Simone & Elias
  • Female
  • Inzing
  • Austria
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Simone & Elias's Friends

  • Emilia
  • Brooke Lyons
  • Nadja
  • Sharon Hesterlee
  • KarstensMom

Simone & Elias's Discussions

Clenbuterol with DMD

Started this discussion. Last reply by Laurie Paschal Mar 31, 2014. 3 Replies

Has anyone here experience with Clenbuterol? We consider starting our little boy on this - a doctor here is convinced that it can delay the disease as good or even better as deflazacort/prednisone…Continue

 

Simone & Elias's Page

Latest Activity

Brooke Lyons replied to Simone & Elias's discussion Outliers? in the group Outliers - Intermediate between Duchenne & Becker MD
"3-30 should actually be BMD because it is in frame. We only got our confirmed DMD diagnosis once we had a biopsy and western blot test. We have chosen to not take steroids. Ryker has been in the CAT-1004 clinical trial for for 15 months and is doing…"
Dec 28, 2017
Simone & Elias replied to Simone & Elias's discussion Outliers? in the group Outliers - Intermediate between Duchenne & Becker MD
"I cannot understand why this other neurologist gives a becker diagnosis?! When you look at the official Leiden database and entering in-frame 3-30 this is definitely Duchenne. How old is Karsten now? And still developing?"
Dec 28, 2017
Simone & Elias replied to Simone & Elias's discussion Outliers? in the group Outliers - Intermediate between Duchenne & Becker MD
"Elias is on deflazacort for 1 1/2 years now. He has no problems with weight but is very active and doing sports nearly every day. I think weight problems will start when he will no longer be able to move in that way. He does not take Emflaza (takes…"
Dec 28, 2017

Profile Information

About me:
Mommy of 2 wonderful children. Laura, 4 years and Elias 1 1/2 years, married.
Age(s) of child(ren)/individual(s) with Duchenne:
0-3
City:
Inzing

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