PPMD Community

Moein
  • Male
  • London Ontario
  • Canada
Share on Facebook
Share

Moein's Friends

  • taylan çakır
  • cheng wei lin
  • Sanja Kogelnik
  • Rados Ágnes
  • Shelly
  • Rahul Deshpande
  • ruchika batra
  • Dilfuza Mendibaeva
  • Denise Bretsik
  • dietf
  • Kathi Kinnett
  • Tammy
  • Chris Diemler
  • Ruth Le Gal
  • Anna Mossiat

Moein's Discussions

CAP-1002 in Non-ambulatory boys

Started 18 hours ago 0 Replies

I wonder if long term treatment with CAP-1002 stem cells investigational treatment can ( if works and safe) can restore function to non-ambulatory so they can walk again?

Metformin vs L-Arginine

Started this discussion. Last reply by Rahul Deshpande Jan 27, 2016. 11 Replies

Improved Muscle Function in Duchenne Muscular Dystrophy through L-Arginine and Metformin: An Investigator-Initiated, Open-Label, Single-Center, Proof-Of-Concept-StudyPatricia Hafner, Ulrike Bonati,…Continue

HGH Supplements

Started this discussion. Last reply by Moein Jan 17, 2016. 2 Replies

Is there any supplement that can boost Human Growth Hormone in DMD boys who should be on daily steroids?Continue

Boosting HGH

Started Nov 4, 2015 0 Replies

Is there any supplement that can boost Human Growth Hormone in DMD boys who should be on daily steroids?Continue

 

Moein's Page

Latest Activity

Moein posted a discussion

CAP-1002 in Non-ambulatory boys

I wonder if long term treatment with CAP-1002 stem cells investigational treatment can ( if works and safe) can restore function to non-ambulatory so they can walk again?
18 hours ago
Moein replied to Galia Ben Ishay's discussion Tamoxifen
"It is already in the market for breast cncer"
Apr 26
Moein favorited Galia Ben Ishay's discussion Tamoxifen trial to start in November
Jul 27, 2016
Moein replied to Sanja Kogelnik's discussion A CRISPR Solution to Eliminating Muscular Dystrophy
"Thank you Shelly"
Feb 27, 2016
Moein replied to Sanja Kogelnik's discussion A CRISPR Solution to Eliminating Muscular Dystrophy
Feb 27, 2016
Moein replied to Sanja Kogelnik's discussion A CRISPR Solution to Eliminating Muscular Dystrophy
"My son has 8-41 deletion.does it matter the location and size of mutation?"
Feb 26, 2016
Moein replied to Sanja Kogelnik's discussion A CRISPR Solution to Eliminating Muscular Dystrophy
"Will this technology be applied to all mutations?does it have any limitations?"
Feb 26, 2016
Moein replied to Tammy's discussion Nightly Protein/Amino Acid Supplementation helps reduce muscle breakdown
"I think he is okay"
Feb 6, 2016
Rahul Deshpande replied to Moein's discussion Metformin vs L-Arginine
"Yanbin, Thanks for your suggestion, I am giving my son Deflazacort for the last 6 months. Was considering giving L-Arginine and Metformin in addition as the results look promising."
Jan 27, 2016
Yanbin Hua replied to Moein's discussion Metformin vs L-Arginine
"By the way, Some DMD cinial experiments show Inspra is effective to eliminate child's muscle oedema. My son took it  for 25mg per day, He's more than 5 years old and 18kg weight now."
Jan 27, 2016
Yanbin Hua replied to Moein's discussion Metformin vs L-Arginine
"Rahul, My son's doctor told me that prednisone is very important, it can extend child's ambulatory ability and prevents child's spine bend. other aux drugs just offer some auxliary effects,L-arginine too.But ,this kind of amino acid…"
Jan 27, 2016
Moein replied to Moein's discussion Metformin vs L-Arginine
"For four months.I gave him just 1000 mg of L-Arginine with 250 mg Glucophage. Brand Nowfood"
Jan 25, 2016
Rahul Deshpande replied to Moein's discussion Metformin vs L-Arginine
"Moen how many days did you give this combination? Did you see any side effects. Did you give the dose as         L-arginine (3 x 2.5 g/d) and metformin (2 x 250 mg/d). Which brand of L-arginine you used? My son is…"
Jan 25, 2016
Moein replied to Moein's discussion Metformin vs L-Arginine
"I had given my son this combination before he was enrolled in Myostatin trial for Pfizer because it is not allowed in the trial I think that there was an improvement and my son was having the courage to do tasks he was not doing it before,also he…"
Jan 25, 2016
Moein replied to Moein's discussion Metformin vs L-Arginine
Jan 25, 2016
David replied to Moein's discussion Metformin vs L-Arginine
"Yes very interesting. Moein can you provide info on where this trial was performed? My son already takes Metformin, but only to counteract weight gain side effects of steroids."
Jan 25, 2016

Profile Information

About me:
I have a son 10 year old with DMD.
Age(s) of child(ren)/individual(s) with Duchenne:
4-6
City:
St.Thomas

Moein's Blog

Anybody In HT-100 Trial?

Posted on September 21, 2013 at 10:17am 0 Comments

Hi,

I would like to know if anybody is enrolled in HT-100 (Halofuginone ) trial?

Comment Wall (19 comments)

You need to be a member of PPMD Community to add comments!

Join PPMD Community

At 12:06pm on May 17, 2014, Cheri Gunvalson said…

Hi,

Our son has had not side effects and his ejection fraction has been in the 50s and his cardiac MRI has been stable for several years. he will be 23 in October.

At 8:29am on May 8, 2012, Lori Ware said…

Sorry that took so long! I don't get on this site very often. I normally am in the DMD facebook groups. You can email me at loriware@gmail.com with any questions. I would be happy to answer.  Lori

At 9:55am on September 26, 2011, Ambrish Kapadia said…

Hi Moein

 

I am eagerly waiting for yr comments on losartan . Last week I just consulted my son's neurologist abt using Losartan for him who is 4 yr old and not on any steriods . She said it is ok as far as safety issues are concerned , but before prescribing ( as losartan here in India is available only against prescription ) she would like to know more abt it from those as young as my son  who are already using it , so just remembered u as your son is not very old , he is just around 6 yrs if am not wrong . Further she would even like to put it before the ethics committee of her hospital and start systematic clinical trial with losartan on young DMD kids . But to do all this she needs some more data . She is ready to think out of box and take up the challenges .

 

Would appreciate hearing from u at earliest in this regard

 

Rgds Ambrish - email id matex1884@gmail.com

 

At 12:55am on September 15, 2011, Ambrish Kapadia said…


Hi Moein

Just read yr below comment on Amrit's page . Just want to know more abt Losartan . My email id matex1884@gmail.com . My 4 yr old is DMD . Doctors here in Mumbai India think that he does not require steroids at the moment . So we are thinking of some other options to slow down the progress including idebenone . Has exchanged some posts with Joshua's Mom abt idebenone as well watched yr comments on it . If u can upbreast me abt losartan it will be really nice of u

Thanks Ambrish


At 2:53pm on April 6, 2011, MoeinMoein said…

Hi,my son is about 6 years.He is on the waiting list for this trial.we are from London ON where the ACE 031 is being conducted.I called my son's neurologist who is also running the trial here,and he told me that my son is supposed to enter the trial on June.I had the impression that they will go on with this trial.Moreover,It seems that this drug is working.Anyway,I am going now to get more news and if you like I can provide you with the updates.

My son uses:DFZ,ECGC,LOSARTAN (ON MY OWN),Vit D,fish oil,multivit,Coq10,Taurine(aminoacid),Calcium.

I highly recommend Losartan,and I bet that it might stop fibrosis+reduce the side effects of DFZ.

I do everything I can do then rely on God because doctors and medicine are just causes in any treatment,but God is the CAUSATIVE to this treatment because he is the omnipotent and merciful.

Keep the hope.Ii becomes closer

At 4:12pm on July 8, 2011, Leeandra Arhdeacon said…

http://community.parentprojectmd.org/profiles/blogs/ace031-study-terminated-what

 

Above is Pat's blog discussing the ACE-031 termination, i hope this answers your question.

 

Regards, Leeandra

At 2:25am on June 23, 2011, Galia Ben Ishay said…

Hi Moein,

I don't know if this drug is available in Israel. How old is your son? I give mine (wich is 3 and a half) green tea extracts, reishi, fish oil and nigella oil. A current study will shortly determine the efficacity of green tea, see the clinical trials site. Have you heard about the Pr. Tremblay's meganucleases technique? It gives much hope. All the best,

Keren (from Nethanya).

At 4:56pm on June 22, 2011, Dori said…

Hi Moein

You can get everything in Israel also deflaz but I believe we import it from Europe

Thanks Dori

At 1:43pm on April 7, 2011, Jason G said…

He had three nose bleeds over the three months on ACE31.   One was minor, two were pretty serious gushers. 

I think they have put a hold on the trial to see why they are getting nose bleeds and if anything else is going on that was not expected.

At 7:26pm on April 6, 2011, Amrit said…

We too were thinking of losartan but then got sacred as he aleardy taking 2 medication. It would be great we could update us on ACE trail. Thanks again.

At 2:35pm on April 6, 2011, Amrit said…
Hi Moein,
 My son is 7 yr old & takes:
Deflazacort :2 yrs
Growth hormone : 3 yrs( he was deficeint)
CQ10
protandim
Vit D
Bone up (bones)
What medication and supplement does your son take? Is your son in the ACE trial?
Thanks.
Amrit

 
 
 
 

© 2017   Created by PPMD.   Powered by

Badges  |  Report an Issue  |  Privacy Policy  |  Terms of Service