Horrible cough

lovemygirl

New member
Hi,
My daughter does really well with her CF and over the past couple of months has been the healthiest she has ever been. She came off her nebulizer a month ago and we were thrilled. She is 6 so we explained to her that she would have to go on it again some day. We were happy but we are also realistic.
About a week ago she got a fever and then it turned into a bad cough. We started antibiotics a few days ago but the cough is probably the worst we have seen yet. It is near 10pm and she is still awake in her bed. She's been trying to sleep for about 2 hours now and can't because she keeps coughing. I tried clapping which we haven't done for many months and then I brought out the PEP but that is not helping to loosen it up either. I'm sad and frustrated because there is nothing I can do to make her feel better and get the rest she needs.
I'm not looking for any advice...I just needed to vent. I know there are tougher times ahead but it is so hard to see her when she is not feeling well. It is tough when things are going so well and then turn so quickly and you don't even see it coming. I really hate this disease and wish I could take it from her.<img src="i/expressions/face-icon-small-sad.gif" border="0">
Friends, family and co-workers don't understand and on days like today it just seems to make it that much harder.
 

fourkidsmom

New member
I am so sorry to hear about your little girls cough. I know you stated you are not looking for advice, but I am concerned because she is not doing her breathing treatments. Our 5 yr old son has done 4 a day since birth, and that is when he is doing really good. When he is sick he does them every 4 hours around the clock. I am no doctor but I would think that would be the case with your daughter, or maybe not 4 a day but 3 or whatever. This just really concerns me, I guess it is kind of like maintenance and it is impossible to undo lung damage. Maybe I am wrong, I hope you get other replies soon because I am interested what everyone else has to say. I hope I didn't upset you by responding, I am just a concerned mother and I know that those coughs in the night are terrible--there is no sleep for anyone!

Fourkidsmom
 

amber682

New member
I just wanted to let you know I completely understand. My 18 month
old son seems to be just starting to get over a terrible
cough/wheeze that lasted about a month, but with no other symptoms.
It was the worst cough or wheeze he has ever had. He too was
coughing through the night, and it was awful to listen to.
 Almost every time he got riled up from playing, running,
crying, etc. he coughed until he gagged and spit up a little (maybe
mucus?) Vincent just started the five meds/treatments the dr.
prescribed and seems to be starting to get much better. It really
made me worry too, and I wish almost every day I could have CF
instead. I'm sure every parent on this site feels that way. He
always seems in perfect health, you'd never know he has CF. I think
I just do CPT and give him some enzymes and vitamins and try to
push the fact that he has CF to the back of my mind. Then something
like this happens and everything comes flooding back. It kind of
forces you to face things. Just remember that this will pass
and even if your friends, family, or co-workers don't seem to
understand, plenty of us do.
 

NoExcuses

New member
I bet stopping the breathing treatments has lead to her getting an infection... I would really question your doc as to why breathing treatments were stopped.....
 

Ratatosk

Administrator
Staff member
DS has been on 3-4 breathing treatments & CPT since he was a few weeks old. The way it was explained to us is that CFers are born with healthy lungs and we want to keep them healthy, so we need to practice good lung care. Minimum of two treatments a day, but more is better. Our standard is 3, unless DS gets a cold, then we increase it. I was concerned recently when I read an article about a newly diagnosed CFer in our city -- the mom, who was a nurse, was quoted as saying "if the lungs become affected, then there's some stuff we can do to take care of that". I wanted to call her up and say -- IF!? If?

I'm so sorry your child is sick and I'm sure you're angry, scared -- feeling helpless. But IMO, you need to be proactive in your child's health care and keep those lungs healthy. Even if she's feeling good, I would suggest doing CPT and breathing treatments on a regular basis. Keep those lungs healthy. Get stuff moving up and out of the lungs so it doesn't sit there and stagnate -- get an infection. L
 
T

tammykrumrey

Guest
It is so heartbreaking to feel that you can't immediately help your baby. I do have a question though. By clapping, do you mean CPT? Does your CF doctor not have you doing this daily? That is so important to do. My daughters have the vest for their treatments (actually just received the second one yesterday so now each have their own machine-yahoo!) every day. Sometimes I do them by hand for my younger one if she just wants a little variety. But one of my girls needs two vest treatments (we call them 'love pats' in our house) per day, and more when she is sick. Sometimes four times a day when her cough is really bad. And the other is good with one. Her lungs are great, but we still do at least one for maintaining that good health.
I hope she finally got some sleep and the antibitoic begins to help her.
 

fourkidsmom

New member
lovemygirl,

I also wanted to mention (from my above post) that in our sons 4 breathing treatments a day he does get the pounding(that is what we call it) or clapping every time. Since having the vest for a year now he get 2 with hand pounding/clapping and 2 with the vest for 20 minutes each. I sure hope you check with your doctor on why her treatments were stopped. That makes no sense to me.

Good luck
 

Ratatosk

Administrator
Staff member
Lovemygirl,

I've been thinking about you all morning long and I feel bad that you've come here to vent, talk about how stressed and worried you are and some of us are "getting after you" regarding not doing CPT. We've probably all been in your shoes, have a sick child with a cough and worry about them, worry about the future. We know how stressful it is. I'm normally pretty confident when dealing day to day with ds, but something out of the ordinary -- a cough, runny nose, fever or barfing at the dinner table and I'm a basket case.

That said, I would encourage you to talk to your health care provider about CPT -- why they don't encourage you to do it as a preventative. And even if for some reason they don't think it's necessary, I would encourage you to do CPT at least a couple times a day. Or ask abouat the possibility of getting the vest for your daughter.

I hope she's feeling better and I hope you're feeling better. I hope I didn't come off as being overly critical regarding your daughter's care. You're doing the best you can with the resources, advice that's been given to you by your doctor, but IMO, keeping those lungs happy and healthy is by far one of the most important aspects of preventative care.
 

concernedmom

New member
I'm new here so have only been reading, not posting.  Just
wanted to say that Lovemygirl states that her dd does PEP.  
 I'm not familiar with it so don't know how it works but do
know it counts as physio.<br>
<br>
Lovemygirl, when my ds gets like that, I find it helps if he sleeps
in a recliner in a semi-sitting position.  Also, did they do a
culture?  If not, maybe the antibiotic is not the right
choice?  Last thought, maybe she needs some prednisone?
 That helps ds immensely.   Hope she feels better
soon<img src=""><br>
<br>
Back to my reading...
 

lovemygirl

New member
Hi everyone,
Thanks for the concern about her CPT but there is no need to be concerned. We are still doing PEP and revert to clapping if she is too tired. We only took her off the nebulizer because she does not need the tobramycin right now. She does PEP at least twice a day and we have increased it on our own due to the cough.
She is feeling somewhat better today and The Septra seems to be kicking in and she still has over a week to go on it.
Thanks for your concern everyone but she is doing her physio and we do not miss her treatments. I appreciate the concern. It is nice to know that there are people who understand and also want what is best for her.
 

amber682

New member
I'm glad she's starting to feel better! My son is just getting over
his cough, which was really bad and we almost got admitted for it,
and it feels like a weight has been lifted off my chest!
 

Giggles

New member
I was diagnosed when I was two and I am soon to be 35. My parents did chest PT twice a day and up to 4 times a day when I was ill. If you have a vest for your child I would have her do it 4 times a day while she is sick. I also would ask the doctor about breathing thru the nebulizer albuterol and also if she could do a 28 day treatment of tobi. I would also ask about and oral antibiotic. I can totally relate to coughing all night and not getting any sleep, it still happens.

I find if you aggressively treat the CF early on it is better in the long run and creates great habits for your child when she is going to have to one day take care of herself.

I would talk to the doc about getting on some oral antibiotics and neb treatments along with doing either chest PT or vest 4 times a day. I find you have to be super aggressive the minute the cough is elevated!

Hope she feels better soon and so sorry!!!!

Jennifer 34 years old with CF and CFRD
 

Ratatosk

Administrator
Staff member
Last spring DS developed a head cold, which turned into a junky cough -- something he's never had before. Called the local CF doctor and was told "CFers cough" that's what they do. Fortunately we had a regular CF appointment in the City a couple of days later and the doctor put DS on Cipro. By the end of the weekend he was feeling much better and was clearing up. Those two days before going to the CF clinic in the City I sat up all night listening to DS breathe, did extra CPT and Nebs (albuterol & atrovent), extra tubbies and steamed up the bathroom really good and cried and worried and raged. I'm glad she's feeling better. Liza
 
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