My son is almost 14.5 and is still walking unassisted and even climbing stairs.  I never thought when he was diagnosed at 5 that he would still be walking at 14.  I guess I am feeling anxious about it.  When did your child stop walking?  How "normal" is this to still be so mobile at 14?  How will I know when he is going to stop walking and need a wheelchair?  

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That is great, he is doing very well. Make the most of these walking years, I regret not doing more with my son while he was still ambulatory. There is still so much your son can do. My son was using his wheelchair full time by age 12. I think he was 10 when we got his first chair although I really resisted this as he was walking quite well but the doctor said to use it only when he gets tired or there is a lot of walking required. The benefit of this is that the chair is seen as a positive, not something he needs but can choose to use if he wants to. I would always have the chair nearby and ask him if he is riding or walking, the choice was always his. This slow transition to full time use of the chair was less of a shock to us both. My son is 14 now and has an electric wheelchair and he loves it for the new found freedom it gives him. He can be much more independent and even chase the other kids around and gives little ones rides which makes him popular with the kids. 

Hi Karen,

My son is 9 years old and still walking. I was curious to know what supplements you are giving your son. Are you giving steroids, which and when did you start? How active he is, physical therapy how many times a week, any other. May God bless you and your son.

Each child is different I believe due to their mutations.  Years ago I was told by my sons dr that each one progresses differently.  I have a friend whose son has a duplication mutation and he walked until about 15 I believe.  My son has a stop codon in the beginning of the gene and he stopped at 12 and half.  He fell at 11 and half and it went down hill from there.  If I was you I wouldn't be looking at when he will stop I would be enjoying the fact he is doing well.  Maybe he is more of a Becker diagnose.



Rahul Deshpande said:

Hi Karen,

My son is 9 years old and still walking. I was curious to know what supplements you are giving your son. Are you giving steroids, which and when did you start? How active he is, physical therapy how many times a week, any other. May God bless you and your son.

Hi Rahul,

My son has been on prednisone and now deflazacort since he was 5.  He is not taking any supplements besides vit d and calcium to help with the effects of the steroids on bones.  No physical therapy.  He gets stretching done to help avoid contractures and enjoys riding an elliptical bike in gym (with no resistance.).  He recently started walking about 1/2 mile each day with his brother this summer.



Michelle Scaglione said:

Each child is different I believe due to their mutations.  Years ago I was told by my sons dr that each one progresses differently.  I have a friend whose son has a duplication mutation and he walked until about 15 I believe.  My son has a stop codon in the beginning of the gene and he stopped at 12 and half.  He fell at 11 and half and it went down hill from there.  If I was you I wouldn't be looking at when he will stop I would be enjoying the fact he is doing well.  Maybe he is more of a Becker diagnose.

Hi Michelle, no he definitely has duchennes, a deletion of exon 51. I am very much enjoying the fact that he is still walking and feel blessed by it but hard to not think about the loss of ambulation that I know is coming the older he gets..  Come on FDA!! 

My son is 10 and he stopped completely walking at 9. He's been confined to a wheelchair since last November and is already having all other problems to. Count ur lucky stars ur son is still mobile.

Well Karen don't tell the FDA about how well your son is doing because they wont see it as traumatic as it is to the rest of us.  My son never road a bike the way your son is doing or walking a 1/2 mile.  This just doesn't sound consistent with a DMD diagnose.

Hi Karen,

My son Alex walked until he was 16, at which time he fell and broke his leg and never walked again.

Regards,

Mandy

Hi Mandy, Thanks for the reply.  That is very encouraging for me to hear. 

Mandy said:

Hi Karen,

My son Alex walked until he was 16, at which time he fell and broke his leg and never walked again.

Regards,

Mandy

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