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Hi to all,

Would you like to tell me if anyone had experience with quantum medicine in DMD?

Is it possible that those treatments can improve life quality?

thank you in advance,

Tanja

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This really surprises me as it is well known in DMD circles and from our personal experience that the DFZ causes less aggression, anger, frustration and sometimes weight gain.  Our son has ADHD and the PRED just made this much worse, whereas the DFZ has helped keep this to a minimum.  Why doesn't your Dr prescribe it just so you can get a comparison to see for yourself.  We know our kids better than anyone and if it is going to help, then why not, you have nothing to lose.
 
jiasusa5 said:

Thanks Keith,can you make sure with them that Dr.Iannaconne prescribed Deflazacort,because we asked her in last appointmant and she said she don't see any difference between prednisone and defalazacort.We have appointment on Nov 24th.Thanks again.

The person specifically said that doctor prescribed them deflazacort.

Good luck.


I don't remember I replied to your last comment or no.Dr.Iannaconne Has prescribed him Deflazacort and he on medicine for 10 months.Thank you so much. Going good so far,just his ankles getting tight and then I remembered you mention sport backer chair by nada chair.I am buying it but do I have to buy stretch belt with it or the extension belt(mention in accessories on website).Please let me know?
Keith Van Houten said:

The person specifically said that doctor prescribed them deflazacort.

Good luck.

Hi, so pleased the deflazacourt working well, we find it reduces the angry episodes for our son.  Re tightening of ankles, our son has day splints that he uses with special shoes.  They have helped a lot in keeping his ankles at the right position and cut down on how tippy toed he was.  We tried the night splints but they were too uncomfortable and our son could not sleep at night.  These work well and give him added support that he needs during the day at school.  You must have an Orthotist that you can go to to ask about this?  They are made especially for the boys and we get them from the States through our Orthotist.  Hope this helps.  Regards Debbie

What dose of deflazacort is prescribed by the Doctor? My son is 10 years and weighing 35 Kg, we are giving him 24mg, not sure if its the correct dose or needs to be increased.

 

Hi the dosage could be  using the Toronto Protocol which is .9mg/kg. Just found the interesting link you could check out that compares both Toronto and Naples Protocols, so depending on what Protocol they have your son on you can see from the below link. 

http://www.ncbi.nlm.nih.gov/pubmed/15336688

hope this helps. 

Thanks Debbbie that was indeed an interesting study. Looks like 0.9mg/kg is the ideal dose.

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