29 August 2011

New Medicines

Just when I thought I finally had Bennett's medicines figured out, we add some more! At our CF Appointment last week, we were given three new prescriptions for medicines to further keep Bennett healthy.

Bennett has now added the medication Azithromycin to the list of daily meds.  Azithromycin is an antibiotic but is used in CFers as an anti-inflammatory.  The goal is for Bennett to be on a low dose of this medication for the rest of his life to keep down his lungs' natural response to inflame when fighting infection.  The way CF works (in a very very broad sense) is the lungs get an infection.  The infection finds a way to stay (due to the mucus, which is a breeding ground).  The lungs continue to fight this infection.  The fighting causes damage that cannot be repaired.  The lungs wear out too quickly because they spend so much time over-healing.  The hope is this medicine will, at least at some small level, keep the lungs from trying heal itself and thereby preventing long term damage to the lungs.

Bennett also came home with the medicines Xopenex (very similar to Albuterol but, we hope, without the hyper effect Albuterol has on kids) and Pulmozyme (or Donase).  Both of these medicines are given through the nebulizer and can be done during Bennett's Vest treatment.  Both meds help with lung hygiene.  Keeping Bennett's healthy lungs healthy is more than half the battle with Cystic Fibrosis these days.

The Azithromycin is new.  But the other two, Xopenex and Pulmozyme, were recommended to me for Bennett when we met with the CF Team at Children's a while ago.  The doctor recommended I consider using these medications but gave me the choice to do so.  We had just come back from the Feeding Clinic and I was well overwhelmed.  So, I suggested that we take a month or so to organize but reconsider these medications during our next appointment. 

This was a good decision.  By the time last week's appointment came around, we were finally ready.  Tonight was our first night to start the Xopenex (we are still waiting for the Pulmonzyme to arrive from our pharmacy).  I was nervous about having to force Bennett to wear the mask.  We force him to do so much already.  I dreaded having to fight him to keep the mask on.

But he didn't even seem bothered by it.  He did beautifully.  Even Oliver wanted a part of the action (I found an old mask and tubing for him; we must replace the nebulizer twice per year so this stuff would have been thrown away anyway).

I am so proud of Bennett tonight, holding his own nebulizer and being so compliant.  He may have liked how the Xopenex made him feel.  It's supposed to make him breathe easier.  Speaking of that, Oliver asked tonight why we needed to give Bennett a mask.  I reminded him again about how Bennett's lungs don't work right and how he give him medicine to help him.  Oliver knows about Cystic Fibrosis and how lungs help us breathe.  But he doesn't quite understand how it all comes together, just yet. 

Bennett is becoming hugely more independent, even as he is not yet 2.  He needs us less and less when it comes to entertaining him for his Vest.  He can push his own medicine through his g-tube.  And will soon be able to hook himself up to his feeding bag by himself!  We still have a long way to go before he can really do any real part of taking care of himself.  But Bennett loves to learn and be helpful so it won't be long...which is good, because I'm exhausted and ready for back up! :)


  1. It's great that he is so compliant with the extra treatments thus far. He looks very engaged at something too! He looks like a boy and less like a baby in these adorable photos. Hope he continues to work through the extra nebs with ease...:)

  2. Breck, I met you at CFIT in Dallas a few (already 6???) months ago. I met with someone at the CFF in Dallas today about volunteer work & they mentioned you in connection with the Great Strides in Waco I think (about how to volunteer with 2 little ones...). Great to see you - found you through the CF Mamas page on FB. I have pondered a blog for my sweet Eva, & her big brother Cal, who also loves to support his little sister by wearing a mask too. Isn't is amazing what big brothers can do? Thanks for the wonderful reading. & yes, our appointments AVERAGE 3 hours, but definitely 4-5 with Xrays & blood work. The crucial team eventually becomes the Dr, dietician, & RT if you need. I love the psychologist & love talking with her but rarely see the social worker. Haven't met the GI dr. Glad you have family here! Talk soon. Susan

  3. I love that you use the Breathe Easy Mask Holder!!!! We can't do treatments without it! I love that his hands are freed up to play video games :). We also just recently started Azithromycin, and totally credit it to the two negative cultures we've had for Pseudomonas :).

  4. B- we do Xoponex quite often (for asthma) and it doesn't (for us) lead to the super hyperactivity that Albuterol did. It still hypes her a bit, if we have to do say one every 3 hours for a few days but it isn't so bad. And I don't know if your insurance covers it or not but my Pediatrician gave me a card that you can show your pharmacist that knocks like 50 bucks off each round of Xoponex vials. Ours is normally over 110.00 but it knocks it down into the 60.00 range.

    Also things that helped make it easier for us- our machine is shaped like a Penguin. Our old machine was shaped like a bear but it was used so much it broke! Our masks are both dinosaur and puppy dog themed and sometimes we give stuffed animals fake treatments to make it seem less scary. Of course after doing it for a year and a half now she can sense when she needs them herself and let us know and she is mostly compliant.


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