Hello,

My 12 year old son has been diagnosed with RND reflex neurovascular dystrophy in his stomach. He is currently on the waiting list at Children's Hospital in Philadelphia for an intensive physical therapy program headed by Dr. David Sherry. He gave us this video to watch - it is wonderful - you actually get to witness a girl who couldn't walk or put weight on her foot recover - it is truly amazing and uplifting. I feel so fortunate to have my son seeing this man - it has given us some hope - finally - I thought it might be helpful to others!

Here is the site for the video:
http://www.childhoodrnd.org/

Terry

Hi Terry,

What wonderful news. I have read a lot about his program and his success rate--- 90% I believe
I have read the odd comment from people who do not like his methods as he encourages quite a lot of physical therapy but the proof is in the pudding and his happy patients are testament to the fact that what he does works!
Wishing you heaps of luck
Love Tayla

Thanks Tayla - I know his program is difficult, but at this point we'll try anything to give my son his life back.

Have a pain free day.

Terry

Hey,
Thanks for emailing me and my mom this link. It sounds similar to the one I am hoping to do in the UK.
Thanks for all your help Terry
Alison

Hi Ali,
I hope you get in the program - I'd like to see your running again!!

terry

Hi

Havnt posted here before but I just wanted to say that Great Ormond Street Hospital for children in the UK do a very intensive 2 week physiotherapy programme for RSD (amongst other rheumatological conditions), which sounds similiar to the one you describe.

I have been on GOSH's programme and it has helped me no end. It has a very high rate of success and I personally know lots of children who have been completely recovered after going on it. For example someone I know was once crippled with full body RSD and now they are completely cured and living a normal life, playing sports etc.

Please do pm me if you're based in the UK and want more info and want to know who you need to get a referral to etc. and I will be happy to help. I really do recommend it.

Estrella

Hey Terry.

Im sorry to hear your son has rsd

I have heard of this dr and contacted him a few times as well as go through his program and seen the dvd. I really am not trying to be rude or offensive, but I HATE dr Sherry.

His program is a lot worse than the dvd shows. and it isnt quite accurate. the "two month program" lasted 4 months and i got discharged bc the pts didnt know what to do at that point even though i was just as bad, if not worse, than when i started. and in the dvd, i think they say they never release a patient until they r ready.

He refuses any form of medicine for pain, swelling, etc. And he is very set in his beliefs on rsd and why it can happen and etc.

Im not saying he hasnt been successful, but i have had horrible experiences w/ him and i know a few others who have too. and i emailed him with some issue earlier on w/ my rsd and his reply was quite rude.

Dear Terry,

I mentioned in my last post that I had heard of one person who had a negative opinion of Dr Sherry and realise it was obviously Nikki who had a bad experience. It is a shame she was not able to complete the program but it does not suit everyone and so it was best she withdrew from the program.
I am so sorry that she was not one to benefit from Dr Sherry's treatment
I believe that his program appears to be mostly successful according to the overwhelmingly positive anecdotal and statistical evidence available.
Of course there are circumstances where for some reason or another there is a lack of respect or trust for a doctor, but his program is based on one in which medications which are usually not helping anyway, are reduced. It is absolutely the best thing for a child to be able to manage an illness such as this without medications if there is a way. Medications notoriously loose their efficacy as time goes by and when there is so much life ahead it makes sense to find an alternative if at all possible.The side effects can be so horrendous in the long (and short) term.
There is a high level of compliance needed with his program and patients are made fully aware of the expectations of the program before they sign up to do it.
There does need to be a relationship of trust between patient and caregiver where there is a realisation that it may require some tough times to achieve the desired outcome.
I keep my fingers crossed that you and your son have a truly positive experience from this--it definitely seems to be the best option for him at the moment.
Love Tayla

Hi Nikmco,

I'm so sorry you didn't have a good experience with Dr. Sherry - thank you for your input. I realize everybody's experience is going to be different, but at this point we have no other alternative. Jesse has been sick since Sept. and the meds haven't helped at all. He is going to school on the recommendation of Dr. Sherry and I have to say, it's been good for Jesse, though at times difficult - mostly in the morning.

What are you doing now for your RSD and where do you have it? I hope that you find a way to reduce your pain. Let me know if you have any other suggestions for us - we're open to anything.

Terry

Hi Tayla,

Thanks again for your warm wishes. As I said to Nikki, we have no other alternative and we are happy to have the chance to try this. How are you feeling - where is your RSD?

I wish you pain free days and nights and of course, a cure.

Terry