Hope For Children With Rsd/rnd,crps
 

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:hug:

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

Terry,
 

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:hug:

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

I am so sorry to hear that you did not find Dr Sherry's programme a success Nikki, but I hope that you do find something that will help your RSD.

Terry, I wish you're son the best of luck with the programme. It will need a lot of determination and strength, but it will pay off. I would like to offer one word of advice to you though- that you and ur son begin the programme with a positive mindset, despite the fact that you may have heard some negative experiences of it. For the best results from these intense rehab programmes, positive thinking is vital, it is important to really believe that the programme is going to help your son get better. Remember recovering from RSD is a battle, but it is a battle that must be fought and one that can be won. :)

With regard to stopping medications, the idea is that seeing as most children report no pain relief from their meds, there is not much point taking them, especially because of the effects of them in the long term- as tayla4me already mentioned. Therefore they are stopped. As soon as I begun my intense physio prog my medication was stopped and I havent taken anything for my RSD since then.

Again good luck to ur son.

Estrella

Hi Estrella,

Thank you for your kind words. I agree with you in that we have to go in this a positive attitude that this is going to help my son - to think otherwise would be self defeating. I'm not sure if my son believes it's going to help, but we keep talking it up and we've told him we will never stop trying to help him.

I'm glad to hear you too stopped meds with physical therapy - did you or do you find the physical therapy helpful? I wish you pain free days and nights and I really appreciate your support.

Thanks,
Terry

Hi terry

Yes physical therapy has really helped me. I went on the rehab programme at GOSH which I mentioned earlier. It uses a multi-disciplinary approach but mostly focuses on desensitization and physio; it was one of the hardest things I have ever done but the best thing I have ever done too. It totally cured the RSD in my arms and back. It also greatly improved my leg. Although my leg still hurts a lot, it is far less sensitive to touch and I have regained full range of movement. I have learnt to ignore, well cope with, the pain (as far as that is possible with RSD!) I continue to do physio every day and I am certain that with time my leg will recover completely too.

The reason exercise is so important with RSD is that it releases endorphins,(which actually translates to 'morphine within'!), the natural painkiller inside our bodies. Exercise also increases oxygen supply to the muscles which helps to reduce swelling and discolouration of a limb. Increased oxygen supply is also known to decrease pain- which is why some people find help from HBOT. Exercise regains function of the limb and also restores muscle strength. It also boosts energy levels in the long run because as your muscles get stronger, your stamina increases so you can do more. Regular exercise improves sleep quality so that coping mechanisms are better and you are more able to cope with the RSD pain.

Sorry about such a long message, I could ramble on for ages about this- as you might have guessed I am a huge fan of these intensive physio programmes for kids! But for good reason I think because I know so many children with success stories after going on them.

I hope this helps. Keep up with the positive thinking :)

Estrella

Hi Estrella,

I am so glad that the program has been helpful for you - it definitely gives me hope!
I hope your leg gets better soon and that you can be totally pain free. Keep doing the hard work - it seems to be working!!

Thanks for all of your encouragement.

terry

Hey terry.

i really hope jesse benefits from the program :)

i currently have rsd in all 4 limbs (started in ball of right foot), my entire backside (head to toe), sides, so its pretty widespread. i started the program w/ rsd in both arms and from knees down but it spread whhile at pt.

right now for the rsd, i am seeing a pain management dr. he is really nice and respects my decisions. i am also seeing a dr for my blood pressure. i see lots of other drs every so often. i started lyrica a few weeks ago. since taking it, less flare ups but more severe. im on sleep medsalthogh they really dont work well... i am starting pt again in a few days. the lady seems nice. she said she is taking it nice and easy and will stop if it becomes too much. i have tried acupuncture........did not go very well....at all.

so far, i havent really found anything that has really helped my rsd. i do find it helpful to let my teachers know whats going on. they help me out a lot. one lets me lay on his couch during class :D, one is really good at telling if in having a bad day (she is a nurse, teaches health science technology) and will let me lay my head down and stuff, onewalked me to the nurse today in the middle of class. i hope your son has understanding teachers. that really helps. i do try to go to school as much as i can. i went homebound last year and HATED it. haha, try having ur spanish teacher offer to teach you all ur classes and not speak english very well. but being w/ my friends at school helps out. but sometimes school can be hard to tolerate. you have to know when its too much and when to take off a day or two.

right now, the only suggestion i have is if you dont already have one, try to find a pain management dr that your son trusts. if he doesnt like the dr, then much wont get accomplished.

good luck to both you and your son. i hope you have success in dr sherrys program. feel free to keep in contact.

nikki

by the way, for rsd in jesse's stomach, how do they do pt with that?

Terry, I am new here...my name is Tracee. I am 28 years old and have had RSD since I was 16 going on 17. Since my Dx I became self educated in RSD, For about 5 years I joined a few groups and became very involved in RSD awareness. Then I became tired and completely gave up. It wanst until I found out my rsd may have traveled from my Rt leg to my Rt foot that I started researching new treatments. Thats how I found this forum. Anyways, I would just like to say, (having RSD as a young teen myself) My parents and I were told by many Drs that I was to young for any kind of prescribtion drug pain relief and that PT and water therapy would be suffient. As a child in pain, with no coping skills and only my parents to lean on, you need to question the doctors...dont let their word be set in stone like theyre God. Because thats what my parents did and I am paying for it now. I do not blame my parents at all, in fact I put them on a pedistal for what they scarficed for me to get the treatment I needed. However, in the beginning they made me do everything the doctors told me to do. (arent we raise that way? Not to question our doctors)Pain does not discriminate :grouphug:so doctors shouldnt either. Adults are give medication to help their pain while children are left to suffer because they are to young. This is crazy. I know it is hard to make decision in the beginning, thats why I posted to you. This program may work and it may not. I am not familiar with this doctor. However, I urge you to ask questions, lots of them. If the doctor becomes offended in any way then walk away because he or she is not helping your sons best interest. A great doctor will answer as many questions as you can throw at him or her and not bat an eye. I hope this post made sense. I am not a good writer, I am great talker. LOL. I hope things go well for you, your son and your family. Tracee

Hi Tracee,

Thank you so much for your advice. We tried medication first - amitriptaline and neurontin - neither helped the pain. At this point our hope is that the physical therapy works, but if it doesn't I will be out there looking for someone else to help my son - I don't want him to suffer if he doesn't have to. Dr. Sherry has had some good results - I have to have faith that we will too - I will deal with the alternative if it comes up.

I'm sorry you have had such pain in your life - I hope that you are finding some relief from medication, exercise, etc. I have my son seeing a counselor to help cope with his feelings - if you have any other suggestions for me I would love to hear them.

Thank you again and I wish you pain free days and nights.

Terry

Hi Terry,

Do you have an appointment time yet for Jesse? I am hoping it is really soon.
One of the good things about Dr Sherry is that he is very transparent, he explains why he has such wonderful results but makes no effort to hide the fact that it will be hard work.
As you know, medications notoriously do not help children with pain and to commit a child to a lifetime of medications which have poor pain relieving effect butsome very shocking side effects is why he is seemingly anti medication.
I am so sure that yours and Jesse's determination will see him through this treatment with success.
Love Tayla:hug:

Terry
 

Hello my name is Deb, I am raising a granddaughter that has RND reflex neurovascular dystrophy , we just found out in october , she goes to childrens institute twice a week for physical excersise, she will be going in soon to stay for more physical theraphy, waiting on a list.LOng story short , astma attack, ent doctor put her under and in recovery she has not walked since,
when your son was diagnosed with RND did you have a hard time finding things on it?? I joined a couple od groups with RSD and they told me they never heard of it, and they dont respone back.

Deb

Hi Deb,
We took our son to the ER multiple times and then we were finally told to see the diagnostician at CHOP - that is how we received the diagnosis. He tried to treat my son with meds, but they didn't work - we were then referred to Dr. Sherry - he confirmed the diagnosis and we are waiting for the physical therapy treatment. This all started in Sept. and I can say we were finally diagnosed by Dr. Sherry in Jan. - but we are still waiting for treatment - very frustrating. We have an appt. with him on Monday - I'm hoping for some good news.

Where is your grand daughters RSD? I hope you have better luck with this group - they have been very helpful for me. I'm sorry if I am late getting back to you - we went on vacation to get my son exercising in some warm weather - I think it was helpful!!

I wish your grand daughter well - I'm here if you need to talk.

Terry

Hi Terry!
My name is Linnie and I was first diagnosed with RSD when I was 12 as well. I went to PT for a long time, and my symptoms kept getting worse. No one would listen to me (I was literally tied to the exercise bike at one point) and wrote me off as being whiny. Then, like some intervention by the universe, my PT went on vacation and I got a new PT. She finally listened. But my RSD was completely exacerbated. It wouldn't be as bad all these years later if someone had just listened. And no ice!

I just want to beg you to listen to your son while he is undergoing this intensive PT. With RSD, the phrase "no pain no gain" is most often a bunch of BS and is what got us here in the first place. I know how traumatic it was to be in so much pain but nobody listened to me because it was "for my own good". And at that age I was desperate to do anything to make it all stop so that my parents would stop worrying. Just keep an eye out- PT can be damaging too. Hopefully it works for you guys.

Also, sometimes neurontin and clonidine have to be continued for quite some time before they become effective, and they can help to prevent spread. Just something to think about!
Linnie :hug:

Hi Linne,

Thank you so much for your advice - I will definitely listen to my son when he starts PT. As far as the meds, he wasn't on neurontin all that long, and the doctor in charge of the PT program doesn't believe in meds. If this doesn't work, I guess we will try meds again.
Where did your RSD start? It is hard to find someone with it in their stomach - I just want my son to be better - i feel so bad for him.

Thanks again Linnie and if you ever need to talk, I am here.

terry

Hi Terry,
Good luck with the therapy program. My daughter had abdominal RSD for 1-1/2 years and also participated in intense p.t.. She gained function through this program but not pain relief. We later learned of hyperbaric oxygen treatments, with that finally stopping her pain. I would so encourage you to try these treatments if he does respond to p.t. alone. Wishing you and your son the very best!!!
jenno

Hi Jenno,

I would love to talk with you more about your daughters symptoms, etc. Jesse has constant stomach pains with the burning sensation and stabbing. His pain is a constant 7 but with episodes of 10. He is also nauseous, has headaches, body aches, and constant fatigue. Does this sound similar to how your daughter felt?

We struggle to get him to school everyday - it's very hard. He would like to be homeschooled, but I want him to be with his friends and to keep getting up and out for the day. I feel like the meanest mother in the world.

I'm not sure how the physical therapy is going to work. I would like to learn more about the oxygen treatments. Where was your daughter treated? We live in the Philadelphia area, but are willing to travel anywhere to get him help.

I would appreciate any advice you have to offer. Thank you for your support. I hope your daughter continues to be well.

terry

Hi again Terry,
I was very happy to hear back from you. I had seen your post on another website a few weeks ago and tried to make contact there but had not succeeded. It is so hard to find information about abdominal RSD; I know because we searched and searched for hope and answers. I am new to this site so I am not familiar with the rules etc. I noticed that there is a place to respond and a place to post a response. I am not sure what the best way is to communicate; but I would very much like to think that Sarah's experiences and the lessons we have learned might possibly benefit your son. I am in a bit of a hurry right now, but will check back later. Let me know if you are aware of the best way to correspond. Talk with you soon!
jenno

Hi Jenno,
Thanks for writing me back! I sent you a personal message, but you can email me directly at warburton48@msn.com

If it doesn't show my email, send me a personal message by clicking on my name to the left and click on to send a private message. To check for a private message look at the top right of the screen and it will tell you if you have one - then just click it!

Look ing forward to hearing from you again.

Terry

Terry,
I am new to this. My daughter was just diagnosed last week with with r.s.d. in her hand. To make a long story short I now believe that this is also what is wrong with her stomach. She has had problems for over a year now and just spent two weeks in and out of the hospital. After many Drs they came up with abdominal migranes and the catch all I.B.S. Can you give me any info on abdominal r.s.d. It is so hard to find info on it.
Thanks
Jonee

Abdominal RSD
 

Hi Jonee,

Please check your private messages.

Jeanne

jonee

oh, my gosh!

this is the very first time I have ever heard of another person being diagnosed with abdominal migrane.

Doctors for years insisted I had IBS. Treatments did not work. Then, a family doctor had me keep a log of how I felt when I had "episodes" and an internist looked it over, and came up with this "abdominal migrane"... at the first sign of an episode I took midrin, and it was a cure! Wow! Now, doctors still look at me like I am nuts when I say abdominal migrane. I had problems from the time I was 7-8 years old. Now that I am 50, I no longer have problems.

How odd, I have never heard of it in anyone else!

hi terry
i was 16 when i got rsd it started in my rt shoulder neck and arm. and now is head to toe and internal. there wasnt such a thing 11 yrs ago for kids with rsd at all. pt didnt work for me at all. my rsd spread to all four limbs in a matter of month.

has your son had any blocks or anything else done for his rsd?
i know that it was said meds dont work for kids and on my end that is wrong. i didnt ever take pain meds till i was 20+ but i was orginal on neurtion and remaron for sleep .then i had indwelling catherder that delivered for 1 wk of colondine and buvupicane (sp) then they took it out and did it again while i had these treatments i did have pt 2x's a day while inpatient.

but like someone else said please listen your son!!!he is goin to know when enough is enough or its too much.
the key to rsd is finding a doctor that really understands about rsd and the complexs that come from it. i have been through so many docs even mayo clinic and only 4 of them have ever really treated me and helped

i really hope that this will help your son
you can PM if you have any other questions
carrie

What is midrin? Is it a RX?

Just to let you all know that when I last heard from Terry, she told me that her son, Jesse had undergone the Intense PT Program and that his RSD was now in remission. She said he still had a little pain but it was usually only about a 2 and he can now go to school full-time and do all the things that he wants to with his friends!!

I just thought i'd let you all know and keep you all updated as it's nice to hear such good stories and gives us all hope!! I hope you're all OK!

midrin was a prescription medication used for migrane. I do get minor regular migrane now and then now... and last time I wanted a script of this, it has been taken off the market, because there are newer, "better" options now. Not for me - have not found anything that works as well.

Although, now that I take topamax for the RSD, I have very few migrane type headaches.

The RSD has moved up my neck, into my face and up my scalp, though, and I have had a constant low, thud headache for a year that nothing has relieved.

Ahh the intesrting Dr.S
 

His program is a ray of hope for most but for some of us he is a joke completely. I have been through his program 3 times in my life the first 2 worked but the last failed completely. He has an ego to large for his head and won't except his program can fail and will blame it on anything and everything he can. In my view his program can only be for those kids in beginning stages of RSD/RND or if its situated to one spot externally. Internal RSD/RND destroys his program cause his program can only deal with external. I used to think he was a good doctor the first 2 times i was there but than i woke up to the fact that hes a joke. I am currently on the pathway for ketamine in april and am hoping this works beyond all else. In my opinion the RSD(RND) patients need a real RSD doctor that has actually experienced this disease cause its unlike any other.

A Christmas Gift
 

My son was very ill for four and a half years with extreme pain all over his body. Over 50 specialist could not diagnose the cause. For pain management the doctors recommended a Morhpine pump implant which was done this spring. He walked with the aid of a walker in the house and needed a wheelchair to go places. He missed about a year worth of school.
The Chop Diagnostic Center told us he RND and that Dr. Sherry could help him. He went in a month before Christmas in a wheelchair and came out Christmas Eve walking on his own with no Morphine. In four weeks Dr. Sherry and his staff of miracle workers did the impossible.
Christmas day my son went for a run for an hour, yesterday we worked out together, and today he is at the driving range hitting golf balls 250 yards. My son now has a life! In a week or so the Morphine pump will be removed.
For those who are sceptics and have there doubts, keep it to yourselves. I have gotten to know Dr. Sherry and he is not only a true proffesional but he has a heart of gold. It is possible you don't have the correct diagnosis.
Thank You Dr. Sherry and staff at CHOP!!

Are people still posting on this thread?
 

Hi, i'm new to this group. I've signed up as my sister-in-law's, eldest daughter has crps. I just wanted to check that people are still reading/posting to this thread as I'd like to recommend it to her. Thanks in advance for your help x

Hello Julie and welcome to NeuroTalk. The fact that this is an old thread really doesn't matter because by posting to it yourself, you've brought it back to the front page.

Our RSD forum is an active one so I am sure you'll get the support that you seek for your sister. Please feel free to ask for any information that you need.

Thanks for getting back to me. I'll recommend this forum to my sister in law once she gets settled into her new house :)

My daughter (8) went to Children's Hospital in Minneapolis, MN. They were SO good with her. She had a "fresh" case (about 2 months); when I first called they told me their waiting list was months long for their pain program, but when I explained what the probable diagnosis was (being that I had a history of RSD myself), they got her in within DAYS. They were open to medication, although my daugther wasn't (though she did use the patches on her foot). They had a PT program that worked with her (made everything a "game" to appeal to the kids), as well as psychotherapy--they really worked as a team to come at it from all angles. They even had social workers willing to advocate for her with school modifications. I just can't say enough good things about her treatment there. No egos....just a team of people trying their best to help give kids a quality of life. LOVED it! She recovered quickly; I don't know the program statistics but I think they have pretty good success with kids. Granted, my daugther only had this for a couple of months before treatment started so it was probably much easier to treat. But I do know that this team would go above and beyond to help kids get better in whatever way they can, and they are there to support the families every step of the way. :) Really, really, really loved it there.