It is hard to believe that it has been one month since I last posted! We have been B.U.S.Y.!
We were supposed to have clinic at the end of September but we were rescheduled. We will be going this week on the 6th. Again, I am excited and nervous at the same time. Excited because our last clinic went so well and nervous, well, just the whole nature of this disease. I still have many questions.
My most recent question is this: Can a boy (or in the rare cases of girls) be diagnosed with Duchenne, and have it progress more along the Becker's line? Becker's Muscular Dystrophy is less severe than Duchenne. From the research that I have done, it is on the same gene but to know for sure if it is one or the other, we would have to have a muscle biopsy. I don't know that I want to put Ben through this unless there was reason to. At our appointment in June, Dr. Flanigan seemed very pleased with Ben and how well he is doing. To quote him, "Ben is doing better than most 6 year olds with this disease". He also said to another doctor in the room something about Becker's. I know it may be wishful thinking, but I don't care. I am going to ask this week if there is a possibility.
Last week, I received a copy of the report that was sent to the pediatrician from our June clinic. It seemed positive overall. I wasn't sure what some of the numbers meant so I asked my DMD moms facebook page. They also said it was a positive report and that it appeared that he is doing good. Very exciting news to me :o)
He is doing so much more since he has been taking the Deflazacort! He has now been on it for 9 months. We do see mood swings, but they are not unbearable. He has not gained much weight. We are making sure that he takes his calcium and Vitamin D (among other supplements) every day. We want to keep him as healthy as we can!
Our family will be getting the flu shot for the very first time ever this year. I got mine this morning (because I was already at the doctor and it was offered) and Ben will get his this week too. The rest of the family will be in the next week or two. It was highly recommended to us that the whole family get this shot. The kids are not excited about it ;o)
That's it for now. I will likely update again after Wednesday's clinic.
Showing posts with label Deflazacort. Show all posts
Showing posts with label Deflazacort. Show all posts
Monday, October 4, 2010
Thursday, January 21, 2010
4 days
Ben will be taking his 4th dose of his Deflazacort today. So far, so good. We did see what appeared to be a rash on his face on the evening of his 2nd dose. But it went away within about 15 minutes or so and I have seen nothing like it since. I haven't noticed any changes really. (yet) I have been pumping him full of calcium, to try and strengthen his bones while taking the Deflazacort.
I watched a movie called Darius Goes West. When we first heard about the possibility of Ben having MD, I got on the library website and reserved everything that had to do with muscular dystrophy. I find that the more I know, medically speaking, the better I feel about things. I like having a complete understanding so I know what to ask the doctors. But the books that came in that were more biographical in nature, and this movie, I had to put those on hold for a little while. I am okay (for the most part) with the medical knowledge, but am having a hard time reading/seeing someone else's life who is dealing with this same thing. It just hits too close to home. I returned the movie (unwatched) and then kept hearing about it on all the MD websites that I have been getting on. I re-reserved it and actually watched it Monday.
This movie is a documentary about a young man, Darius Weems. He is 15 years old at the time of the filming. From the website:
Accompanied by his eleven best friends, Darius Weems, a fifteen-year-old living with Duchenne Muscular Dystrophy (DMD), leaves home for the first time in his life. The rowdy crew sets a course for California where they hope to convince MTV to customize Darius's wheelchair on the hit show, Pimp My Ride. Darius Goes West been enjoyed by hundreds of thousands of people of all ages all around the world.
Just a note-I do not watch MTV and didn't even know about this particular show. According to the movie, they surveyed people and asked them if they knew who Jerry Lewis was. Most people said NO. People my generation and younger don't know who he is, yet he is the "face" of Muscular Dystrophy, having done the telethon for many years. The goal of going to this MTV show was to tell a new generation about DMD. Before Ben was diagnosed, we knew nothing ourselves, so I do believe that people need to know about this disease. It affects 1 in 3,500 boys and is 100% fatal.
There was another family chronicaled throughout the film. A 5 year old boy (like Ben). I was shocked once again to see another little boy who walks, runs, kicks a ball, etc...just like Ben. Just another reminder that yes, he really does have DMD, it isn't just him being the Baby of the family, it isn't just him walking silly to make us laugh.
Again, taking this one day at a time, and enjoying our time as much as possible.
I watched a movie called Darius Goes West. When we first heard about the possibility of Ben having MD, I got on the library website and reserved everything that had to do with muscular dystrophy. I find that the more I know, medically speaking, the better I feel about things. I like having a complete understanding so I know what to ask the doctors. But the books that came in that were more biographical in nature, and this movie, I had to put those on hold for a little while. I am okay (for the most part) with the medical knowledge, but am having a hard time reading/seeing someone else's life who is dealing with this same thing. It just hits too close to home. I returned the movie (unwatched) and then kept hearing about it on all the MD websites that I have been getting on. I re-reserved it and actually watched it Monday.
This movie is a documentary about a young man, Darius Weems. He is 15 years old at the time of the filming. From the website:
Accompanied by his eleven best friends, Darius Weems, a fifteen-year-old living with Duchenne Muscular Dystrophy (DMD), leaves home for the first time in his life. The rowdy crew sets a course for California where they hope to convince MTV to customize Darius's wheelchair on the hit show, Pimp My Ride. Darius Goes West been enjoyed by hundreds of thousands of people of all ages all around the world.
Just a note-I do not watch MTV and didn't even know about this particular show. According to the movie, they surveyed people and asked them if they knew who Jerry Lewis was. Most people said NO. People my generation and younger don't know who he is, yet he is the "face" of Muscular Dystrophy, having done the telethon for many years. The goal of going to this MTV show was to tell a new generation about DMD. Before Ben was diagnosed, we knew nothing ourselves, so I do believe that people need to know about this disease. It affects 1 in 3,500 boys and is 100% fatal.
There was another family chronicaled throughout the film. A 5 year old boy (like Ben). I was shocked once again to see another little boy who walks, runs, kicks a ball, etc...just like Ben. Just another reminder that yes, he really does have DMD, it isn't just him being the Baby of the family, it isn't just him walking silly to make us laugh.
Again, taking this one day at a time, and enjoying our time as much as possible.
Monday, January 18, 2010
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:
The side effects, however, are not great.
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.
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
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.
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