I moved this post here so more of us can see and respond I hope no one minds.
~~~~~~~~

reguards to RSD and dystonia/Dr. Sherry/my daughter

-----------------------------------------------------------------------

Hello to everyone... I am writing because about 3 years ago my daughter developed more severe pain than normal.. A year ago she was told finally it was RSD.. She went through the program in Pittsburgh,PA for extensive therapy as per Dr. Sherry believes in.. She was home for two weeks and then started with inability to walk on crutches to w/c.. Nobody could touch her.

SHe is 15.. Then within a few weeks she had dystonic movements we all thought it was a seizure.. Through admission to Cleveland Clinic and UPMC['s numerous times she was told it was in her head... I know it's not and that has caused her to get more depressed and anxious/frustrated.. Well, this is a short version/ she had a NG tube put in because now it is whole body dystonic movements.. It seems when the pain is unbearable the dystonia flares more.. She is on oxygen at intervals and bedtime.. She gets dead weight when the episodes accur.. We are treating in SOuth Carolina because nobody around here sees anyone under 18 or is unfamilier with RSD etc.. I truely believe it was the extensive therapy that caused the complications...

If you look up complications of RSD it is what she has... Peripheral Arterial Disease , Dystonia, etc... I am very upset with the community not able to help at all and the drs around here unfamilier with the diseases.. The only thing now is she was told its not rsd after 1 1/2 years and that its psychogenic.. I wish that there was a given diagnostic test for proof... She would love to be a normal 15 yr old.. She never knows weather or not she will be in a w/c or walking.. or total care or able to do for herself.. She gets nerve blocks and numerous injections.. Sympathetic electrical blocks etc..

She has damaged nerves in her feet/ low back/ muscle weakness throughout her body/ vision trouble at times/ hearing problems amplified/she has had botox/myobloc for the contrations.. Any support or groups known of in PA?? I am at wits end.. Its costly and is draining us..i have been her caregiver for months now and unable to work..

Please any info or has anyone else had these problems respond
Betsy

Hey Betsy

I SO understand what you are talking about and I am so sorry for both your families and your daughters experiences and pain!

I have RSD/ Dystonia!! To briefly state my story, I developed RSD when I was 16 (and I am now 21) and it is now full body despite many physio and other treatment things. I developed full body dystonic contractures and now have Botox in my neck and hands to reduces contracture pain but they can't do that for my legs as they have set. I only have functinonal use of my face and can't move from the head down. I am semi bed bound, hoist dependent and a wheelchair user with 24 hour care. I lost the ability to eat solids for months but survived without NG (despite Drs begging mum to let me have one placed - she instead started a new therapy called spoon therapy) but still have swallowing and mouth issues.

However, I am very lucky to be at uni studying psy and living away from home much of the time! I do know some people, especially teenagers, with NGs and tube feeds and who have full body RSD. Is your daughter in and out of a wheelchair or in it full time? Have you been treated at John Hopkins? They have started to use drugs such as Prialt and have lots of experience with pediatric RSD.

Hope this is some help.

Love

Frogga
xxxxxxxxxxxxxxxxxxxx

Hello!! Thanks for e-mailing back and responding... Brooke is in and out of the w/c so far.. After her nerve blocks/trigger point injections she is able to walk better but it doesn't last long enough. She has Peripheral neuropathy and about 50 percent of her lower extremity vessels blocked and on Plavix. Did you get told it was Psychogenic?? What about deep brain stimulator for the dystonic movements? Is this an option or is it not due to the RSD etc.? Please respond back and Brooke will be getting ahold of you she will be glad to finally be able to vent with someone knowing what she is going through. Brooke wants to know if you have the memory problem that really bothers her and eye blurring problem?? God Bless you and your family.
Love,
Betsy Ann

you hit a nerve. i have been complaining about memory problems and eye problems and muscle spasms. things have calmed down but they are by no means gone.

i actually went to the library yesterday and checked out a movie and the lady goes "didn't you just check this out?" and i told her that i didn't. she looked at my account and said, "you just brought this back!" i swear i don't remember it and the library only has like 50 DVDs. in this small community they all know me and they know what i've been going thru so she left it at that.

it drives me batty!

Hi Betsy, I am Desi.. nice to meet you, wish it could be on another topic other than pain! I too am so sorry to hear about your Brooke having so much "going on"! makes me mad to hear about a child, like Ang said. Gentle hugs Betsy.. And here are some for Brooke too. Love, Desi

just wanted you to know i was thinking of you today and i will remember brooke in my prayers tonight.



angie

Betsy, I am so sorry your daughter (and you) are going through this. We have several young folks here that she might be able to chat/vent with. ( I see that frogga has posted while I was writing this, lol.)

The symptoms you are describing are familiar to us ALL. rsd/crps sufferers have many symptoms that can come and go as the disease progresses. I am in my 14th year, and have gone through most all of them, lol. I am lucky, though, in that mine hasn't become full body.. only the limbs are affected.

"It's all in your head" in something many, if not all, of us hear throughout the years. It is frustrating as heck (can't use the word I really want to), but it's also something you must harden yourselves to. You haven't heard it for the last time.

As for getting treatment where you are, best of luck on that one! My honey Michael and I have moved, we call ourselves "medical refugees". About the best you could hope for in your area is your family dr./general practitioner caring enough to learn what he/she can. YOU will have primary responsibility, though... you will need to keep researching online, and downloading and printing helpful data to take to the dr. Luckily, you found us .. we'll be here in any way we can for you, and there are many links to many helpful websites to be found here.

RSD/CRPS is complicated to diagnose and treat... many dr.s don't find it to be "worth their time" to study up on. If you are in a small town far from a major medical center, then your dr. will most likely see few patients with it. I personally went from San Diego to Los Angeles to Lubbock Tx to Phoenix Az., chasing diagnoses and then treatment. Like you, finances made most options impossible.

Best of luck in your search for help for your daughter... she is very lucky to have a mom like you.

And this is for YOU I'm quite sure that YOUR needs for hugs and sympathy are not being met (we parents always put ourselves last). I can't even begin to imagine how frustrating, painful and hard it is to watch your child go through this. As much pain as I am in, I would accept twice as much if it meant one less child had to go through it.

The only "hope" I can give you is this: the few young folks who come in here, mainly Frogga and Unrouley1, are exceptional young people. I am pretty sure that having rsd/crps has been a major factor in their development, and they have grown into fine young women. Sometimes it takes major adversity for the young to become who they were destined to be.

it makes me so sad when i hear of another child with RSD. it makes me feel even worse when a desperate parent is pleading for help. there is NOTHING worse than feeling helpless when your child is suffering. i have a child with disabilities, but nothing like RSD.

you have found a good support group here. i live in ILL so i don't know anything about PA. However, there is a respite program available thru our Developmental Services Center. i don't know if that is nationwide or just something here. BUT, i receive so many hours of respite allowance per month for my son. i can pay a caregiver or they can send out one of theirs to care for my son for a few hours so i can get some relief. even if i stay in the house.

you can also try easter seals. i have never dealt with them personally, but many of my friends who have children with disabilities have told me to contact them for help.

also, there are companies that make anonymous donations for equipment - wheelchairs, ramps, machines, therapy stuff. you should check with like a hospital PR person or a therapy clinic. just don't be afraid to ask.

i am sorry i don't have any specific answers and i'm so sorry for all you are going thru. i will keep you in my prayers!

angie