Hi Donna,
I sympathize with what you are going through right now. My 3 yr old granddaughter has cf. When she was 6 to 7 months old she had 3 upper respriatory infection back to back and head conjestion. The doctors in our area ( a very small town) prescibed histex for her to dry up her infections. Also telling us to use saline to squirt up her nose to help retrieve any mucous with a bulb syringe. We tried this and was unsuccessful. There was just nothing coming out
She also had stridor (noisy breathing) which started when she was around 1 month old. That got to the point to where she made such terrible noises when breathing that my daughter and I took her to an ENT suggested by the family physician. He ran no test to see what was causing the noisy breathing and just contributed it to maybe her nasal passages were too small and she would probably outgrow it.
By the time she contracted her 3rd upper respiratory infection in a row at 7 months old, I decided to buy a bigger bulb syringe and try to extract some secretions from her nasal passages. As soon as I left the drug store she took a coughing spell in the vehicle and could not stop, she also starting crying and between the two she started having trouble breathing. Seeing that she was not being able to breathe
very well I rushed straight to the ER which was only about 2 minutes where I was, thank goodness.
The ER nurse also tried squirting saline up her nose to extract secretions,as soon as she did that my
granddaughter stopped breathing. She called for code to the ER and I was just hysterical,because I
saw her stop breathing right before my eyes,she was already turning blue. They worked on her for a short period and the ER doctor came out and told me she was a very sick child and had to be intubated and were going to lifeflight her to Vanderbilt Children's Hospital in Nashville.
After a few days in the pediatric intensive care they decided she needed to stay intubated,and a pediatric surgeon (ENT) was going to perform a tracheostomy on her because they tried to extubate her at one point and she was having trouble breathing on her own. With further testing for that reason they discovered she had a condition called trachelmalacia, which is a collapsing wind pipe and that was why she had the noisy breathing.
After the tracheostomy and still being in Picu she was not improving at all. We started doing research on our own and a friend of mine said she found some imformation about cf,which my granddaughter had all the symptoms of.We mentioned this to the attending nurse in the picu and she said it couldn't be cf because with cf you have tremdous amounts of secretions which she wasn't having. After exausting all other efforts and test to determine why she was not improving they finally decided to test her for cf.They tried the sweat test there at the hospital, twice, but each time she did not produce enough sweat to get a sufficient result. They finally decided to draw blood and send it to a research place in Hackensack,New Jersey where they do more intensive testing there. After waiting about 3 weeks we got the news that she did in fact have cf. 'She spent a total of 4 and half months in the hospital. Once they found out that she had cf they knew what to do and she started improving.
The reason she was having so many upper respiratory infections was because she had cf and we did not know, and he histex they were prescribing for her were drying up her secretions or should I say making them thicker and that is why we couldn't retrieve any from her nasal passages and she couldn't cough any up. Because with cf you dont have a tremendous amount of secretions, it makes your secretions really thick and it sticks to the walls of your lungs and without the proper medications for cf to loosen the secretions there is no way they can cough them up on their own.
If only they had listened to us when we told them we thought it could be cf she could have gotten better much sooner than she did. We came very close to losing her.
So I hope this will help you in some way even if the only way is knowing that there are many people out there with this disease, and that upper respiratory infections frequently can be one symptom ,not being able to cough up secretions because they are so thick, and many doctors misdiagnose this disease as being asthma. If in doubt dont give up, they have a really great cf clinic at Vanderbilt Children's Hospital where she was sent to.If you ever have any more questions or just want to talk by email, just drop me a line and I will try to help even if it is only listening if you need to talk.I know sometimes I need that myself.My email is leeann9963@yahoo.com Feel free to email me anytime you like
