hi, my son neel is 6 and has dmd... he had his first leg cramps at school today... it was so bad he couldn't walk and they had to use a wheelchair to get him to the nurses office... the cramping was so intense that you could see the muscle spasms... we tried massaging and stretching but nothing helped and it lasted about two hours then he could finally walk again... my question is how do you deal with the muscle cramps and how much, if any, damage do the cramps cause...See More
I am in Bangalore,India. I had also met many groups/doctors here for Ayurvedic medicines. No proven results.
But I across one interesting fact.
Many of the Ayurvedic supplements contains Brahmi (Bacopa Extract), Ashwagandaha(Withania…"
I have been to Baba Ramdev's ashram for this purpose. There is no cure available either in Ayurveda/Homeopath. At least in Patanjali Yogpeeth (Baba Ramedev's Ashram) they were honest and they told me clearly that there is no cure…"
"I am wondering about this Ayurveda concept and in conjunction with Yoga, this must be helpful to our boys. Although I know it would never be a cure, I do think it would help slow the progression and allow them to walk longer. …"
Thanks for writing, Kulwant. Aditya is 8 1/2 and goes to a nearby public school. We walk to school everyday and he is independent while at school. He was diagnosed at 18 months and was prescribed Prednisone upon diagnosis. We took a decision not to give it to him, knowing well the side effects. He is walking ok at the moment but not very happy with the fact that he cannot run around and play like other boys his age. He is tall but not very heavy for his height and I think that has been helping his mobility too. In spirit he seems strong and accepting (so far). His attitude has helped us and him to cope with the condition.
saw your posts on PPMD. i can really relate to what you are going through. my son is almost 7 and was diagnosed with DMD 3 years ago. i was in denial for a very long time and it still hasn't sunk in fully. i stopped reading about DMD, avoiding and cutting short every conversation about my son. i have seen some people not calling me any more and some just calling me out of pity. it was just too much to take. i totally understand how you must be feeling tackling those annoying questions. you can talk to me anytime you like. and yes, some days are good and some are bad and some even worse. but i am a firm believer in God. HE won't let this ugly disease take over our happiness.
i look forward to your reply.
Yes Arun is doing ok.He stopped walking this April-he was 81/2.He has a power chair now and he loves it,he adjusted much better than we did.He recently started deflazacort and goes for aquatherapy 1x week.I also have a 12yr old daughter,Simran and a 6yr old son Aman(no dmd).
Hello Kulwant.I saw your pics of your little boy Neel,he's adorable!My name is Baljit and my son Arun is 9 yrs old .He was diagnosed six years ago.It's been quite a journey so far with good days and bad days ,but finding this site has been a great thing in that you do not feel so alone with this disease.
Hi, Kulwant. How are you doing? I love your new pictures of Neel -- so cute! I read with interest your post about starting steroids at 3. Is this what Dr. Wong is recommeding for all young patients? Is Neel in the "plateau" stage? I can't help but think that Max's 2nd birthday is coming up this spring, and he'll be three in no time at all. Of course I want to do what's best for him, but the more I read about steroids the more worried I become!! I'd love to hear your thoughts!
Sam adjusted to the steroids very well. He's been on 15mg deflazacort since the beginning. He has had side effects. His growth has been stunted a bit. His face is a little round, but not as much as some I've seen. He also has more body hair. But his behavior has never been affected. The biggest side effect we've had is osteoperosis. This was after being on steroids for 3 years. Sam is now on Fosamax and it has helped tremendously. At the time Sam started steroids, he was the youngest Dr. Wong has started. I don't regret it at all. Within months of starting he could run, jump and climb stairs. He had never done any of those things before. We also started him on CoQ10 a few months after the steroids. I also think this one makes a great bit of difference.
My son Ryan got diagnosed in October 2008. It is hard trying to cope with it. He will turn 7 this Year. Your kids are beautiful. I am from Delhi and live in Los Angeles. Wanted to know if you are coming for the conference in Atlanta this summer, so we could meet.