January 2011 Update

Bradley is doing very well with muscle strength for an almost 14 year-old with Duchenne Muscular Dystrophy. The doctors are still very pleased with his ability to walk. They were also happy to see that he had lost a significant amount of weight which has contributed to his being able to maintain muscle strength.

He was diagnosed 6 months ago with steroid induced diabetes. Because of this, Bradley was started on a medication for diabetes which also helps with weight loss. He has also worked very hard on his diet and he has given up sugar.

They did find some mild compression fractures in his spine at T-11 and L-5. And from the bone scan, he is on the verge of osteoporosis. The neurologist prescribed Fosamax to be given once weekly. Fosamax will prevent further bone loss.

Bradley is still not growing in height. He is in the 5th percentile for his age and height. In July we had testing which showed his human growth hormone to be sufficient but we were also told he may not grow much because of the steroids. Insurance companies usually don’t pay for Human Growth Hormone unless HGH is deficient or height drops well below 5th percentile. It is very expensive and it can also increase glucose levels. Since Bradley does not have a problem with his height at this time, we didn’t see the need to pursue that at this time.

We were hoping he would be eligible for this new 6 month study involving Insulin-like Growth Factor. This would have potentially improved his height and strength but he didn’t meet the bone age criteria of 11 years. His bone age test result showed his was at 12 years in July.

They are also concerned about Bradley’s heel cord contractures, mainly because his heel cord contractures are not the same on both sides. (The right is -30 while the left is -10). Bradley has always had trouble with his right heel cord being tighter than his left. In addition, he had a bad sprain in the right ankle a year ago and it is still tender at times. Because of the pain, we have not been as aggressive with his right heel cord stretch. But we are going to have to more aggressive.

They really want to serial casting again but we have been resistant to this because it involves several trips to Mt. Vernon 1.5 hours away. We had it done over an 11 day period in the summer of 2008 and it didn’t seem to improve his contractures that much. It was stressful taking time off from work and making the trip. We had to get 3 cast changes over that 11 days.

Now the serial casting is done over 4 weeks with cast changes weekly. That may be a little easier for us. What they suggested is that we take Bradley to a local Physical therapist every 2 months to evaluate the heel cords. At home, we will get more aggressive with stretches on the right heel cord. If there is no improvement, then we will go ahead and do the serial casting. They don’t want us to put off the serial casting more than a few month , if things don’t improve.

Another reason for the resistance is that he will have to use his wheel chair for a month at school which could decrease strength and require a lot of help from his classmates. They do believe Bradley is strong enough to get through the serial casting and they said not to worry about school, the school will have to accommodate him….and I know they will. When he sprained his ankle last year, they were very helpful and the other students were glad to help push Bradley in the wheel chair.

His echocardiogram was fine and they didn’t have to increase his heart meds this time. He has mild cardiomyopathy which was found in June 2008. In July, 2010 there were some minor changes on the Cardiac MRI that warranted an increase in one of the heart meds. But things are fine right now.

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Comment by Lisa Jones on January 17, 2011 at 10:05pm

Amit,

Bradley was on prednisone high weekend dosage from age 5.5 years to 11.25 years. He then started on daily deflazacort and has been on it for the past 2 1/2 years.

Comment by amit gupta on January 17, 2011 at 4:25pm
hi lisa, if you dont mind telling, was bradley on prednisone or some other steroid?
Comment by Lisa Jones on January 14, 2011 at 8:33am

It's awful that he is having so much pain and then the fear of moving the wrong way.

Comment by Michelle Scaglione on January 13, 2011 at 7:01pm

Yes he takes Advil.  But now we are dealing with  fear.  He is petrified that if he moves a certain way he will get pain.  He will be screaming and i will ask what hurts and he says nothing I am just scared. 

 

Michelle

Comment by Lisa Jones on January 12, 2011 at 11:34pm
Well his first dose was on Saturday so I am not sure. I think the only way we will know is to see what his next bone scan shows in 6 months. I hope it helps. I would keep checking on Johnny's back if things don't get better. Is he taking anything for pain. I give Bradley Ibuprofen when he complains of his back pain and it seems to help.
Comment by Michelle Scaglione on January 12, 2011 at 5:28pm

Thanks for responding Lisa

 

Johnny recently had xrays and nothing showed up.  He is complaining of low back pain when he first gets up and then it goes away.  I am not sure if he has sciatica or they missed something on the xrays.  Is the Fosamax helping?

Michelle

Comment by Lisa Jones on January 11, 2011 at 8:41pm

You are welcome, Farrah!

It is very important that we remain hopeful in this fight against DMD.

Comment by farrah buenaobra on January 11, 2011 at 6:06pm
i am happy to hear about your son and that he is still walking my son is 2 and was just diagnosed almost a month ago this gives me hope thank u for sharing your son with us ..
Comment by Lisa Jones on January 10, 2011 at 5:27pm

Nicole,

I am so glad that reading this note has been encouraging to you. There is a lot of hope! I can't tell you how thankful I am that Bradley is still walking. Every day that he continues to walk is a gift from God. I wish the best for your son as well.

Comment by Lisa Jones on January 10, 2011 at 5:25pm

Michelle,

The compression fractures showed up on thoracic/lumbar xray. They have been doing this same x-ray every 6 months and it never showed them before. Bradley had been complaining of back pain more recently. Around Christmas and New Year's Bradley started playing a lot of Ping Pong. He found a way to play it by himself. He was having to bend over and pick up the ball alot and he said one day it felt like something popped around the sacral area. We wonder if one of them may have occurred at that time. The doctor said L5 is just above the sacrum. He also has bone density scans. They were doing them once a year but the last 2 times it has been at 6 month intervals.  I believe the bone scans are very important. But it was the lumbar and thoracic x-rays that showed the compression fractures.

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