Luke's Meds

So several people have asked what we do for Luke when he is getting sick and also what his normal meds are.

I will list them here and then show a video and some pictures.

Acid Reflux Meds (he doesn't have huge issues with reflux but the reflux meds help the enzymes to work)
-Reglan 4x a day
-Prevacid 1 x a day

Inhaled Meds (these are administered with a nebulizer)
-Albuterol 2x a day (or Xoponex which is sorta the same as albuterol but doesn't have the side effects) this is actually used for a lot of asthmatics
-Pulmozyme 1x a day (dornase) From what the dr's tell me this is one of the drugs responsible for the better quality of life many cfers have.

Antibiotics he is usually on.
-Bactrim 2x a day (seems to work really well with him)
-Cipro 2x a day

He also gets airway clearance for 10-20 minutes 2x a day. He gets it right after his neb treatments. If he is sick then he gets his albuterol 4x a day and his pulmozyme 2x day. We increase his airway clearance to 4 15 minute sessions when he is getting sick. From the time I hear the first cough I start to up his treatments. I think that is working best.

He is always on enzymes. Right now he is on Creon 5 but as he gets older it can be Creon 10 or 20. He gets 4 before every bottle and every meal. We have to break open the capsules and then put them in applesauce so he can take them. He is the Creon King and can take them like a champ. Don't forget to have his food right on hand before you give them to him though. He knows that food comes after the enzymes and throw a royal fit if he doesn't get food right away.

Here is a video of him getting chest PT. I had just learned how so I don't think that I am doing it quite right. I do it harder now. And yes, he screams like that almost every time (if he isn't already asleep).


Here is a picture of the little guy getting his breathing treatment. Sorry it's so dark.



Lastly here is a picture of most of his meds. This is from when he was on iv meds so it doesn't show his oral anitbiotics. Also, he was on thickener at the time this was taken but he isn't on that now.