Monday, May 30

CF Clinic Check- Up

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.

We were very happy with Madeline's stats at her appointment. She topped the scale at over 30 lbs and measured 91.5 centimers. She grew nearly 2 cms in 2 months. It was nice to hear that her weight has been keeping up with all her tall growth! Madeline is remaining in 80th percentile in weight as she grows. It's great to know that she can still grow tall yet pack on the pounds to be at the 83rd percentile for weight and 90th for height. We were so very happy to see her still maintaining her chub!!!

This is how we entertain M during clinic...

So, now we wait for results. We hope for the best. We hope that we don't have to continue this battle with Pseudo. But, we are very thankful for great sounding lungs, great weight gain, a great team of doctors at Hopkins, and a otherwise "healthy looking" little girl!

This is what happens after all the emotions subside after clinic.


  1. Sounds like a GREAT clinic appointment Sandy and wow M is growing fast!

    I'm keeping everything crossed that Cayston has killed off pseudo for you guys. Will wait anxiously for results.
    Great pictures and thanks for your comment, just what I needed to hear :) (you're showing as Sandy when I view the blog so I guess blogger is having a hissy fit again?)

    Take care and really really hoping for the best possible outcome!

  2. I'm praying for you all! I'm hoping it worked!! Sending lots of good thoughts and love your way!

  3. This is wonderful!! I'm praying for negative results!! And I love love love your hair, by the way!! :)

  4. Sandy, it's like we are the same person. Our clinic is the exact same way and I hated the Cayston 3x's a day but found it better then tobi. I'm so thankful we go to clinics where they offer drugs like this to kids because you are right, Pulm isn't approved either! I hope pseudo got the message and our kids are both pseudo free this culture!


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