IV Antibiotics

[anonymous]

Hi everyone,

My daughter Samantha is currently on IV antibiotics (Tobra and Timentin) for the second time in six months. She is only 18 months old and has really never been able to last very long without being on an antibiotic. She is taking Zithromax on a Mon-Wed-Fri. schedule and is also currently on Bactrim. She has cultured Pseudomonas and Stenotrophomonas in the past, but her current, and last few cultures have shown normal flora. Even so, she was hospitalized because of rapid breathing, retractions and cough. Chest X-ray showed some atelectasis(sp?) nothing significant.

I have several questions. 1) Is it common to be placed on IV antibiotics based on past cultures even when the current culture is fine? 2) I am continuously told that being aggressive with antibiotics early on will help later. I know research studies have shown this to be true, but I would like to hear from "real" people. Has anyone had this type of experience? 3) We opted to bring Sami home on IV's, and I have to admit, I am having a tough time. I feel like I'm going to do something terribly wrong like inject an air bubble or leave something not sterilized. How have other parents dealt with this?

I know I am asking a lot of questions, but Sami was doing so well for a couple of months, and now I feel like we are sliding back into that CF hole. This disease does not give my little girl a break

Maria - mom to three daughters, the youngest, Samantha w/cf

 

[AbsintheSorrow]

Well I can't help with most of this except the question # 3. I do IVs at home myself, and have since I started them 4-5 years ago. Even this question I can't help with much, because though I worry about doing something stupid, it's my own health, not someone I care deeply about. However, my boyfriend is on this board also, and he helps a lot with my IV meds. He ALWAYS freaks out thinking he's gong to inject air bubbles, or not clean it right, or not do them in the right order, or hurt me, or pull on the line, etc etc etc. I will link him to this thread in a day or two and ask him to respond. It may help. Haha.

However, I will interject that I think home IVs are much better, especially for children. Hospitals can be scary, and being home makes it much easier to recover, in my opinion. Any tiny thing that goes wrong in the hospital freaks me out and usually makes me burst into tears, while when I'm at home, I'm much more relaxed. And if you ever have a question or concern, you can always call your home IV company and ask one of the nurses. <img src="i/expressions/rose.gif" border="0">

 

[Shayla]

Maria, I don't know a whole lot about the subject since all hospitals/clinics do things differently. I do know that the hospital I go to always looks at our past cultures when deciding what to put us on. Once they get the results of our new cultures they will sometimes make adjustments or change what we are on, but generally they find something that has workedin the past and try to stick with it. As far as what you said about being aggressive when the child is young, I have never heard this. I could see where it would be good. On the other hand I have also heard that taking something to often can cause you to become resistant. I will say though that if something doesn't seem to be working then ask if there is something else you can try. My sister was always told that they didn't want to pull out the big guns until they absolutely had to. By the time they finally did it was to late. The idea of doing IVs at home can go both ways. I don't think I have ever spent more than a few days in the hospital before going home on IVs. My siblings on the other hand would much rather stay in the hospital for the entire length of meds. You just need to see what you feel gets your child the best treatment, everyone is different.

--Ann
25 w/CF

 

[ladybug]

Hi, Maria.
Well, I recently also had a time when I went on IV's in Dec., got better for a few weeks, and then went back on IV's in Feb. for 16 days. I also know others that sometimes deal with a period where they have to be on antibiotics more frequent than usual due to a bug they can't seem to keep control of. If its any consolation, know that it is a common thing with CFers to have boughts of time when we have to go on IV's more frequently. Then, we can also go for years without needing IV's.

I also wanted to mention that with regard to going on IV's based on past cultures, I don't entirely agree with that. They should be putting yours daughter on meds specific to the bugs she's growing NOW. Different antibiotics target different bugs in different ways, and they need to know what she has growing right before they start the IVs. If they are using old cultures, and treating based on those, they may be missing the bugs that are currently growing and this in itself may make it so she's on IV's more often because the ones she gets prescribed aren't right for her infection. I would definately ask that they do a culture before she is put on IVs and then ask them to assure you the meds they're prescribing are for the current infections. If she's not culturing anything, is it possible it is environmental factors making her cough/breath rapidly? Coughing is a symptom of CF and will never go away, and often, when its humid or I feel short of breath, I breathe rapidly... Does she have other signs that the docs think she has an infection? If she is sick, I would say IV's are deffinatley warranted, but my personal opinion is not to overuse IV's unless necessary so you don't become resistant to them (I'm not a doc though, these are just my thoughts on the matter) <img src="i/expressions/face-icon-small-smile.gif" border="0">

I agree with Emily that being at home seems much more relaxing for me. I haven't stayed in the hospital for IV's since about 21 years old, and I don't miss it one bit. Although I give the medical profession alot of credit, I saw them make alot of mistakes too (hanging the wrong meds at the wrong times, not answering my machine when it beeped, etc. etc.) and even though I may make a mistake or two at home, I feel much more in control of my care. Plus, it is MUCH better infection control as hospitals are riddled with germs!

Good luck!

<img src="i/expressions/sun.gif" border="0">

 

[miesl]

My boyfriend has CF, and when he was on home IVs in March, we found it helpful to have a second person there to double check to make sure everything is done in the right order, and that none of the sterile equipment has been handled, all that stuff. Also, we prepared saline and heparin syringes ahead of time, and stuck labels on them so we wouldn't get them mixed up.

 

[farmfamily]

Hey hang in there I've been there. I've have two children with CF and there have been times they've put them in the hospital because of the syptoms you decribed even though their cultures grow normal flora. Then they treat them with the antibiotics from past cultures. It's really hard for me to know if I'm doing the right thing for my kids especially when it comes time for hospitalizations. I have told the Doctors that it's their job tolook at the medical stand point but it's my job to look at the entire picture. I do feel like my Dr was more agressive when they were little than they are now because as they get older they resent going to the hospital more. I too do antibiotics at home and find myself very stressed about doing it right and not causing an infection or missing something. But worse things have happened in the hospital with nurses and at least the kids are at home. I let friends and family help when they offer with food, errands, ect so I can concentrate on caring for the kids. Just look at one thing, one infusion at a time. Don't look at the whole course it is too overwhelming.
Just because you're daughter is having a rough time now doesn't always mean it will be that way. We've had times like that then we have really good years with no "tune-ups" so hang in there. There are good times ahead!
My kids are 12 and 7 now.


<img src="i/expressions/face-icon-small-wink.gif" border="0">

 

[anonymous]

Hi everyone,

Thanks for all the replies.
Emily- I agree that Samantha is happier at home. She hates the masks, gowns and gloves that surround her at the hospital. Not to mention all the unknowns doing her "clappity-clap" (CPT).

Sonia- You brought up a very good point about possible environmental issues. Samantha was cultured prior to IVs but it came out normal flora. They suspect that her problem may be more asthma related and have put her on prednisone which she has responded well to in the past. She is still coughing a lot, especially when she is laying down. They think it is related to reflux issues and have prescribed additional meds for that. Hopefully, everything will get better soon.

Miesl- My husband and I supervised each other the first few days, which really helped. Today was my first day on my own and it actually went o.k. I will take it "one infusion at a time" like the last post advised.

To Ann - I'm sorry to hear it was too late for your sister. It's so hard for me to find a balance in regard to IVs. I always end up thinking about how it will affect Samantha in the future.

Thanks again - Maria (mom to three daughters, the youngest Samantha w/cf)

 

[ladybug]

Maria,
I hope all works well for you. I am glad they're looking at other things that go along with the CF (asthma/reflux, etc...) I also have been on advair for awhile now (for asthma-like symptoms) and am also on a reflux med everyday. I find both these things help alot. Mostly, I can tell a difference when I don't take my reflux meds.... I feel very short of breath and kinda have a cough that doesn't produce anything. Sounds like your daughter is in good hands if they're looking at the overall picture of health. CF seems to bring with it alot of other health issues that aren't often picked up because many docs seem to just focus on lung infections. Best of luck to you and God Bless!

<img src="i/expressions/sun.gif" border="0">

 

[rachelsmom]

Maria,

I know how frustrating this is. My daughter Rachel is 8 years old. She too does pretty well but we are going through a rough time right now. She was hospitalized for two weeks August 26th - Sept 10th. She is still not completely better. She breathes hard and fast and has increased coughing. When people listen to her they always say she sounds real good. I am thinking then why is she breathing so hard and coughing. We just finished Tobi, Ceftaz, and Timentin. She is on reflux meds and inhalers for asthma. I feel like something is being missed somewhere. We are going in for Bronch and PH probe Friday.

As far as coming home to do the IV med, I much prefer this. This was the first time we stayed in the hospital for the entire two weeks. Rachel loved it because of course she was spoiled rotten but I felt she did not get any rest while in there and I was constantly worried about what she was touching and what germs she was going to pick up. At home you can try to stay in a somewhat "normal routine" especially if you have other children. I dont know how you manage, I am overwhelmed with one. Hats off to you!

As far at the air bubble I remember once I forgot to get the air out of the line and did not remember until after I started infusing the med. I freaked out thinking oh my god i am going to kill my child I just gave her an entire line of air. I paged home health and they said that probably that was not enough air to hurt her. It is nerve racking but I think the benefits of being home far outweigh the risks.

I caught the nurses at least 3-4 times about to give her her meds too soon or at the wrong time. How scary if youre not paying attention.

Good Luck and if you ever need to talk email me at Tdim5@aol.com

Teri

 

[anonymous]

Maria,

Thanks for the note back. It is nice to talk with others about how you feel. Only other CF parents could possibly completely understand what it is like. I just wanted to let you know that Rachel has had other Bronchs and she too has Pseudomonas and Stenotrophomonas. Sounds like we do go through a lot of the same things. Have you had trouble with the Stenotroph...Her doctors have told me that they are not sure how much of a role this plays in CF kids. What do you think???

I wrote down your email and will definitely use it in the future and feel free to do the same with me. I am ahead of you age wise with the CF and would be glad to share any questions you may have. Take care and again thanks for the advice.

Teri