Anyone started IV antibiotics instead of orals for their first ever infection?

M

MyBabyCeline

Member
I was wondering if any of you were ever put on IV antibiotics for your first infection?
My daughter is 4 years old, was diagnosed with CF at birth by newborn screening and has been very healthy since. She recently started coughing (about a month ago) and her doctor insisted on doing a sputum culture before prescribing her anything. It was a very hard couple of weeks trying to teach her how to cough sputum and then finally we were able to do it. She cultured Hemophilus Influenzae and her doctor immediately wanted to admit her and give her IV's for 10-14 days (she also developed a low grade fever 2 days prior to the culture results but she is still energetic and doesn't look run down with sickness). My husband and I were not prepared for this by any means and we sought a second opinion. The other doctor had a different approach at mind. He said he preferred to put her on an oral antibiotic for 2 weeks and then culture again and see. We were a little bit relieved and decided to go with the second opinion. This all happened today and she just took her first dose so we're still not sure how/if it's going to work out.
What I really would like to know is that whether the usual approach is to start orals and then revert to IV's if that didn't work? Or is it normal to have IV's immediately? Especially that this is the first time she ever had an infection.
We don't have CF centers in or country and we have to do with pulmonologists and gastroentrologists who have little experience with CF and who have had little training regarding it while they were specializing.
I'm sorry if my post is too long but I'm really looking for some answers as I'm beyond confused and overwhelmed at the moment.
Thanks in advance.
 
2

2005CFmom

Super Moderator
My daughter has only been on IV's twice, both times we tried orals first. I think it is pretty standard to try orals first unless the culture comes back with a bacteria that shows resistance to oral antibiotics.
 
A

Aboveallislove

Super Moderator
Also my understand no is in u.s. They only treat h- influenza if it is causing problems. Do culutepred for about a year with no treatment at all and hasn't for two years. It would seem then that oral makes sense as starting point.
 
R

Rebjane

Super Moderator
I take it you are not in the United States? My daughter is 12 and STILL can not produce a sputum specimen(especially on demand). They obtain a "cough swab" culture on her. Basically have her cough and the nurse uses a sterile swab and gags her and and typically if there is mucus there and /or bacteria they will get the culture that way. A sputum coughed up into a cup of course is better but kids may mot be able to do it. Plus, the mucus can be sticky and just won't move.

We do start with orals first..It can take 5 days before they start to take effect. We also increase chest PT or VEST treatments, do extra nebs..Encourage lots of fluids. My daughter also sometimes needs an oral steroid if she starts getting wheezy or tight with her cough.

Also, We usually use oral antibiotics for 14 days. The dosage is usually on the high end .
 
R

Ratatosk

Administrator
Staff member
DS cultured h-flu off and on when he was a baby until he was about 2 1/2 years old. And it wasn't usually treated. If he had symptoms when culturing it was usually a sinus infection, nasty runny nose, sometimes and ear infection. No cough. He'd get put on oral antibiotics Augmentin for the sinus and ear infections for 2-3 weeks. When he was 2 1/2 he was put on azithromycin which is prescribed not necessarily for the abx properties in people wcf but for inflammation, to help with increased lung function... his doctor noted that as a plus it'll probably take care of the h-flu. And it didn't. Hasn't cultured it since.

When ds does get a cold, cough, we increase cpt (physio) from 3 to 4 times a day. Increase fluids, try to get him to get more sleep. Also, we do sinus rinses to clear the gunk out of his nose.
 
W

welshwitch

Guest
Yup, but it wasn't until I was 35. And I had pneumonia!
 
M

MyBabyCeline

Member
Thank you all for your answers. Yes we do not live in the US and we don't have the kind of care for CF that people in the US usually have. As I said we have to do with doctors who had little training regarding CF and that's what really alarms us on whether our doctor is taking the right approach towards treatment or not. Unfortunately this is the best we can get here.
Rebjane it was very hard to get her to cough out sputum but we kept pushing her to do it, the poor girl, because her doctor scared us that she would have to do a broncoscopy if she wasn't able to give a sample for culture. We actually feel like we've been bullied, and so bullied her into it!
We can't seem to understand how at first she kept us hanging without any treatment for 3 weeks and then now she suddenly wants to admit her for two weeks! I mean if she felt that she might need viguorous treatment shouldn't she have pushed for it earlier?? This is all still new to us and we really feel overwhelmed by it.
My daughter has been coughing for a month now and her cough has worsened with time. She also just developed a fever about 3 days ago. It's been 24 hours since we started the oral antibiotic so it's still too early to judge whether it's going to work or not. But I'm glad we took the decision and did not admit her especially that it would have been in a hospital where nobody knows anything about CF since, as I mentioned earlier, this is our only option here.
We also increased her nebs and cpt to 4 times a day and we're now hoping for the best.
Thank you all again.
 
H

Helenlight

New member
Hi MyBabyCeline, welcome to the forum!

Our 3.5 year old has cultured Haemophilus twice and both times recovered on oral antibiotics. It is possible that they wanted to start your daughter on IV's if she developed a fever, because it could be a sign the infection has deepened/worsened, but it's a good sign that she still has energy. There is a line for each person and each team when they decide IV's is what is needed. For us it is when our daughter's cough gets more productive, her breathing rate goes up and her weight plateaus or drops- those are the signs that tell us she needs to be on IV's.

It is good that you are taking care with the approach to treatment, and getting second opinions, but I would add that you need not be afraid of IV's or bronchoscopes if that is what is needed. These are generally routine things that people with CF can need, and can be very helpful when required. Our kids pick up on our feelings about things and will affect the way they are able to cope in the long run.

Take it slow and patient with the things she needs to learn (like spitting in a cup) she will get it all eventually.

Where about are you? Are there other people in your city/country with CF that you can get in contact with for support? What are your daughter's gene mutations? What other treatments is she doing?

Feel free to ask us anything here, we will be as helpful and supportive as we can :)

Helen
 
M

MyBabyCeline

Member
Helenlight said:
Hi MyBabyCeline, welcome to the forum!

Our 3.5 year old has cultured Haemophilus twice and both times recovered on oral antibiotics. It is possible that they wanted to start your daughter on IV's if she developed a fever, because it could be a sign the infection has deepened/worsened, but it's a good sign that she still has energy. There is a line for each person and each team when they decide IV's is what is needed. For us it is when our daughter's cough gets more productive, her breathing rate goes up and her weight plateaus or drops- those are the signs that tell us she needs to be on IV's.

It is good that you are taking care with the approach to treatment, and getting second opinions, but I would add that you need not be afraid of IV's or bronchoscopes if that is what is needed. These are generally routine things that people with CF can need, and can be very helpful when required. Our kids pick up on our feelings about things and will affect the way they are able to cope in the long run.

Take it slow and patient with the things she needs to learn (like spitting in a cup) she will get it all eventually.

Where about are you? Are there other people in your city/country with CF that you can get in contact with for support? What are your daughter's gene mutations? What other treatments is she doing?

Feel free to ask us anything here, we will be as helpful and supportive as we can :)

Helen
Click to expand...

Thank you guys it is really great that one can find such support and encouragement when there isn't much close around. I mean we ARE surrounded by supportive people from both my side and my husband's side of the family, but sometimes all you really need is talking to someone who's taking the same walk.

Helenlight we live in Jordan which is in the middle east. The medical field is quite advanced here and you can get great medical care when you need it, but when it comes to something as specific and somewhat rare as CF it is -unfortunately- not as satisfying as living in the U.S or Europe where CF seems to be better approached and cared for.

In October of 2012, when Celine was a little shy of 2 years old, we went to the US in order to do a full check up on her. We went to Texas Children's Hospital and did all the tests necessary. Her sweat test came back positive (the result was 70, which was already confirmed back in our country) and CFTR genetic sequencing was done. These are her results as they were written in the report:

**CFTR sequence analysis at BCM Genetics Laboratories confirmed that Celine and her mother have one non-working CFTR mutation, specifically c.2051_2052delinsG (2183AA- >G). In addition, results indicated that Celine and her father each have the c.2909-15T>G variant (3041-15T->G) in the CFTR gene.*The c.2051_2052delinsG* MUTATION and the c.2909-15T>G VARIANT are on separate chromosomes in Celine. Celine is negative for the 5T variant.
Celine is a CARRIER for Cystic Fibrosis. Based on reports from the medical literature and CF databases the classification of (i.e. clinical significance of) the c.2902-15T>G VARIANT is not conclusive; however, as Celine has no clinical findings of cystic fibrosis (i.e. was ascertained by Newborn Screen), the presence of this variant in Celine is judged to be NOT disease-causing in Celine.**

I know the report says she is a carrier and that one of her mutations is not disease causing. But the doctor we are seeing here disregarded that, and based on the fact that her sweat test was positive, decided that we'd better be proactive and act as if she had the disease. Now I'm not sure if this should be an entirely different post but I would love to hear what thoughts this great community might have on this.

She is also on Combivent (Ipratropium bromide and albuterol sulphate) + Pulmicort (Budesonide) nebs 3 times a day but only when she has a cough. We don't do the nebs if she is not coughing. And after all this happened and she cultured H. Influenzae we started to do CPT 2-3 times a day.

Thank you all again for listening and for all the great advice.
 
W

welshwitch

Guest
The carrier vs. full blown CF diagnosis is a thin line. Some evidence has shown that carriers exhibit some mild CF symptoms (I am positive both my parents show mild CF traits -- both coughing up phlegm in the am!) and my brother, whose status is unknown except that he tested negative for CF, seems to also have mild symptoms. I am the only one with a CF diagnosis -- done by sweat test in the early 80's and again genetic testing when I was 26.

Glad you are being proactive with your daughter's health. I hope she's only really a carrier and enjoys a long life free of many CF complications.
 
J

JustaCFmom

New member
Hi MyBabyCeline! Welcome to this amazing forum with a great number of helpful, informed people!
My son cultures Hemophilus Influenzae more often than not, and the doctors usually ignore it. He has never had IV meds yet, but he has had lots of oral antibiotics. (diagnosed at 8, now 11 1/2).

I actually don't live too far from you & there is an excellent center here in Jerusalem. Prof. Eitan Kerem heads the clinic and his wife, Batsheva, is a top geneticist who was on the team that discovered the CF gene. He might not mind helping you with your question... EitanK@hadassah.org.il I know Hadassah is very involved with the CF center in Gaza and I have even met the doctor who comes regularly to learn from the team here. There are *many* Arab patients at Hadassah in general and at the CF clinic also; and there is a lot of dialogue between the doctors too. Maybe you can find a way to get in touch with them?

The clinic here suctions out a sputum sample until the child is old enough to spit one into the cup. The doctors are very aggresive once any of my kids start coughing. They want to prevent as much damage as they can.

I don't know if you have a trampoline, but I highly recommend one. They have small ones if space is a problem. I saw an article from Sweden about doing therapy with trampolines and it convinced me to invest in one for my kids. http://www.cfww.org/docs/pub/edition11/05_trampoline.pdf

Good luck & I hope your daughter feels better fast.
 
M

MyBabyCeline

Member
JustaCFmom said:
Hi MyBabyCeline! Welcome to this amazing forum with a great number of helpful, informed people!
My son cultures Hemophilus Influenzae more often than not, and the doctors usually ignore it. He has never had IV meds yet, but he has had lots of oral antibiotics. (diagnosed at 8, now 11 1/2).

I actually don't live too far from you & there is an excellent center here in Jerusalem. Prof. Eitan Kerem heads the clinic and his wife, Batsheva, is a top geneticist who was on the team that discovered the CF gene. He might not mind helping you with your question... EitanK@hadassah.org.il I know Hadassah is very involved with the CF center in Gaza and I have even met the doctor who comes regularly to learn from the team here. There are *many* Arab patients at Hadassah in general and at the CF clinic also; and there is a lot of dialogue between the doctors too. Maybe you can find a way to get in touch with them?

The clinic here suctions out a sputum sample until the child is old enough to spit one into the cup. The doctors are very aggresive once any of my kids start coughing. They want to prevent as much damage as they can.

I don't know if you have a trampoline, but I highly recommend one. They have small ones if space is a problem. I saw an article from Sweden about doing therapy with trampolines and it convinced me to invest in one for my kids. http://www.cfww.org/docs/pub/edition11/05_trampoline.pdf

Good luck & I hope your daughter feels better fast.
Click to expand...

Hi JustaCFmom and thank you so much for your reply!

It is actually a little bit of a relief to finally meet someone living so nearby and who is facing this terrible disease. I remember reading about Hadassah before and I even contacted prof. Eitan Kerem once before and he informed that we can arrange for an appointment for him to see my daughter. We ended up going to the U.S and I completely forgot about it after that. It is great to know that there's a nearby center that we can refer to anytime we might be in need.

Last week, and as a complete coincidense, we bought a trampoline for my daughter and her brother. Not bearing in mind at all how helpful it would turn out to be. Our doctor was thrilled when she heard about it and said it was a great way for kids to clear their lungs while having so much fun.

What are the mutations that your kids harbor? I am interested to know if there might be any similarities in the mutations my daughter and your kids have since we come from the same region. My daughter's mutations are 2183-AA>G and 3041-15T>G.

Thank you again for replying to my question and I hope your kids are doing great and stay well always.
 
J

JustaCFmom

New member
My kids are totally Ashkenazi Jewish. I remember feeling certain that they wouldn't find their mutations when we did the genetic test. They were so much older, and had such a milder presentation, they must have rare mutations! Well, no, they have 2 relatively common versions: W1282X, and 3849 + 10kb C-->T. It is the second one which saved us from the more severe form of CF.

Enjoy the trampoline! :)

It could be your regular doctor could consult with Prof. Kerem. He is a very humble man. There is a doctor who speaks fluent Arabic in the clinic (at least I think it's fluent. He sees most of the Arab patients and speaks numerous languages). Although your English is excellent, so I suppose it isn't so necessary. It could put a child more at ease though. We are supposed to go every month, vs. the system overseas. They say they get better results with more regular appointments. I see it encourages the kids to keep on track.

I don't know how much they can really help, but the CF Foundation here might be able to put you in touch with other families sharing many of the same struggles. The page says that 1/3 of the CF patents here are Arab. It is hard to feel isolated. Another reason I love this forum!

We don't use a vest here. There is a physiotherapist who comes to the home once daily to do the CPT. ( To provide some background to the project mentioned in this link.)
http://cff.org.il/en/?page_id=580
http://cff.org.il/en/?page_id=504
And, just to share a bit about Prof. Kerem & his Gaza project - https://www.youtube.com/watch?v=L-Mxxm0th-Q
 
M

MyBabyCeline

Member
JustaCFmom said:
My kids are totally Ashkenazi Jewish. I remember feeling certain that they wouldn't find their mutations when we did the genetic test. They were so much older, and had such a milder presentation, they must have rare mutations! Well, no, they have 2 relatively common versions: W1282X, and 3849 + 10kb C-->T. It is the second one which saved us from the more severe form of CF.

Enjoy the trampoline! :)

It could be your regular doctor could consult with Prof. Kerem. He is a very humble man. There is a doctor who speaks fluent Arabic in the clinic (at least I think it's fluent. He sees most of the Arab patients and speaks numerous languages). Although your English is excellent, so I suppose it isn't so necessary. It could put a child more at ease though. We are supposed to go every month, vs. the system overseas. They say they get better results with more regular appointments. I see it encourages the kids to keep on track.

I don't know how much they can really help, but the CF Foundation here might be able to put you in touch with other families sharing many of the same struggles. The page says that 1/3 of the CF patents here are Arab. It is hard to feel isolated. Another reason I love this forum!

We don't use a vest here. There is a physiotherapist who comes to the home once daily to do the CPT. ( To provide some background to the project mentioned in this link.)
http://cff.org.il/en/?page_id=580
http://cff.org.il/en/?page_id=504
And, just to share a bit about Prof. Kerem & his Gaza project - https://www.youtube.com/watch?v=L-Mxxm0th-Q
Click to expand...

Hi again JustaCFmom,

Thank you for all the helpful links! I remember feeling the same when we tested my daughter. I was even very confident that she would eventually turn out to be a carrier, but a positive sweat test AND 2 mutations later we had to face the cruel reality. We also got one common mutation 2183-AA>G and a rare one that I can't find much information about 3041-15T>G. Well, I guess we just have to give our kids the best care we can and always hope for the best. I hope your kids stay well and healthy always :)
 
M

MyBabyCeline

Member
So here's un update on our condition.

We tried an oral antibiotic and that did not work. She still cultured H. Influenzae and her cough did not improve. Her dr insisted on the I.V meds and we admitted her for 3 days because we were convinced that nothing else might do the job. Now we're out on home I.V's (Thank God!!).

We visited the dr today for a follow up and she said her physical showed great improvement. The thing that really confuses us is that the dr really believes and insists that she has pseudomonas but that it's not showing in the cultures due to the overgrowth of H. Influenzae. She backs that suggestion up by the fact that a gram stain is showing gram negative rods but they are not growing in the culture. What relieves us a little bit is that the antibiotics she's taking (piperacillin/tazobactam and cefotaxime) cover both types. I know there's no guarantee with bacteria and that we could end up finding the pseudomonas after the H. Influenzae is erradicated. But we're at peace knowing that we're doing our best to treat her and get her back on track.

After the course of antibiotics is over (which is in 10 days or so) we will do another culture and see. Hopefully it will show nothing and we could put all this behind us..at least for now.

Thank you all for the support and replies. Please keep us in your prayers.
 
B

Beccamom

New member
I am glad you are home and she is doing better. Was her culture tested for sensitivities? Sometimes IVs are the only option if a culture is resistent to the antibiotics available in oral form. Sometimes sensitivity lab testing shows orals should work and they don't and then IVs are needed after orals are tried.

Best wishes


QUOTE=MyBabyCeline;1044609]So here's un update on our condition.

We tried an oral antibiotic and that did not work. She still cultured H. Influenzae and her cough did not improve. Her dr insisted on the I.V meds and we admitted her for 3 days because we were convinced that nothing else might do the job. Now we're out on home I.V's (Thank God!!).

We visited the dr today for a follow up and she said her physical showed great improvement. The thing that really confuses us is that the dr really believes and insists that she has pseudomonas but that it's not showing in the cultures due to the overgrowth of H. Influenzae. She backs that suggestion up by the fact that a gram stain is showing gram negative rods but they are not growing in the culture. What relieves us a little bit is that the antibiotics she's taking (piperacillin/tazobactam and cefotaxime) cover both types. I know there's no guarantee with bacteria and that we could end up finding the pseudomonas after the H. Influenzae is erradicated. But we're at peace knowing that we're doing our best to treat her and get her back on track.

After the course of antibiotics is over (which is in 10 days or so) we will do another culture and see. Hopefully it will show nothing and we could put all this behind us..at least for now.

Thank you all for the support and replies. Please keep us in your prayers.[/QUOTE]
 
T

Tipper

New member
Hi All,
Just looking for some advice. My son who has just turned 5 and now has to go in for his first IV treatments.
Similar to your situation, he has been on oral anti biotics for 2 weeks but this did not clear the infection so now we have to go in.

The plan is to stay 2 nights in hospital and then bring him home and do home IV's.

We have told our boy that he needs to go in for these IV's (without going into too much detail).

He is naturally quite scarred about it, does anyone have advice on what to say to their kid about what is about to happen?

Thanks
 
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