Cystic Fibrosis Support Group

Nicole I hope you have alot of family and friends to lean on, if not take a deep breath and love your kid. You have a long road of issues to go. Get some books and learn and find a good CF doctor. Try to change your fear into something more productive like resolve or knoweledge. I too went thought this it is scary but My daugther is 17 now and I still have fears. Good Luck and I hope you and your family have a happy new year. TJ

Hi Nicole,

First I am not a parent of a CFer, I am a CFer and I am 50 years old in February.

When your baby gets his Albuterol treatment he may often sound worse than before because the mucus is breaking loose from the lung and as the mucus loosens wheezing will increase until the blockage or restriction is cleared enough to eliminate the vibration of the lung wall or mucus when "too much" air is drawn across the area until it makes the wheezing sound. "Too much" is defined as enough to cause a wheezing noise which may be the normal amount or less than what he normally breathes.

In contrast,not that this is likely to happen with you being as vigilant a mommy as you appear to be, but theoretically it is possible (VERY UNLIKELY) for a person to have all the inside of the lung coated with a thin wall of mucus to where there is no blood gas exchange and as long as there was no "pinched" area there could be NO WHEEZING but the person would eventually die, so don't think about increased wheezing as neccesarily a bad thing.

If you can help your baby gt the mucus out of his lung using chest or back percussion and a slight tilting of the body head down to assist drainage then your baby should do much better. I (as an adult)have an inversion table which turns me upside down when I do a breathing treatment so the mucus comes out easier with the assitance of gravity.

(VERY IMPORTANT) Talk to a respiratory therapist (not neccesarily a doctor) and learn CPT (chest percussive therapy) for infants. I am sorry that I don't know how to do it because the "old school" idiots I saw for years did NOT test me for CF because I was still alive at age 20,30 and finally 46, and so I was never exposed to the treatments for children but despite my early doctor's best efforts I just wouldn't die.

Finally after doing my own research I demanded a Salt Test (at age 46 or 47)and then a genetic test and now here I am with some GOOD doctors at UAB Birmingham. I am now preparing to get some replacement parts and am waiting on two new "airbags" at which point I should live long enough to die a very old and grumpy grandfather helping other CF survivors and their families. Good luck and God bless you and yours. I hope this helps you reduce your anxiety and gives you hope and that your child will outlive you. I buried my mother in May of this year, and although I miss her, that is how life should be.
Take care,
Charles Hicks Ed.S., LPC

My 6 year old son was just diagnosed with CF at the beginning of December. On Christmas eve morning he started coughing so much that I called his doctor at 2:30 in the morning. I was also told to but him on Albuter treatments. Just like you I noticed that the coughing seemed to get worse after the treatment. When I talked to the nurse, who called to see how he was doing, she told me that that was good because he was getting out the mucus that was in his lungs. He was put on a Antibiotic for a URI.

I know this is overwelming. I am a single mom with three young children and even at 35 I am also overwelmed and often times scared. Just take a deep breath, take it one day at a time, and do what you are doing. You are doing a great job. Feel free to drop me a line if you need to talk.

Corrine

it's funny how people find out we have cf kids and go my that must be hard how do you do it... well i say we sit in a world of constant wonder if what we are putting our kids through is worth there very strained and almost worsening conditions to make them better... everyday my girl even if clear has hypertonic saline with pari pep to clear her chest this is new from percussion (which i love for mucus treatment) and it makes her so sick for the afternoon some days i wish i could let her have days off to make her feel normal for a day .. But like kaiser said with out the wheeze we wouldn't know the crap was comming up and if it stays there they get worse i am 26 years old my girl is 9 at 17 i had her and i know all to well how hard it was to cope in the beggining even now i am called a panicer i kept her home for 2 weeks when swine flu went through our school cause i just don't want to loose her to something stupid like that. please be vigilant but don't be afraid you are his best guide to his health if you are not sure about his treatment ask ask and ask again for help hell thats what the doctors and nurses are there for.. if i didn't push for my girl to be looked over they would have sent her home with pnumonia and a 39 decree celsius temperature. they recored 35.9 with a ear thermomiter i insisted on a under arm one and wouldn't leave till a resp doc did a x-ray.. sure enough mums instincs were right.. sorry for rambeling i just want you to know it gets easier to spot but stays just as worrying we just seem to get used to it

Hi nicole. My name is matt and i have a son that just turned 1 and he was diagnosed at the age of just 4 days old. We had almost the same kind of thing happen. When he was very young he would start to cough like he was almost chocking and would not stop, we decided to take him in because this is not normal at all. When we got to the hospital he was given a chest x-ray right a way and seen by a doctor. When the doctor listened to him he was very congested and had some kind of chest infection. His chest x-ray also showed the same thing, that he had a lot of mucus in his little air ways that he could not get out. The doctors ended up putting him on prednisone, a steroid to helps open the air ways and get that stuff out. We also went from doing 2 treatments a day to doing 4 a day. It ended up clearing up in about a week or so. The coughing stopped shortly after he was on the medicine. That is about the worst we have seen him. Like I said he is 1 now and doing very well. there is no stopping him. He loves to run and play and most of flirt with the laddies. I hope all is going well with your little one. If you ever have questions feel free to write. Take care and best wishes.

Nicole, my son was diagnosed at 5 months old. He is now 14 years old. Yes even though the albuterol makes them cough more to it does begin with it losens up the thick mucous from the lower part of the lungs and brings it to the top part of the lungs. Then with chest therapy it comes out and helps them breath easier.You can use chest therapy by doing percussions or a vest therapy. The vest therapy is the best.