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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Hi Tammy, my son was also a toe walker, at age 4 he had heel cord surgery, he is now 8 yrs old. The heel cord surgery corrected the problem. I was also leary of him having this surgery, but I'm glad we went through with it.

Tammy Henegar said:

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

Kira,

My son Alex has a deletion of exon 45 and was diagnosed at 2.5.  He had delayed speech and did not speak at all until age 3. We enrolled him in the "Place" educational program here in Florida from age 3 until he entered kindergarten at age 5. He learned how to talk and now at age 14 (almost 15) we can't get him to stop talking !  He has been wearing night splints since diagnosis and taking Delflazacort since age 8. Lots of P/T and swimming is helpful. Alex is still walking and only uses a manual wheelchair at school, he just started High School !

Progression of DMD is never the same in any 2 boys. I just attended the conference and was amazed at the different stages the boys are no matter what the similarities are in age or treatments.

I saw it as a blessing that my son was diagnosed at such an early age as it gave me the opportunity to start a treatment plan that I now believe is the reason he is still walking.  In my opinion there is no such thing as a "more severe" case of DMD.

I hope this is helpful and encouraging.

Mandy

 

Hi Mandy,

Thank you--that really helps.  I wanted to go to the conference but was not able to this year.  I certainly hope to next year.  As I'm sure all parents want to know, when is Connor going to need a wheelchair?  Is it in 3 years or 10 years?  I know no one can tell the future but I'm just searching for something to give me some kind of indictation so we can plan.  I don't want to wait until the last second for getting a van or moving, etc.  I thought I had read something about a muscle biopsy being the only way to tell how much (or if at all) dystrophin your son makes.  I was kind of hoping that might give an indication too.  Meaning if he makes none, he'd be on the more severe end vs. makes a little where he would be on the lesser.  Thoughts?

Thanks so much for the reply!

Kira



Kira Mullaly said:
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.

Kira,

 

When you say Hydrotherapy... do you actually go somewhere with a PT for thi?  Braedan does swim a lot, but not with his PT.  Maybe we should look in to this...

 

Hydrotheraphy is PT in a warm pool.  I think a PT person has to have additional training for it.  We have Connor's speech and Hydrotherapy at Northeast Rehab so maybe try a rehab hospital or call your insurance company to find a Hydrotherapist?  If you need a referral just google hydrotherpy and Duchenne and you should find lots of info to bring to your Pedi.  It's been great for Connor.  The warmth and the resistance of the water really help.  He has balance issues as well so him balancing on a board for example is good for his core strengh too. Plus they do his stretches in there too so they can get some really good long ones.

Kira

Omg you must do this my son is now 4 1/2 and started this therapy when he was 3 and not walking and I swear this therapy is responsible for him walking.  It's called aquatic therapy for our insurance purposes and he does it with his PT.  It's a warm water pool that is slightly salted (not sure why the salt) and it's so not swimming at his age it's play based throwing a water toy away from him so he has to walk and get it stretches his upper body and arms by reaching for it and the best is she can sneak in stretching his heel chords and he doesn't resist like he does always he hates that.  How we got it covered by insurance was he was doing PT in the gym 2 times a week and the PT dropped 1 and bills the water in it's place. So she bills it as 1 "land" treatment and 1 "aquatic" treatment per week instead of 2 land.  It got approved right away we have Blue Cross but if your PT is good she can make it happen.  She's terrific and I know shed be more than happy to talk to you or give you guidance James has been with her since he was 17 months and she is particularly fond of him and would really be a great resource for you if you run into trouble she is the head PT and has jockeyed and manipulated the insurance side to always get what James has needed he used to have 3 land a week more than allocated but she got it covered anyway please please use me and or her as a resource if you need to. There aren't words enough to communicate what this therapy has done for James.  Balance, walking backwards, so much more he learns where he feels safe with the resistance of the water it's like he's king kong in that pool. Jumps hops runs and so much more that he can't do otherwise. Oh I'm totally rambling I so hope you can make it work. My regular email is candiceanderich@comcast.net better to get me there than on this site. We are in San Fran btw 


Tammy Henegar said:

Kira,

 

When you say Hydrotherapy... do you actually go somewhere with a PT for thi?  Braedan does swim a lot, but not with his PT.  Maybe we should look in to this...

 

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