I am new here and wanted to introduce my self. My son Liam will be 7 years old on Memorial day and was diagnosed with CF in the middle of December.
I started about a year and a half ago when he would get a reaccuring cough. Sometimes it would get so bad that he wouldn't stop coughing for an hour. I kept asking his doctor for answers and he continued to brush me off saying it was a cold. At the end of last august he had it again and they gave me a puffer for him thinking he might have the croup (his 3 year old sister just had it) A week later I took him back and he had a lung infection.
I am now getting upset and feeling that I am getting no answers so I start doing research on the computer. This is where I find CF. I continue reading because I know that I am a carrier (found out when pregnant with 22 mo. old) Suddely things are making sense. Liam's large, oily, and foul smelling BM. That fact that he was very small and thin for his age. His curved nails.
I brought this to his dr attention and he basically told me that I was wrong. I insisted on the sweat test in which he told me was a waste of medical resorces. We did several sweat test (the two that were able to be run came out borderline high but then I learned they don't do the test right) so they did a blood test. His doctor informed me in Nov. that Liam had a double mutation for CF but because he did not have frequent lung infection that he did no have it and he would just pass the mutation on to his children.
I didn't let it go. I found a CF clinic and told him my story. He was able to get the blood test results and took on look and told me that Liam had CF.
Liam is doing great. Gaining weight on enzymes. His lung function are great. His cough is better with the therepy. I keep hoping that since it took so long to diagnos him and he hasn't had any real bad complications that as long as I keep him taking his medicine that no mager complications will appear. I know it's a bit nieve, but it keeps me from breaking down.
Sorry so long.
I started about a year and a half ago when he would get a reaccuring cough. Sometimes it would get so bad that he wouldn't stop coughing for an hour. I kept asking his doctor for answers and he continued to brush me off saying it was a cold. At the end of last august he had it again and they gave me a puffer for him thinking he might have the croup (his 3 year old sister just had it) A week later I took him back and he had a lung infection.
I am now getting upset and feeling that I am getting no answers so I start doing research on the computer. This is where I find CF. I continue reading because I know that I am a carrier (found out when pregnant with 22 mo. old) Suddely things are making sense. Liam's large, oily, and foul smelling BM. That fact that he was very small and thin for his age. His curved nails.
I brought this to his dr attention and he basically told me that I was wrong. I insisted on the sweat test in which he told me was a waste of medical resorces. We did several sweat test (the two that were able to be run came out borderline high but then I learned they don't do the test right) so they did a blood test. His doctor informed me in Nov. that Liam had a double mutation for CF but because he did not have frequent lung infection that he did no have it and he would just pass the mutation on to his children.
I didn't let it go. I found a CF clinic and told him my story. He was able to get the blood test results and took on look and told me that Liam had CF.
Liam is doing great. Gaining weight on enzymes. His lung function are great. His cough is better with the therepy. I keep hoping that since it took so long to diagnos him and he hasn't had any real bad complications that as long as I keep him taking his medicine that no mager complications will appear. I know it's a bit nieve, but it keeps me from breaking down.
Sorry so long.