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,
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
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
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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