My son is 3 1/2 and has exon deletions on 51-53.  I'm trying to make sense of how severe his DMD will get (I know no one can tell the future) and thought maybe anecdotally parents might be able to give some kind of insight?  He also has speech delays and developmental delays.  Perhaps boys with these additional delays tend to have a more severe case of DMD?

Thanks,

Kira

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Kira,

 

I am so sorry for your son's diagnosis.  HOWEVER, my son Nicolas was diagnosed at almost 5 years old.  He is now 9, and is still walking (not on toes either), and can still play and walk up stairs.  His deletions are 45-50, and he will be in Dr. Wong's exon skipping trial coming soon.  BUT wanted to let you know, he was also diagnosed earlier with developmental delays and speech delay.  I don't think it matters with severity, but if my kid was diagnosed early with developmental and speech, an is now 9 and still going, then hopefully that gives you some HOPE!!!!  He has been on deflazacort, which I attribute to his success in mobility, since he was 5.  I hope this helps!!!

 

Michelle Gonzales

Hi Kira,

Unfortuantely the mutation does not really predict severity. I know brothers with the same mutation, on the same meds, with the same doctors and therapies and are progressing at very different paces. I would agree that the way our boys  progress is similar, the actual speed of progression is very different. This is one of the other mysteries of DMD.

As far as speech delays, have you looked into Protandim?  My son did not have speech delays, but many parents swear that once on protandim, speech picked up immediately. My son does take Protandim and it is GREAT for him for range of motion and energy, he has gone off it before and lost ROM, but recovered it upon getting back on, thankfully.  Just a suggestion. 

Lori

Kira,

 

If you don't mind me asking...

 

Was your son a toe walker? if so, what technique did you use to stop that.

My son is almost 6 now, and we have been in night splints for over a year, we tried serial casting as well. And stretch him all the time... but he is still up on those toes.  They are telling me not to worry at this point, he is holding his own, but I am worried.  I really don't want to put him through heal cord surgery either though.  Any advice, of if anyone else ha any advice... please feel free.

 

Thanks,

 

Tammy

Michelle--Thank you so much!  It does help.  I am just trying to make sense of all this and hoping to be able to find some correlation in Connor's exons or developmental delays.  Does your son still have speech and developmental delays?

Lori--Thanks for the info.  We have Connor on Protandim and have noticed a difference (he is also on CoQ10 and Vit D).  We weren't sure if it happened to be he had a growth spurt or the supplement but are going to keep him on it anyway.  His calves have also softened which I read could happen as well.  He is due to start deflazacort in January when he turns 4.  I read some things about Green Tea on here too but haven't tried that.

Tammy--Connor isn't really toe walking yet although at times he does do that toward the end of the day.  We have him in night splits already which he does well in and we stretch him with TV so we can get a longer stretch.  I am a worrier so I can completely relate.  :)  I read some things about massage and acupuncture that I was going to research as well but I'm not sure if that would help with the toe walking.  I also read some things about long hot tubs too and also day splits but I'm not sure at what point you are supposed to start those.  I'm there there are lots of folks that could weigh in on that . . . .

I have heard that some boys walk on their toes as an adaptation to keep their balance and not because of tight heel cords. 

Susan

I have heard this too.  I believe it has to do with both, because he is tight as well. And when he does come down off of his toes he sometimes complains that it hurts and turns his feet out to compensate for it.  We may start trying a stretching splint at night this go around..  Does anyone have any experience with using one of these??

Susan Rathfelder said:

I have heard that some boys walk on their toes as an adaptation to keep their balance and not because of tight heel cords. 

Susan

Along this same thread about the severity/different progression of this disease:  My 6 ½ year old grandson seems to be somewhat athletic for someone who has DMD.  He has great coordination when it comes to kicking or hitting a ball, and quite a bit of strength behind his kicks and hits.  His parents declined to enroll him in any formal sports, but we all noticed his abilities when he is at play.  Of course, when compared to a child without DMD, he will look different because his jumping and running abilities are lacking.  

I’m just wondering if other boys show(ed) athletic strengths at this age.  Is this pretty typical at this age?  We have no one to compare him with except his 5 year old brother, also with DMD, who does not seem to possess these same abilities.   

Terry and Tammy-

   My son has is 4 and although like you said he lacks at running and jumping the same as other kids he is very athletic and does a very good job.  He can actually jump with both feet off the ground and runs a lot faster than what he did when he was first diagnosed.  I attribute this to his very strong personality because he will not give up but.. even though he started taking daily steriods his therapist is AWESOME! She has helped him so much and does so much better.  Also he wears AFOs at night that helps keep him stretched and has helped him go from being so tight he did some toe walking and could not go to neutral to being able to go past neutral.  But yes he does wonderful and runs great.  I don't know if this is what you are currently doing Tammy but it has helped Liam tremedously with his AFOs and physical therapy.

Megan,

 

We have just been in a casted night splint, and he does PT every week. Well, for the past month or so he has been in Hippo therapy actually, but will go right back in to PT as soon as that is done.  AFO's at night, huh?  We have discussed it during the day, but not at night.  I will have to say something to his PT and Dr. Wong about this.  We will actually be meeting with the PT in Cinci as well when we go this time around too, so I will mention this to that PT as well.  What kind of shoes does Liam where?  Just curious.. we have been trying to keep Braedan in High Top wide shoes, but they are hard to find. 



Megan Knight said:

Terry and Tammy-

   My son has is 4 and although like you said he lacks at running and jumping the same as other kids he is very athletic and does a very good job.  He can actually jump with both feet off the ground and runs a lot faster than what he did when he was first diagnosed.  I attribute this to his very strong personality because he will not give up but.. even though he started taking daily steriods his therapist is AWESOME! She has helped him so much and does so much better.  Also he wears AFOs at night that helps keep him stretched and has helped him go from being so tight he did some toe walking and could not go to neutral to being able to go past neutral.  But yes he does wonderful and runs great.  I don't know if this is what you are currently doing Tammy but it has helped Liam tremedously with his AFOs and physical therapy.

Terry,

 

My son Braedan is 5.  He is playing T-ball right now. Of course we notice things that he is lacking, but then he also surprises us too with things that he can do. I think that every boy is different.  We notice that he runs a little different, but most kids their age do tend to have a funny quirky run.  We are letting Braedan do pretty much activities that he wants to do, but we do try to limit them as not to wear him out. But he has to be able to be a kid too!  He usually wears us out and we are only in our mid 30's. 

Terry Porcaro said:

Along this same thread about the severity/different progression of this disease:  My 6 ½ year old grandson seems to be somewhat athletic for someone who has DMD.  He has great coordination when it comes to kicking or hitting a ball, and quite a bit of strength behind his kicks and hits.  His parents declined to enroll him in any formal sports, but we all noticed his abilities when he is at play.  Of course, when compared to a child without DMD, he will look different because his jumping and running abilities are lacking.  

I’m just wondering if other boys show(ed) athletic strengths at this age.  Is this pretty typical at this age?  We have no one to compare him with except his 5 year old brother, also with DMD, who does not seem to possess these same abilities.   

Terry-

           Liam started wearing AFOs during the day and I really hated them because they really limited him in everything he did.  He couldn't run, hardly climb, or get up.  We talked with his therapist and she said to put them on before he went to bed and then after he woke up.  So with how he sleeps he wears them 10-12 hrs a day.  They have helped him tremedously.  Liam wears all kinds of shoes right now because he is doing so much better.  He wears mainly flip flops right now during the summer as along as they have a strap in the back.  He also wears low top tennis shoes, low top boots, and his ever favorite rain boots.  He gets to help decide what he wants to wear as long as when he tries them out he doesn't have problems walking or tripping him up.

Connor (3 1/2) doesn't toe walk as I said but does night splints and hydrotherapy.  I read a lot about how hydrotherapy helps DMD kids because it's stretching PT (range of motion) and the resistance is supposed to be good for their muscles too.  Connor can jump but it's noticable that it's difficult and he doesn't do the Gower's maneuver yet.

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