Our journey begins....
Matthew is currently five years old. His younger brother who is three has Cystic Fibrosis. For whatever reason, I decided that things were off with Matthew. He has always been the one you would guess had CF on appearance. As I started researching, I realized that his bowels have never been normal. I asked our cf doc if we could start enzymes. He said yes, we would do a trial and if that helped, we would do a DNA profile. He did have a negative sweat test in 2009.
Jump forward 12 days and the enzymes are working wonders. If he misses a dose, there is an immediate negative response. Enzymes were started on Oct 4, 2012 at 5000 units. We go in on Thursday the 18th for further DNA testing.
I got his pharmacy records for the last 18 months and he has been on a ridiculous amount of medications for respiratory llnesses. His last cough lasted two months and I was completely convinced he had pertussis. He is currently in the 19th percentile for height, which is strange because he toppped the charts as a baby and toddler. It's like he stopped growing!
Since being on enzymes for two weeks, he is more spunky, the dark circles under his eyes are gone, and his stools are normal. Amazing.
I believe this will be a long process to diagnosis and possibly CRMS. I have started this website to follow Matthew and maybe help other parents with this. We have no idea what we are getting into!
Jump forward 12 days and the enzymes are working wonders. If he misses a dose, there is an immediate negative response. Enzymes were started on Oct 4, 2012 at 5000 units. We go in on Thursday the 18th for further DNA testing.
I got his pharmacy records for the last 18 months and he has been on a ridiculous amount of medications for respiratory llnesses. His last cough lasted two months and I was completely convinced he had pertussis. He is currently in the 19th percentile for height, which is strange because he toppped the charts as a baby and toddler. It's like he stopped growing!
Since being on enzymes for two weeks, he is more spunky, the dark circles under his eyes are gone, and his stools are normal. Amazing.
I believe this will be a long process to diagnosis and possibly CRMS. I have started this website to follow Matthew and maybe help other parents with this. We have no idea what we are getting into!