Coughing, infection cycle..

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mysticrose

New member
So my oldest DD is done with IV's AGAIN. We have been on this horribe cycle of meds. She will do oral antibiotics with little effect her PFT's drop to 30%, she starts IV meds, after those are done Dr. puts her on Cayston. After about a month of Cayston being done she is coughing horribly again and everything starts all over. The highest we have gotten her PFT's were 75%. So far she has only cultured staph even after a broncoscopy they have only found staph. Is it possible we are missing something bigger?
I told her doctor to look at the past year of what she has been doing. Every 3 months roughly she is back in doing IV's. She does Tobramyacin and Ceftazidime. The Dr is suprised the Cayston is helping since she hasn't actually cultured PA. I'm just worried that when she falls down to 30% we aren't going to be able to get her back up to at least 65%. Is there anything else we can try that might help?
Any suggestions of getting the doctors to listen to our concerns? This is the second clinic we have been to in this state. First was a military hospital and that was just horrible. We were there over a yr and they really dropped the ball.
I'm just concerned about her, she is 14 so we are entering those "fun" teenage yrs and from what I have heard those can be the hardest.
The other day she had a small asthma attack where her chest got real tight and hurt to breath. After 3 puffs of albuteral it got better. When I brought this up to the Dr yesterday he just kinda said "Ok she can do up to 5 puffs" and left it at that. There has been great debate with many doctors if she has asthma. So now I guess we just make sure she has her inhaler on hand at all times?

Ugg just so frusterated and trying to find some kind of answer somewhere.

Jen mom to 4 kiddos. 3 w/cf and 1 lucky red head.
 
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debs2girls

New member
Jen, I am so sorry you are dealing with this too!! We have never met, yet you just described my daughter to a T. Her dr insist on doing a minimum of two rounds of oral antibiotics before starting IV meds. He will agree with me that we are past orals but still prescribe them..all the while she is getting sicker. When he finally does put her in the hospital, she is so sick it takes between 4 and 6 weeks of two IV antibiotics to start showing improvement. Almost as soon as she is off, it starts over. Her pfts are in the same range on a good day as your daughter's.

Does your daughter have to be admitted before starting IV's or do you get to start them at home? Praying you find a solution, soon. We go to the clinic today to see what he is going to do this time.
 
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mysticrose

New member
I HOPE you guys get some positive news. Reading your reply brought tears to my eyes that we are not alone. Right now they are insistant she start in the hospital. My biggest issue with it is her blood sugars shoot sky high because she is just stagnant in the hospital. She's not allowed to leave the room, and there really isn't much she can do to keep them down. I am going to fight next time she start at home since we can have a nurse come to the house to get her peek and trough levels.

Does your daughter act like she is low on oxygen? When we go in DD will give a pulse ox of 88% but doesn't show signs of labored breathing until she starts running around.

Jen mom 4 kiddos. 3 w/cf and 1 lucky red head.
 
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jessconn

New member
You have both described what my daughter has gone through the past several years. She would do oral anti's then IV's and at first, she could go about 3 months, then 2, then 1 month til the whole process started over and she was sick again. After about a year of this, her Dr. Decided to check for atypical mycobacterium. This is a special culture they have to do. It would not show up in a sputum culture, so the doc was persistent and did a bronch to get the culture of atypical mycobacterium abscesses. I am hoping that this is not what your daughters have because the treatment is not better than what you have been doing. Just a thought to pass by your doc.

Missy
 
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debs2girls

New member
Well, we went to the clinic on Tuesday for all the good it did. Her weight is down some more, no appetite and little to no energy. Despite being on two other oral antibiotics since Oct 19th, he put her back on another one and added a steroid. I am to call him on Tuesday to discuss admit options. I am so tired of this. I know its only been two days but there has been no improvement yet.
 
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JENNYC

New member
Wow reading all of your posts just breaks my heart!! I can not imagine what yall must be going through both mentally and physically! I have no words of wisdom, I just had to let you know that I will keep yall in my prayers and I pray that yall can find the solution and what works best for your girls!!! Some times Dr's just don't get it because they are not living it!!
 
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momofcfprincess

New member
My daughter is 13 and has been in the same cycle since she turned 10! She has been hospitalized over 10 times for iv meds. My DD lung function has been consistently in the 30 and 40s. Oral antibiotics (cipro and bactrim and steroids) never help her. However a couple of months ago her doctor prescribed her a oral antibiotic called Omnicef and it has helped my DD so much! Its had the same results for her as being on IV meds and her lung function is now 55%.
These last few years she has been on such a downward spiral. Before 2010 she had only been hospitalzed once when she was 7. Her doctor says puberty is hard on girls with CF.
 
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mysticrose

New member
Debbie, I am so sorry to read about your daughter. This just sucks. Is she on a feeding tube? My oldest is and she gets 4 cans a night and drinks one during the day with half and half, whole whipping cream and a carnation instant breakfast. I hope this next round of IV's will help and they can find out what is causing these issues.

Jenny, Thank you for that information that is really helpful, I'm going to ask our doc when we go back in next month.

momofcfprincess, I remember yrs ago reading that the teenage yrs were the hardest on cfers because of all the changes they are naturally going through. That is great your DD is responding so well to Omnicef. I think it is one we have tried before, I can't remember anymore there have been so many.

So far my DD is about the same after IV's. She is now on oral meds and starting Cayston soon. I was getting her up and going on walks, we were doing really well until her arthritis flared up. Now she is walking like an old woman and OTC pain meds aren't helping. The rheumatologist just tells us to make her move, and won't give her anything for the pain. Poor girl tries to walk, stretch and just move but there are times she just has crocodile tears rolling down her face. I just don't have the heart to push her or let her possibly injure herself. I swear if we aren't fighting blood sugars, we are fighting lung bugs or joints tripling in size.

Jen mom to 4 kiddos. 3 w/cf and 1 lucky red head.
 
2

2005CFmom

Super Moderator
This has been a rough year for my teenage daughter as well. She was hospitalized for the first time ever in January and again in October. Her normal pft is 110%+, her highest 116%. When she was hospitalized, her pft's had dropped below 90%. She cultures staph and aspergillus (blood test show no ABPA). This past hospitalization her doctor did a bronch and was surprised at how much mucus was there.

She seems to be healthier now, than she has been in the last couple years. Her pfts after her last hospitalization have come back up to over 100% at last clinic, and she seems even better now.

I don't know if this will be of any help, but 2 things have changed since her first hospitalization.

1) She does inhaled vancomycin every other month. I don't believe that this is widely used. It treats staph, not PA. It isn't specifically made to be inhaled, it is an injectable drug that she takes via neb 2 times a day. If staph is your major battle, it may be worth asking about. I believe it is used more as an IV med to treat MSRA.

2) She started doing pulmozyme 2 times a day instead of 1. After the bronch, the doctor wanted us to try doing this since there was so much mucus. He said that studies have not proved 2x is better than 1x, but it was worth a try. I think it has helped her as she started bringing up a lot of plugs.

Hope things get better for everyone. Teenage years can be hard to get through, even without the challenges of CF!
 
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Printer

Active member
WOW!!! HELLO!!! Your DD has CF!!! For the rest oh her life (given the lack of a cure) she will be coughing and fighting infections. Coughing is her FRIEND. Coughing brings up the mucus that if allowed to remain will cause lung damage.

I really don't know what you are asking for.

Bill
 
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mysticrose

New member
GEEZE thanks Bill what WONDERFUL support much appreciated. Trust me I UNDERSTAND what the disease is, I was almost thrown in jail when she was a baby trying to find out what was wrong with her. So yeah I got a pretty good idea. Maybe instead of having such a smart alick response and actual reading the post you will see I was asking if anyone had this cycle but didn't culture anything major.

Also not sure if your aware of this but NOT everyone with CF coughs. My son rarely coughs, and when he does it is usually a cold. So please do me a favor and if you don't have something constructive to say just be polite and not say anything at all. I came here for support and possibly find clues to an answer not be treated like an idiot for asking a question.


Jen. mom to 4 kiddos 3/cf and 1 lucky red head.
 
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debs2girls

New member
My daughter is on Omnicef. That is his fallback antibiotic and it doesnt work on her either. So far, she isnt responding to the steroid either.

She doesnt have a feeding tube because she is a heavier cf'er for her age.

Her lung function is in the low 70's when well and lower when she is really sick, like now. He didnt even do them on Tuesday because of how much she was coughing.
 
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Printer

Active member
mysticrose said:
So my oldest DD is done with IV's AGAIN. We have been on this horribe cycle of meds. She will do oral antibiotics with little effect her PFT's drop to 30%, she starts IV meds, after those are done Dr. puts her on Cayston. After about a month of Cayston being done she is coughing horribly again and everything starts all over. The highest we have gotten her PFT's were 75%. So far she has only cultured staph even after a broncoscopy they have only found staph. Is it possible we are missing something bigger?
I told her doctor to look at the past year of what she has been doing. Every 3 months roughly she is back in doing IV's. She does Tobramyacin and Ceftazidime. The Dr is suprised the Cayston is helping since she hasn't actually cultured PA. I'm just worried that when she falls down to 30% we aren't going to be able to get her back up to at least 65%. Is there anything else we can try that might help?
Any suggestions of getting the doctors to listen to our concerns? This is the second clinic we have been to in this state. First was a military hospital and that was just horrible. We were there over a yr and they really dropped the ball.
I'm just concerned about her, she is 14 so we are entering those "fun" teenage yrs and from what I have heard those can be the hardest.
The other day she had a small asthma attack where her chest got real tight and hurt to breath. After 3 puffs of albuteral it got better. When I brought this up to the Dr yesterday he just kinda said "Ok she can do up to 5 puffs" and left it at that. There has been great debate with many doctors if she has asthma. So now I guess we just make sure she has her inhaler on hand at all times?

Ugg just so frusterated and trying to find some kind of answer somewhere.

Jen mom to 4 kiddos. 3 w/cf and 1 lucky red head.
Click to expand...

My function in life is NOT to support you. There is no magic wand. It is time to start listening to the Doctors. Trust me, yu are not that smart.

Bill
 
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Printer

Active member
Mysticrose:

Thanks for the CF info, I really appreciate your help. This CF thing is still very new to me. It was DUMB of me to try and tell you anything. Now, I did read your entire post but unlike you I do lack a proper education and my reading and comprehension skills leave something to be desired,

You do need to tell us more about how you were "almost thrown in jail". That seems to be so out of character for you. You seen to be so rational.

Bill
 
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mysticrose

New member
Just curious why you have choosen to pick at my thread when I was asking for help? The problem with your logic is I AM following doctors advice and she is getting worse. So I was wondering if there had been something maybe they were missing. Doctors are human and *gasp* do make mistakes.

Debbie I'm so sorry to hear about your DD.

Jen mom to 4 kiddos. 3 w/cf and 1 lucky red head.
 
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nmw0615

New member
There is always a chance a doctor can miss something. As you said, they are only humans. Has your daughter ever had a bronchoscopy done while in the hospital? Sometimes the bugs a person has don't always appear in a regular sputum sample because they're too deep in the lungs. My regular cultures only show me having PA, but when I had a culture done on music collected from a bronch, it showed I was also growing a fungus. Once we started treating the PA and the fungus, I started feeling better overall.

I hope you can figure out what is causing all this frustration for your daughter. Enjoying those teen years is something important.
 
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mysticrose

New member
Thank you nmw0615. Her last bronc was in January right before she was admitted. Supposidly this showed nothing but staph. A few years ago she coughed up a sample that showed Zygomycetis, a fungus. She hasn't cultured it since so her doctors are assuming it was a contaminated sample. The last bronc they did the doc said there was alot of really green stuff that came out. They thought for sure they would get a PA culture but nothing.

Jen mom to 4 kiddos. 3/cf and 1 lucky red head.
 
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jennywotherspoon

Guest
I have followed this thread and reflected on some of the advice/comments given. As a mother of an adult daughter with CF we have been through good times and bad like everyone dealing with this disease. There have been times when I have gone back to her doctors and asked them to revisit decisions, to try something else if things were not working. At the end of the day us mothers are not doctors and of course need to be guided by the doctors we trust but nobody knows or loves your child the way you do.

One thing I will never do is apologize for advocating for my child, for getting the best possible outcomes for her. Yes, CF brings infection and coughing is par for the course, but if your child is unwell and if you are like me you will leave NO stone unturned in trying to get improvement. There have been many times when we have turned corners because something else has been tried. So, don't want to rant here, just want to encourage and say to you keep striving for the best for your child and never be ashamed to keep asking the hard questions in order to get the right answers. At the end of the day us mothers need to know we have done our very best.
 
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