Deflazacort

This is the new medicine that Ben's doctor wants him to start. It is similar to Prednisone (steroid) in the fact that they both help with muscle strength. BUT, you cannot buy Deflazacort in the United States because it is not FDA approved. These steroids are used to prolong mobility in children with Duchenne's Muscular Dystrophy.

Some of the benefits of Deflazacort (from the Parent Project MD website) are as follows:

• prolonged ambulation (mobility)
• improved pulmonary function (Ben does not have a problem with his lungs at this point)
• improved upper extremity function
• delayed need for spine surgery (scoliosis seems to be a problem with MD kids)
• preserved cardiac function (Ben has his echocardiogram in February to see how his heart is doing.)

The side effects, however, are not great.

• weight gain
• growth in height slowed
• cararacts
• osteoporosis (I started Ben on calcium supplements to help with this)
  
• gastrointestinal
• headaches & mood swings
• possible increase of blood pressure
• and a few others

I had a really hard time Friday when the medicine came in. It was almost like getting the diagnosis all over again. Now I have the medicine-it means it really is the real deal. I started wavering on even giving it to him because of the side effects, but after reading again about the benefits, I changed my mind. I bought some tic-tacs over the weekend to have him practice taking a pill whole. He actually gets a half a pill of the Deflazacort.

Today was his first dose! I took a tic tac and placed it in a small spoon of ice cream and had him swallow it. I wanted to make sure he couldn't taste the tic tac. He did that fine and so we did the real pill. From what I have read, it has a really bad taste. I don't want him to accidentally taste it and then not want to take it at all. So far, so good. I am eager to see if he truly improves in his muscle strength.