Nabeel Ahmed's Comments

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At 6:09am on January 26, 2011, Nimi Langer said…

Dear friend and brother:

We found out that Hadas has DMD when he was 3 now he is 4.

We give him steriods (15mg) he is 20 kg and also vitamin D and calcium. We are thinking very much to give him blood preasure medicine as well.

Please visit action duchenne conference to hear more about it. Follow this link:

 

http://www.actionduchenne.org/r-nav/484.jsp

 

 

Let me know if you have any problems to hear and view the presentations

 

Yours,

Nimi

At 3:16am on January 18, 2011, Nimi Langer said…

Dear Mehboob, dear friend:

Thank you for your email and interest. As you know my son has DMD and I understand yours have BMD what mutation?.

Israel is not advanced in DMD and BMD research though I hope that with regulation change and the support of reasearh in Orphan disease we will start to make some progress.

I really hope that things will move along faster but they are moving thanks to organizations and parents.

 

I'll be in touch

Best regards to you and your family take care

At 6:25pm on November 24, 2010, djamel fathi said…
Sallam,I don't promess nothing but I did talk to somebody about his electric wheel chair,he told me he'll contact the company first,then if they agree to get him another one,because,he's in title to get a new one,then he'll give me his, wich is in a good condition.
Any way I'll keep you posted.I'll do my best.
Give my salutation to all your family.
At 9:18am on November 20, 2010, djamel fathi said…
Sallam,I'm sorry to be late to reply to your message.I hope everything is good with you,specially your son.For the moment I don't have any wheel chair,but if I find one I'll contact right away.My best for you,koulaam oua antoum bikhair.
Sallam.
At 4:05am on October 5, 2010, RAKTIM SINGH said…
Hi,
Please check if Prednisone is available( If DEFZLACORT is not there).Both are steroid only. Also,give some calcium/VIT D syrup. Both of these medicines give some strength to muscles and bones and delay the weakness. As such, these are the medicines which are given in USA/Europe also.
But please note that there are side effects also.So please check with your doctor.
Acoording to me, as your kid is 17 years, you should also give some heart medicine.

Take care.
Raktim
At 7:54am on October 4, 2010, RAKTIM SINGH said…
Hi,
We are giving Steroid( DEFZLACORT) + Shelcal(Calcium and Vit D Syrup) +Becasule( Multi-vitamin syrup) and Vitcofal(Iron syrup). Apart from that we do physiotherapy and good diet.

As such I had heard of certain doctors in Delhi,Bangalore and Mumbai who are giving stem cell treatment (Mesenchymal Stem cell) to DMD boys. I am still not totally
convinced about the results.
I normally see one Doctor in Chennai( Dr V Vishwanath). He has founded MDA India group ( www.mdaindia.org).
Apart from that I know 1 doctor in Mumbai and Delhi (Dr IC Verma in Sir Ganga Ram Hospital, DELHI)who are working for DMD.

I hope something good will come out in near future(one to one half years).

MAY GOD BLESS YOUR FAMILY.
At 10:05am on October 1, 2010, RAKTIM SINGH said…
Hi,
As such there are mainly 4 type of research is going on.
(1) Exon skipping. Here AVI BioPharma and Prosensa (along with Glaxo) is working.
(2) Myostin inhibitor. Here Acceleron is working with ACE-031. Thsi will help all boys.
(3) Utrophin upregulation. Here Biglacyan is working.
(4) PTC is working for point mutation with PTC-124.
Apart from that certain stem cell trials are planned in Italy.
Also, Dr Mendal in US is planning gene thereapy.

Raktim
At 10:02am on October 1, 2010, RAKTIM SINGH said…
Hi,
I will send the details on Monday.
Raktim
At 2:54pm on September 22, 2010, djamel fathi said…
Slaam,in the US the only FDA approved steroid is Prednisone.I get my son's steroid from England called Deflazacort,with less side effects than Pred.
At 8:23pm on September 16, 2010, djamel fathi said…
Aidcoum mobarak,Very nice pictures,I'll lie to you if I say there is a medication that can make our kids stronger,the only thing my son Mohamed Ali is taking are steroids and vit D and Calcium,and of course a healthy food.
I'm very glad that your son is enjoying his wheel-chair.Keep EL IMENE in our HEARTS,INCHAALAH.
At 7:39pm on December 9, 2009, Hadi Kelany said…
Salaam Olakom
prophet Mohammed says:" there are no disease with no curement "
insha Allah soon you will find great treatment world wild
At 6:18pm on October 1, 2009, djamel fathi said…
Oua alaicoum essalam,aidoukoum moubarak I'm very happy for him hope is doing good,here everybody is.
Salaam
At 7:24pm on April 6, 2009, Lina El Saddik said…
Hi Nabeel. Did you take any steriods for DMD and for how long? Mustafa is on Prednisalone without any side effects yet. but its long term that im worried about? How did you go about it?
At 5:39am on February 26, 2009, djamel fathi said…
Salamou alaicoum,I hope everybody doing good.did you receive yet the power chair?
At 11:09am on January 25, 2009, djamel fathi said…
Salamou alaicoum,I want to know if you did get the electric chair yet,I hope everybody doing good.
At 9:39am on January 5, 2009, Nabeel Ahmed said…
Thanks for your kind information, Nabeel is not taking any madicine, because in Pakistan no madicine are awailable for BMD and DMD patient.
what do you think when should be he will get heart problem, I mean at what age,
At 5:46am on January 3, 2009, Deb Robins said…
Hi, unfortunately my Doug is not very active now and really can just balance to sit and move his hands only. He is nearly 21. At 8 yrs of age he was too old to start steroids so they only kept him walking until he was 9yrs. He had a lot of supplements for a few years (CoQ10, Creatine, Inositol, Vit E, Vit C as staples), but I don't believe I gave them in large enough doses to be therapeutic so he has no suppliments since early teens. Around Nabeel's age, he started his heart meds, both beta blocker and ace inhibitor and this was a very big improvement in his heart into the normal range. Although very weak, my son is very straight without any back surgery and without any night-time ventilation - I attribute this to daily swimming and diving as a child and to an excellent physiotherapist who will be speaking in Bangalore. How about you, do you think anything in particular has helped your son? Is Bangalore conference a possibility for you?
At 11:49pm on January 2, 2009, Deb Robins said…
Hi Nabeel, please share information about this upcoming DMD conference with others in our region. http://tinyurl.com/bangaloreFeb09

best regards
Deb
At 10:54pm on January 2, 2009, djamel fathi said…
Salamoualaicoum,your brother in law just picked up the chair he's a good guy, I hope your son will be able to use it & help him for his movement,
KEEP PRAYING INCHAALAH NO BODY WILL NEED A CHAIR FOR THE PROACH FUTURE.
At 7:40am on January 2, 2009, djamel fathi said…
Idon't have much information about the result of phase one of the trail ptc124,but I read one time a grandmother of a child who participated at the trail that she seen some improvement,
You can't decide yet about the results till the end of all the trails I don't know how long gona take but it's very soon INCHAALAH.
SALAM.

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