doctor" and this looks like that to me.

Bill

 

[Gammaw]

I wondered too Printer. I can't imagine a CF Center not notifying someone they cultured pseudemonas, but I also can't imagine a regular docs office running a culture and coming up with pseudemonas. It usually takes a CF Center or hospital lab to come up with that one.....

 

[Aboveallislove]

I wondered too Printer. I can't imagine a CF Center not notifying someone they cultured pseudemonas, but I also can't imagine a regular docs office running a culture and coming up with pseudemonas. It usually takes a CF Center or hospital lab to come up with that one.....

That struck me as weird too, but I seem to remember several late diagnosis saying their doctors said the pseudo was likely there for a long time....I'd still want to know and hit hard and definitely should ask and see why, but I wonder if that played into it and with no issues that's the approach they took then,...now of course is different and great point re getting seen before Tuesday!!

 

[imported_Momto2]

Some excellent advice given here. I would second getting him on TOBI asap. Sleep is also imperative for healing. If after he starts the TOBI he still cant sleep, might want to think about a med that can quiet the coughing for 6-8 hours while he sleeps. Then really do lots of PT during the day to clear the stuff out. As for the cipro questions, I have had 3 different rxns over time- felt better within 48 hours, took almost a week to feel better, didnt help at all. I do think your son need a culture of his sputum ASAP so you know what you're dealing with. (since it sounds like the PA is from an older culture?). A doc can call in an order for a culture and TOBI so you could get that done right away. It may be something other than PA causing the issue (hence a fresh culture), but if he did culture it relatively recently, it definitely worth treating since the odds are against it going away on its own and it is probably at least contributing to the problem. Please let us know how he does.

 

[fel]

Thanks for all your caring replies. I'll try to answer all the questions in turn.

First -- he felt somewhat improved today so I did not take him to the ER. He is taking Musinex and Cipro, and of course Pulmicort. The head CF doc at his center has seen him since he was 18 (prior to that he was at the child center). The doc prescribed the Cipro, and left it at our discretion whether he was sick enough he had to go to the ER. That was the motivation for my post -- I wasn't sure what "sick enough" looked like. I have CFRM and when I was his age I would get sick frequently and go to the ER. They would always just give me IV fluids and send me home. Now I have a *serious* phobia to IVs after all those incidents. I was also on antibiotics for a lot of my childhood and on prednisone frequently in my 20's. Furthermore both my children have CF so I just don't know what normal sick looks like. My older son had a cough for years and I took him to every type of doctor, only to be told in the end that the cough was "behavioral". (He has a history of autism as well as the CF).

Thank you all for your concern about the Pseudomonas. i am very concerned also, and shocked that we were not told about it. I can't help but think that there may be some downplaying of his CF because only one gene has been found despite sweat chloride levels in the 60's-70's.. I have not been going to his CF appointments but will go to the next one to advocate for better care. He can have trouble navigating some social situations, and I think this shows he needs me there.

Aboveall -- The doctor did not give him the choice of going into the center to admit through the center. That is because it is a holiday. Last time DS was this sick they saw him at the CF center and they gave him the Cipro. Then I had him move back into my house for a month so I could monitor. Now he is back living on his own.

Windex -- he can't take Bactrim. Last year he developed a serious adverse reaction to Sulfa (face and mouth puffed up like a balloon.)

 

[Aboveallislove]

just to clarify: I meant call on call CF doctor to have him admitted.
Also, I wonder if they told him about the pseudo and maybe he didn't "get" it? Glad he's starting to feel better. Hugs.

 

[fel]

Aboveall -- yes it is possible he didn't understand he had PA but I doubt it given the doctors reaction when I called yesterday. The doctor said "he usually doesn't culture anything but let me check his records. Oh, yes, looks like he did culture pseudomonas". That does not sound like a situation where they were actively treating PA. Furthermore, he online medical records (they have a portal) don't record the culture results and mention nothing about treatment for PA.

I think someone dropped the ball. His lung functioning dropped substantially in May (15%) and this could have been the cause.

btw: those of you who experienced CF while in school -- I have noticed he gets sick every time he starts a semester (in late August and then after break in late January). Did any of you have that experience in college? Is there anything preventative one can do?

 

[Aboveallislove]

Augh. That DOES sound like they dropped the ball!!! I am so sorry. Hopefully you'll get some answers soon. Hang in there mom. Hugs and prayers,
Love

 

[ethan508]

I also vote for avoiding the ER (unless he has severe hemoptysis or a sustained high fever) and trying to get into the CF specialist soon to get a PFT, a sputum culture, and a course of action in regards to antibiotics and IVs.

If your son has a pattern of getting sick at certain parts of the year you could ask for a Px for Tobi or Cayston or Cipro to be used as a prophylactic during August and January. I use Tobi on an 'as needed' basis, with the agreement that once I start, I take the full dose for the entire 28 day cycle. So typically for me, I end up on Tobi during the month of December and usually in February but not the rest of the year.

As far as coughing and not sleeping, have him sleep upright in an easy chair or by being propped up with a bunch of pillows. I'll use active cycle breathing if awoken by a coughing fit in the middle of the night. ACB seems to clear out everything in a more mild and manged way which helps get back to sleep quicker. Also warm drinks and cough drops will sometimes help me relax and get back to sleep.

 

[Gammaw]

I was afraid of that. I would love to hear why he wasn't notified of the culture results and wasn't put on an antibiotic. Please do share when you find out.....