Moein's Comments

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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

 
At 9:56am on January 31, 2011, Joshua's mom said…
Hi Moein,

I have been trying since the day you sent me the message to get back to you, but the computer wouldn't let my message send.

We, and everyone in Joshua's life, can see improvement since he started Idebenone. Even those who didn't know he started it noticed. Before he started the idebenone, he did the 6 minute walk test and took 222 steps. After 6 months of Idebenone, he walked 397 steps. The physiotherapist noticed his legs weren't as tight, so much that she called me from the school wondering what happened. He is due for another walk next week. After 1 year of 1 Idebenone per day, we bumped it up to 2. Since then, he can climb on the school bus without using both rails or the lift, he spends hours outside in his snowsuit, he still rides his bike, jumps on the trampoline, swings on the swing set, and at his last Dr. appointment, he didn't use the Gower's Movement to stand up from the sitting position. While there, he also jumped 2 feet onto the table in the office. He actually made the Dr.'s jaw drop.

I must say, Joshua is on Deflazacort, Idebenone, and a multitude of supplements as well. The big change came with the Idebenone though because that was the last one added to the daily regimen. If you do have any specific questions, please ask. I will add to the bottom a couple of information sites and where we order it from. I hope this helps.

Take care,
Naomi


P.S. We received two letters from Joshua's doctors and I posted quotes from them in my notes on Facebook. If you would like to see them, my Facebook name is Naomi Clark-Desender.

SITES:

http://www.hc-sc.gc.ca/dhp-mps/prodpharma/notices-avis/conditions/catena_fs_fd_117672-eng.php

http://www.santhera.com/downloads/Anja_GRC2009.pdf

ORDER FROM:

http://www.kirkmanlabs.com/SiteSearchResult.aspx?strSiteSearch=idebenone
At 2:33am on January 4, 2011, Dori said…

Moein

Of course you can ask me something, actually anything'

here or to my mail  psy.levy@gmail.com

bonjour

Dori

At 5:09am on January 3, 2011, Zdenek said…

zdravím Moein,

ospravedlňujem sa že som nereagoval na tvoj mail, ale som strašne pracovne zaneprázdnený. Akonáhle sa uvolní napíšem.  

poprípade ma skús kontaktovať cez skype: cestovatelzh

At 5:08pm on December 30, 2010, Joshua's mom said…
Hi again Moein,
I've been trying for over an hour to reply to your message, but I can't. You can e-mail me at desender@live.com and I will reply with the message I am trying to send!
At 3:13pm on December 30, 2010, Joshua's mom said…
Hi Moein,
Thanks for adding me to your friend's list. If you are on Facebook, there are many in your area if you would like to be in contact with them. You can look for me there at Naomi Clark-Desender.
TTYS,
Naomi
At 10:07pm on August 4, 2010, Marilyn Saxon said…
I don't know much about that medication. You should find a good pediatric neurologist who understands the disease. The MDA Clinic will have one or can give you information on this.
At 10:02pm on August 4, 2010, Marilyn Saxon said…
It has been so many years since my son has taken any medication to slow down the progression. Because your boy is young they may want to put him on steroid medication for short term. Good news for you is that a cure is on the horizon from many years of research. Your son will probably benefit from this. Subscribe to "Quest Magazine" muscular dystrophy association's monthly magazine.
At 11:11am on August 4, 2010, Zohair Ali Nanjiani said…
Mr.Ahmed,

Thanks for your query. For boys with confirmed DMD (genetic test or muscle biopsy), it is standard now to give the corticosteroid prednisone (0.75mg per kg body weight per day). This is certainly not a cure but a treatment to slow down the secondary inflammation and course of the disease till a more substantive cure is discovered that might occur sooner than later.

Please go to
http://patients.aan.com/disorders/index.cfm?event=view&disorder_id=1001
and read the AAN Patient Guidelines and Press releases in the right column of the page. All neurologists need to follow these and any in Ontario should be able to help you.

You're certainly welcome to ask any more questions or keep me posted. Do email me directly on znanjiani@gmail.com for convenience with attachments and such

Best

ZN
At 6:25am on August 4, 2010, Marilyn Saxon said…
My 26 year old son's heart has been affected by DMD. Be sure you or your loved one has echocardiogram every year. The doctors can detect the cardiac muscle begin to break down and medications can be introduced that can prevent congestive heart failure. Duchenne affects the cardiac muscle in the heart and the arteries. He takes cardiac meds and meds for congestive heart failure. When he was very young he took steroids but only for a short time. Mrs. Marilyn Saxon- Jason's mom.

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