A representative of Kennedy Krieger Institute has recently informed me of a new clinical trial for boys with Duchenne Muscular Dystrophy. They are checking to see if the drug Revatio (same drug that is in Viagra) would be beneficial as a cardiac drug for DMD patients. They are still recruiting for this trial. They plan to have 30 boys, ages 15 or older, who have been diagnosed with DMD. For more information, or to see if your son qualifies, click here.
I have recently read about the potential benefit of this drug in boys with DMD in a Quest article. I am so thankful for so many researchers trying to help these boys!
About the Kennedy Krieger Institute
Internationally recognized for improving the lives of children and adolescents with disorders and injuries of the brain and spinal cord, the Kennedy Krieger Institute in Baltimore, MD serves more than 16,000 individuals each year through inpatient and outpatient clinics, home and community services and school‐based programs. Kennedy Krieger provides a wide range of services for children with developmental concerns mild to severe, and is home to a team of investigators who are contributing to the understanding of how disorders develop while pioneering new interventions and earlier diagnosis. For more information on Kennedy Krieger Institute, visit www.kennedykrieger.org.
Wednesday, November 10, 2010
Sunday, November 7, 2010
Friday, November 5, 2010
Reflecting and Other Stuff
I don't know why, but I have been reflecting on Duchenne more lately. Maybe it is because we are coming up on the first anniversary of our diagnosis. Perhaps it is just a time of year where life slows down a little and there is more time to think. Thinking about it too much is rather depressing. Pondering the future and what it may hold for our son and our family is a frightening thing for me.
I have also been reading about other DMD boys and young men on my facebook page. It is just so sad for these boys to have to go through this. Sometimes, if I read too much, it puts me in a melancholy kind of mood.
Benjamin has not started the increased steroids yet. I wonder if this may be why he is walking a little different. Things have settled down into more of a routine this week, so I don't believe that it is due to fatigue. Not that I think about it, he has been sleeping in quite a bit. He stays up late (midnight) and gets up about 9:30am.
I forgot to mention that in mid-October, he showed me a large, black bump on his gums, right above one of his baby teeth. I thought it looked like an asbcess and called the dentist. They got us in later that afternoon. Sure enough, it was an abscess. On the drive to the dentist, it had popped (ewww!). They took an x-ray and thought they saw something odd, so they took another. Sure enough, the strange thing they were seeing on the x-ray was part missing root to his baby tooth. They called it "internal resorption". Apparently, the root reabsorbed into his gum and caused the infection. The scary thing is: Ben said it didn't hurt!! It looked horrible!
The dentist decided to pull the tooth, but then was unable to get the remaining part of the root. She tried and tried and then Ben lost it. He was crying so loud. Even though he was numb, he could still feel the pressure of them digging in the gum for it. She finally stopped and said that now that the tooth was out, the infection could drain naturally and the root would eventually work its way down. We go back to check on it next week.
I wonder if the steroids (which cause bone loss) may have caused it. They said no, but I am not sure. He now has another baby tooth that is loose and has the grown-up tooth growing in behind it. I am going to wait until our appointment and have them pull it while we are there.
I am so thankful that I know the Lord Jesus Christ. I truly find my comfort in Him. I know that He holds our future in His hands and I am so grateful for His grace.
I have also been reading about other DMD boys and young men on my facebook page. It is just so sad for these boys to have to go through this. Sometimes, if I read too much, it puts me in a melancholy kind of mood.
Benjamin has not started the increased steroids yet. I wonder if this may be why he is walking a little different. Things have settled down into more of a routine this week, so I don't believe that it is due to fatigue. Not that I think about it, he has been sleeping in quite a bit. He stays up late (midnight) and gets up about 9:30am.
I forgot to mention that in mid-October, he showed me a large, black bump on his gums, right above one of his baby teeth. I thought it looked like an asbcess and called the dentist. They got us in later that afternoon. Sure enough, it was an abscess. On the drive to the dentist, it had popped (ewww!). They took an x-ray and thought they saw something odd, so they took another. Sure enough, the strange thing they were seeing on the x-ray was part missing root to his baby tooth. They called it "internal resorption". Apparently, the root reabsorbed into his gum and caused the infection. The scary thing is: Ben said it didn't hurt!! It looked horrible!
The dentist decided to pull the tooth, but then was unable to get the remaining part of the root. She tried and tried and then Ben lost it. He was crying so loud. Even though he was numb, he could still feel the pressure of them digging in the gum for it. She finally stopped and said that now that the tooth was out, the infection could drain naturally and the root would eventually work its way down. We go back to check on it next week.
I wonder if the steroids (which cause bone loss) may have caused it. They said no, but I am not sure. He now has another baby tooth that is loose and has the grown-up tooth growing in behind it. I am going to wait until our appointment and have them pull it while we are there.
I am so thankful that I know the Lord Jesus Christ. I truly find my comfort in Him. I know that He holds our future in His hands and I am so grateful for His grace.
Monday, November 1, 2010
November already?!
I cannot believe it has been almost a whole year since we have found out about Ben having DMD! Actually, November 28th to be exact. In some ways it still seems so new and that we still have so much to learn. I have gone in spurts in my research over this last year. Right now, I am in the middle of taking a "research break". We've been too busy with other things recently.
This last week, our church had revival. Being the pastor's family, this was a time consuming week! But, oh so wonderful!! We had a great time! I did notice that Ben fell more this week and I wonder if it is because he was tired. We stayed up late, and were busy almost all day, every day. He fell a few times each day :o(
At our last clinic appointment, Dr. Flanigan said that he wanted to increase his steroids from 15 mg per day to 18 mg. He also said to use up what we have and then start it. We still have about 3 weeks' worth left. This increase should alleviate him falling so much again.
Other than the falling this last week, he is pretty much the same. I did notice that he scooted down the stairs a few times instead of walking down them. He has not been real consistent in wearing his night splints. They just don't seem to fit right. Dr. Flanigan said if it continues to be a problem, he will need to be fitted with a different kind, and the new ones would not be adjustable.
That's it for now.
This last week, our church had revival. Being the pastor's family, this was a time consuming week! But, oh so wonderful!! We had a great time! I did notice that Ben fell more this week and I wonder if it is because he was tired. We stayed up late, and were busy almost all day, every day. He fell a few times each day :o(
At our last clinic appointment, Dr. Flanigan said that he wanted to increase his steroids from 15 mg per day to 18 mg. He also said to use up what we have and then start it. We still have about 3 weeks' worth left. This increase should alleviate him falling so much again.
Other than the falling this last week, he is pretty much the same. I did notice that he scooted down the stairs a few times instead of walking down them. He has not been real consistent in wearing his night splints. They just don't seem to fit right. Dr. Flanigan said if it continues to be a problem, he will need to be fitted with a different kind, and the new ones would not be adjustable.
That's it for now.
Subscribe to:
Posts (Atom)