On Friday, we all made our hour and a half drive to John Hopkins for Madeline's Cf Clinic appointment. This would be appointment after we have completed 3 round of antibiotics to battle Pseudo. We were all hoping that this upcoming culture comes back negative for the nasty bug. We have been traveling every 6 weeks up to Hopkins to re- culture Madeline in order see if "this time" would be the one that killed that nasty beast.
|M waiting to been seen...|
Although, we won't have culture results back till late next week, we are hopeful that Cayston did the trick. We were able to talk to Madeline's Dr about how we felt about Cayston and how we thought was a better drug for her. We explained how well Madeline reacted to receiving the drug (ie- not screaming and crying when it came time for it unlike TOBI), how little she coughed or how it seemed to affect her mood or eating ability after having it administered, and how fast and easy it was to administer it compared to TOBI. The only downside we expressed to her doctor was that the Cayston required 3 treatments per day compared to TOBI only requiring two.
Madeline's doctor, Dr. P was very excited to hear our feedback about how Madeline reacted to the Cayston, especially since this drug is not often given to children younger than 6 years age that culture Pseudo. Hopkins embraces drugs like this and likes to "offer" it to their younger patients as an alternative to TOBI if they don't see negative culture results after a few times. We realized that the FDA has not tested Cayston on children younger than the age of 6, but we also understand there are so many medications that haven't been tested for children as young as she is that hs is currently using like Pulmozyme.
We appreciate our clinic's view and feel as though we are getting the best care at Hopkinss especially being that they are a large research hospital. They always seem to be leading new research in CF therapies and talks. Our choice to make Hopkins Madeline's cf clinic was one of the best decisions we have done.
|This is how we entertain M during clinic...|
|This is what happens after all the emotions subside after clinic.|