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Comment by dietf on April 2, 2015 at 10:28am

Hi all,
I have two sons aged 5 and 7. They were diagnosed DMD when elder one was 4. They both have duplication according to DNA sequence analysis. We are seeing a doctor for 3 years and using steroids for our elder son(5 mg per day). But this year our doctor told us that our son might be Becker type. My son has no problems in terms of mobility. Bu he can't run fast and we have small problems like jumping and climbing stairs. I am still confused about our problem, if it's DMD or BMD. They need to investigate further with muscle sample. We will give it a try later. I am also confused about using steroids. Do we really need to use them?

Comment by Kathy on July 8, 2014 at 12:26am

Curious to what IMD is. My son is considered an outlier deletion 3 to 7 out of frame  he wasn't diagnosed until he was 9, we started steroids a year later, and saw improvement, he is still walking, running and doing stairs at 14 1/2. His timed physical tests are normal, he can't sustain physical activity without getting tired for more then 30 minutes but still is pretty strong. I believe the steroids are helping.

Comment by Emilia on July 1, 2014 at 10:09am

Your son have deletion 3-30 in frame,like my son?

Comment by KarstensMom on July 1, 2014 at 10:02am

Karsten's doctor just changed his diagnosis from DMD to IMD based on his current symptoms, progression, and a physical test. Karsten is 7 with an in frame deletion of eons 3-30. He is not on a steroid protocol, just vitamins and supplements. His PT recently tested his milestones and he only one step behind his peers. My question is.... Have any of you with older boys who are still ambulatory tried or use a steroid treatment? If so, when did he start?

Comment by Janine on April 27, 2012 at 9:46am

The term outlier was used for my son  between 1 to 2 years ago when he saw Dr. Flanagin the second time. He was over 16 and still able to support himself (standing) for transfers. When your child is young and newly diagnosed you would give anything for the doc to tell you he has beckers or is an outlier. When he said it at 16 it was more like "yea that's nice" I think calling it dmd or bmd confuses things. In my mind it is all one disease from a mild becker to a severe duchenne, simply different degrees of the same disorder. I have learned that we will all deal with what ever happens when it happens the best way we know how. What you call it really doesn't change that. IMHO 

Comment by Lisa Jones on September 27, 2011 at 2:46pm

Dr. Rybalsky has Cincinnati Children's has used the term "intermediate" for Bradley. He is 14 (turns 15 in March) and is still walking with occassional use of the wheelchair. Right now, he is using his wheelchair for Marching Band/Parades but we even leave it at school. We feel very blessed by the slow progression. The other thing though is that Bradley was in the MRI muscle study and in his last progress note, it said his MRI results were not reflective of clinical observations. So his reports seem to show severe muscle damage despite how well he is doing. I keep thinking of it as a miracle.

Comment by Perlita & Gordy Hains on September 27, 2011 at 10:21am

Thanks Ann & Regina for clarifying... that makes perfect sense!  Ann - get on active.com and register - Shirlene will be sooo pleased!!!  can't wait to see you!

 

Staff Comment by Ann Martin on September 26, 2011 at 4:55pm

Hi Perlita, I hope you, Gordy & Levi are doing well.  It was nice to meet you in Baltimore.  I noticed your question about "outliers".  Not every doctor will use that term, but it basically means the patients who are much more severe or much less severe than average.  The term "intermediate" is also used sometimes to describe the boys who fall between Duchenne and Becker.  Like any disease, Duchenne and Becker have a spectrum of severity, and some patients will be more mildly affected than others.  What we can't predict is the future...how long he will continue to have a more mild presentation.  We of course hope that Levi will continue to do great!  I am looking forward to doing Levi's run in October...I need to register!  Best, Ann 

Comment by Regina on September 21, 2011 at 10:13pm

How was Levi diagnosed?  Jordan was diagnosed a little later, but he's almost 10 and starting to struggle a little more.  He didn't start steroids until just b/f he turned 7.  The doctors don't call him an outlier, but Dr. Finkel refers to him as an intermediate duchenne, but that seems to get more consistent as he gets older. At our last appointment, when Jordan was almost 9, he jumped on one foot and did a couple other things that caused Dr. Finkel to really lean on the intermediate.  Dr. Wong calls him Duchenne, mild phenotype. One doctor told us early on that they won't officially call them an "outlier" until they get older and they see how long they walk for.  I hope Levi continues to be fantastic!  I just thank God for every good day we have, and so far there's been more good than bad days for Jordan.

Comment by Perlita & Gordy Hains on September 21, 2011 at 9:32pm

need a brief expalnaiton on an "outlier" -  would my Dr have told us that already.  Our 5 yr old is a Stop codon, at exon 23... he is doing soooo well, no steroids yet.  During his recent timed tests he improved.  I realize this occurs just because of age and normal growth... but the "outlier" aspect has me curious????  can anyone explain??

 

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