Medication reaction

[TICMOMOFF1]

Well we are back in for her 3 rd hospital stay in 9 months we have been here since Dec 13th. This has not been a good year for her. This go around we stayed closer to home since it was Christmas and we wanted to see if they are able to care for a CF patient because we have heard from our clinic that they sometimes treat CF patients here and want to do it more instead of us driving 4 hours to Indianapolis. Well never happening again unless they make drastic improvements. Anyways to the issues at hand of the medicine....we started Vanc & Zosyn on her first day here. She made improvements and really thought that we would be going home after a week on the PICC & meds her lung functions dropped.. They have never done this before. She had gotten a very mild rash here and there and showed them and since it was not itchy then they didn't think much about it. Then the fevers started and they come and go. Over time I kept telling them that this is highly un-usual for her and that I felt that it was the new med Zosyn. She had never taken it before but the Vanc she has always gotten Redmans if she does not take Benedryle 30 minutes prior to starting the Vanc. and no other problems with the Vanc. Also, we were told that they would work with the doctors up in Indianapolis closely but that was a lie, the doctors here want to just treat her and not include them in when things are bad. They also lied to us when we asked them to call her doctors up there to see what to do about the constant fevers and rash and worse lung functions. They never did call, they said first that they couldn't get anyone then said that they were waiting for a call back....it went on and on.. So yesterday Christmas Day she turned for the worse. She ended up with a fever of 104.8 and crying and saying that she was scared that she was going to die it took 6 hours to get that fever down. That was it. I told them no more Zosyn and to call the doctor if they wanted to. So of course I get a call from the doctor and she went on and on how it couldn't be the Zosyn and I asked her to call her doctors up in. Indianapolis and asked her why she didn't call them Christmas Eve and she says I just felt that it was a virus and I was going to treat it as a virus. UGH.....I told her no matter what that she was not to have the Zosyn again and if we tell her to do something then she better do it and how we were told to call anytime when there were concerns. So not even a half hour later she was calling me back and saying that the doctors up there said it was common for a CF patient to have a rash & to have a very high fever after 12-14 days being on the Zosyn and that we can skip the next 2 doses to see what happens and that we could change the med to Cefipime instead. Well she has missed 3 doses of the Zosyn and she is feeling much better, praise The Lord!!!!! & no signs of the rash either. So my theory is for her is that when she gets Redmans so severely with the Vanc and then she gets an reaction with the Zosyn then it makes it much worse and so she should not take them together again. Anyone else have this problem with Redmans with the Vanc and then also with the Zosyn?

 

[momofcfprincess]

Well we are back in for her 3 rd hospital stay in 9 months we have been here since Dec 13th. This has not been a good year for her. This go around we stayed closer to home since it was Christmas and we wanted to see if they are able to care for a CF patient because we have heard from our clinic that they sometimes treat CF patients here and want to do it more instead of us driving 4 hours to Indianapolis. Well never happening again unless they make drastic improvements. Anyways to the issues at hand of the medicine....we started Vanc & Zosyn on her first day here. She made improvements and really thought that we would be going home after a week on the PICC & meds her lung functions dropped.. They have never done this before. She had gotten a very mild rash here and there and showed them and since it was not itchy then they didn't think much about it. Then the fevers started and they come and go. Over time I kept telling them that this is highly un-usual for her and that I felt that it was the new med Zosyn. She had never taken it before but the Vanc she has always gotten Redmans if she does not take Benedryle 30 minutes prior to starting the Vanc. and no other problems with the Vanc. Also, we were told that they would work with the doctors up in Indianapolis closely but that was a lie, the doctors here want to just treat her and not include them in when things are bad. They also lied to us when we asked them to call her doctors up there to see what to do about the constant fevers and rash and worse lung functions. They never did call, they said first that they couldn't get anyone then said that they were waiting for a call back....it went on and on.. So yesterday Christmas Day she turned for the worse. She ended up with a fever of 104.8 and crying and saying that she was scared that she was going to die it took 6 hours to get that fever down. That was it. I told them no more Zosyn and to call the doctor if they wanted to. So of course I get a call from the doctor and she went on and on how it couldn't be the Zosyn and I asked her to call her doctors up in. Indianapolis and asked her why she didn't call them Christmas Eve and she says I just felt that it was a virus and I was going to treat it as a virus. UGH.....I told her no matter what that she was not to have the Zosyn again and if we tell her to do something then she better do it and how we were told to call anytime when there were concerns. So not even a half hour later she was calling me back and saying that the doctors up there said it was common for a CF patient to have a rash & to have a very high fever after 12-14 days being on the Zosyn and that we can skip the next 2 doses to see what happens and that we could change the med to Cefipime instead. Well she has missed 3 doses of the Zosyn and she is feeling much better, praise The Lord!!!!! & no signs of the rash either. So my theory is for her is that when she gets Redmans so severely with the Vanc and then she gets an reaction with the Zosyn then it makes it much worse and so she should not take them together again. Anyone else have this problem with Redmans with the Vanc and then also with the Zosyn?

My DD had a horrible reaction to Zosyn. Her body was covered in a rash...every inch of her body was covered in a rash, it was horrible. I hope that the reaction was caught early in your daughter's case. It's so hard when the medicine causes even more problems than they already have.

 

[Gammaw]

Where did you take her instead of Riley in Indianapolis? Could you just transfer her up to Indy?

 

[TICMOMOFF1]

We went to Deaconess Gateway here in Evansville IN. We were told by her doctors and many nurses and clinic staff that they have done many CF children here in this hospital and really wanted to be close to home for her. She gets so severely upset and withdrawn when she is admitted and not many people can visit when we are so far away from home 4 hours away that is. This hospital is only 20 mins from our house. Will not be making that mistake again.

 

[Printer]

Sometimes I feel like a broken record when I keep saying, CF Patients should be treated only in APPROVED CF CENTERS by CF SPECIALISTS.

Bill

 

[Gammaw]

As an Indiana CF parent, I can understand your admission to Deaconess. The Riley pulmonologists hold outpatient clinics at different locations around the State and I know there is one in Evansville. Is it at Deaconess? It suggests an association that may engender more confidence than it should. On top of that IU Health has now stretched their octopus like arms into a host of facilities and medical offices around the State, forcing docs into arrangements they might never have otherwise considered. Associating itself with facilities that should only care for ailing chickens and watering down the IU reputation. It's monopolizing medical care in Indiana in frightening and potentially unhealthy ways. Hopefully it can simply increase the standard of care everywhere rather than bring their own standards down.

The truth is we never know whether we made the best decision or not for sure. Admission to IU Health's Riley Hospital for Children is not a guarantee that something won't go wrong. Don't beat yourself up over this. Printer always seems a bit harsh in his quick judgments to me. I have long since come to understand that we all do what we think is best for our child under the circumstances, but that is no guarantee of success. The CF Foundation does not give us a handbook of best practices to follow. I wish they did.

You put your foot down when you needed to! Bravo! Many people would continue to simply follow the trusted docs advice. We are raised to question docs only reluctantly. We are trained to trust their expertise and judgment. Sometimes their human nature gets in the way and they are unwilling or unable to see that they need help in their decisionmaking. I will say I have learned that I can always pick up the phone myself and ask my CF Team for a second or third opinion on something another doc is doing or recommending - even when I don't think it's related to CF. I have even questioned the CF docs recommendation and asked another CF Doc for a second opinion. I also call the team before almost everything from dental work to school issues because I have learned that CF is involved in or affects virtually every aspect of my CFers life. I have learned that my CF Team is more likely to know something significant about my CFer that the other docs wouldn't have considered. It's a learning process and experienced CF parents and CFers are priceless sources of info. That why this forum can be so helpful.

I hope your daughter is doing well now. I think you did a great job of intervening.

 

[Gammaw]

An addendum - I checked the CFF.org list of approved centers and Deaconess is an approved "outreach center". They really should tell us more about what that means! But it sounds much more like an outpatient center. I suspect it's simply where the CF Team travels periodically to see CF patients in more remote parts of the state.

 

[Gammaw]

Will your insurance pay for admission to Louisville's CF Center? It's in a different state obviously, but less than two hours away and it's an approved Center.

 

[Printer]

Gammaw:

I understand that my short answers sometimes make me seem "a bit harsh". If you had brain cancer, you would want a brain cancer specialist. If you needed a heart bypass you would want a heart specialist. You would not go to a hospital, "because it is convenient". CF is no different.

I will try to seem less harsh, thanks,

Bill

 

[Gammaw]

Thanks Printer. Sincerely. I certainly don't disagree that our chances are generally optimized at an accredited cf center. But things happen there too. They happen no matter what you do. There's no crystal balls here. I also sympathize greatly with your approach....I tend to speak plainly myself and it's often viewed as harsh , tho that may not be my intent. Happy New Year to us all with hopes for great progress.....

 

[Printer]

My typing is so poor, I don't have the patients for long posts. I need a Dragon.

Bill

 

[2roses]

My DD had a similar reaction -- at a reputable CF Care Center -- to what I believed to be the abx. The docs weren't buying it, and the rash worsened and sporadic high fevers persisted. They even resorted to a cooling blanket to bring her temp down. It was 7 years ago and I can't recall the drug, but she got better after finishing the course of therapy. Fast fwd to a few years later and she had a similar reaction on Zosyn. Again the docs weren't on board with my concern. On home IVs the symptoms worsened and thank God the pulmonary fellow we saw in the clinic quickly determined a serious drug reaction called DRESS (Drug Rash with Eosinophilia and Systemic Symptoms) syndrome and readmitted DD immediately. Needless to say I was really ticked! Coincidentally my other CF DD needed IV abx right after the DRESS dx, and she was put on Zosyn, and also started with a familiar rash. We stopped that one immediately.

The reason I'm sharing this is this kinda stuff can happen anywhere. I'm pretty much a momma grizzly, but I'm not a medical professional and need to trust the team. I've come to trust my gut though with every new experience and will push back respectfully and actively troubleshoot (again respectfully) with the docs (and veteran nurses because they've seen everything). Don't kick yourself. You are being an excellent advocate and coming on this forum is part of that.