COUGH WITH CONGESTION???help!

[anonymous]

Hi there...
My 2 month old has a terrible cough with LOTS of nasal congestion. I have taken her to the cf clinic and to our afterhour doctor's care, and they don't seem to be concerned. The say it is not in her lungs, it is in her sinuses. It seems to be worse when she wakes up from laying down? We are doing xopenex 2x day with CPT as well as saline drops with bulb suctioning several times a day. I feel like it has gotten worse this week?
I am getting a little worried that it might turn into something like pnemonia? I guess my question is does this sound normal? Will she always cough~and i mean cough so bad that she can't catch her breath and also gags on her phelgm so much she throws up!! Or does this happen when there is a problem?
Also, what are the signs of pnemonia? I am taking her to the pedetrician tommorrow. The cf clinic said to go there first, i will be at the cf clinic next week. She hasn't had any fever
Any thought or suggestions please??
Thank you!
Blythe
mom to Brinly w/cf

 

[belinda]

Hi I'm new to the forum but what you said sounds kind of alarming. I am a mother of a three month old son with CF. You are not the only one struggling with this but what you said about your CF clinic and pediatrician being "not concerned" is sad. Is there another clinic you can go to because when we call our childrens hospital CF clinic they are always on top of any concern we have and always recommend that we bring our son in to discuss what may be wrong.

Good Luck and God Bless

 

[anonymous]

Blythe,

It's too bad the clinic/dr isn't listening to your concerns. My son has coughed a lot - so much, at times, that he has gagged too. If the cough is this violent, I would contact your cf clinic again. If they don't connect you through, then demand to speak with the pulmunologist on call (there should always be one at your clinic or children's hospital). Many times, unfortunately, primary care givers don't understand cf well.

As far as the cough increase as your daughter sleeps: Have you tried elevating her head? When my son was just a baby, we would place a pillow UNDER his crib mattress so that his head was somewhat elevated. I hope this helps. Good luck and keep us posted on little Brinley. She'll be in my prayers.

Carey

 

[anonymous]

Hi my name is Stephanie and i am 20 yrs. old with Cysticfibrosis. A young child with cf espacially because thier lungs are jus being fully developed with tend to cough alot more. the phlem in the lungs will cause that cough is it very important to break that up so that it is not thick and stringy otherwise it will choke the baby, it will also make it easier for it to come up. I take pulmazyme which is inhaled through a neb. that thins it out. yes you should always be concerned about a cough sure the baby will always have some type of continuious cough but not as bad as you explained. the signes of phn. are coughing up big amounts of blood, if the mucus is very dark and green out of the ordanairy. it is hard having cf but as the parent you hold the keys, take care and love that child, i will be praying for you and the baby take care.

 

[arabeth]

I would have to agree that you need to call the CF Clinic again. It is bothersome that they aren't seeing her right away. And I have learned the hard way to follow your instinct as a mother. You know when something is wrong, when your child is worse than normal. No one knows that like you do, not even the doctor. Persist until you are satisfied. If it makes you feel any better, it seems unlikely to be pneumonia without a fever, but of course I'm not a doctor. And that doesn't mean it can't become pneumonia if she doesn't get better. I would certainly call again and if you don't get the help you want, consider taking her to the ER. They should call the pulmonologist at that point and they will see her that way. Anytime I've ever had to take one of my girls to the ER and I mention CF, they always call our CF doctor for advice. And sometimes the pulmonologist may take it more seriously hearing it from another doctor rather than from Mom (sad to say, but I know it has happened to me)... Best of luck to you and Brinly. I hope she is feeling well very soon!

Oh, by the way... yes, some cough is normal and she will probably always have that...but no where near to the extent you described. Not to the point of losing her breath and vomiting. That seems excessive to me. Again, good luck!

 

[anonymous]

Both Sophia and Jack had pneumonia when they were both around 4 months old. They have not had any major problems since thankfully. What I learned is that an infant with cf who has a cold/cough can quickly get pneumonia. I was not good at picking up on the signs that they had pneumonia. I knew they were congested and coughing a bunch especially at night. I even had them into their pediatrician or cf doctor because of the cough. My mom had to point out to me both times that they were having a difficult time breathing by looking at the retractions (skin around the neck/lungs pulls in a lot when they breathe).

When I was concerned about Sophia excessive coughing/retractions her cf doctor/nurse did not take my concerns serious enough. They did not return my phone calls. I ended up just showing up at the clinic demanding to see the doctor. It taught me that I HAD to be the one in charge if I thought something was wrong and be demanding if I think something needs to be done. Neither Sophia or Jack had a fever with pneumonia. Also, ask for a chest x-ray. A number of doctors had listened to them when they had pneumonia and said they sounded clear. It wasn't until an x-ray was taken that they could see mucus in the lungs.

To answer your other question about whether she will always cough, based on my experience with Sophia and Jack, no she won't. I had the same fears with both of them. They both coughed a bunch from about month two to month 6. I think it had to do with their small lungs and initial viruses that they caught. Also, I think reflux had something to do with it too. We switched to a stronger drug (Prevacid) and it seemed to really help the coughing. It also gets better around month six when they start to sit up. Sophia really coughed a lot and I just kept thinking it was what a cf baby/child did. She is now three and hardly ever coughs.
Hope this helped!
Sharon, mom to Sophia, 3 and Jack, 1 both with cf

 

[anonymous]

I am not a parent, the only thing that I can tell you is that many times I have had cough attacks that have made me throw up. So it can happen.

Dave 29 w/cf

 

[anonymous]

Hi Blythe - My son who is now 6 1/2 started out the same as what you are describing. When he was an infant and would have a constant cough and nasal congestion, it almost always turned into a sinus infection and still does. His cough would get worse and even spasmatic upon a change of positions and when eating. It would be due to the huge amount of sinus drainage down the back of his throat. We would do as the other's suggested, such as have the baby sleep on an incline and the saline drops as well as warm baths to help thin the mucous and help it drain out. Quite often and sometimes even now, he coughs enough that he throws up due to the need to get rid of all that mucus and the spasm of his cough as well as not being able to spit out just the mucus. It is so thick and sticky, sometimes it clogs up their throat and that is how they clear it. I also remember that his mucus was too thick to sometimes come out properly with the bulb suctioner and we really had to thin it quite a bit with the saline. It can be very frustrating, and as babies - sometimes their larynx or trachea is still not shaped and developed fully which makes this kind of cough sound even worse. As one of the other's have said, check to see if their neck or chest is retracting and if their nostrils are flaring; these are indications that the baby's breathing is compromised and the dr. would def. want to address this immediately. The only other thing I would def. stress is if you feel that something is not ok and the dr. isn't hearing you, keep pushing. You know your child better than anyone. Best wishes and I hope your daughter is feeling better soon!!!
Jo Ann

 

[anonymous]

Hi There,
I am currently going through the same thing at the moment.
My16 mth old son has had a flu for 7 days now and we have already been into the Emergency room with a raging temperature.
They did a chest x-ray and saw mucus in his lungs but no pneumonia, and his chest was clear.
He has had a very thick cough for a week now and we have been on anti-biotics as a precaution.
But he has vomited a few times from coughing so hard and fortunately for me I have a wonderful CF doc who is on the end of the phone for me so we have been talking regularly about his symptoms.
It is so scary, I really thought it was a chest infection but no just a common flu.
All I am doing is taking his temp regularly and making sure he is ok in himself, they have said if he becomes lethargic, loses his appetite or gets a fever to bring him straight back in.
I hope we don't have another flu for some time yet!
Rebekah
Mother to Matt 16mths w/cf

 

[anonymous]

Thanks for all of the info and insight. We took Brinly into the CF doctor and he thought her cough was wet and her weight had dropped. She was put on Tobramycin (IV) and another antibiotic. She also went on Pulmozyne. Fortunately she mostly just suffered from a sinus infection that was getting out of hand. She bounced back amazingly well. By the middle of the next week she was not congested, and after not throwing up she's back to packing on the weight. She' ll be coming home when her IV treatment is done.

Thanks again,
Brad and Blythe
Brinly's Dad and Mom

 

[anonymous]

Ah honey, I am sorry your little one is sick.

My son is on Xopenex every 4 hrs and he is also on Pulmicort twice daily.

Keeping your little one in my prayers.

 

[anonymous]

Ah honey, I am sorry your little one is sick.

My son is on Xopenex every 4 hrs and he is also on Pulmicort twice daily.

Keeping your little one in my prayers.