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Reflex Sympathetic Dystrophy (RSD and CRPS) Reflex Sympathetic Dystrophy (Complex Regional Pain Syndromes Type I) and Causalgia (Complex Regional Pain Syndromes Type II)(RSD and CRPS)

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Unread 11-25-2012, 12:31 AM   #11
kgrowl
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Originally Posted by tos8 View Post
I am sorry hes been in so much pain! I am on valium for spasms aswell. However he needs a more consistant dose of it. I also take soma. there the only 2 meds that will help with the spasms. I hope he can get relief soon!
I have given him a more scheduled dose so he stays on top of it before the get bad. That does seem to help. I will check into Soma. So many of the medications are not safe for kids. Ugh.
Thank you!
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Unread 11-25-2012, 01:08 AM   #12
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I know how difficult it is to be the mother of a child with CRPS. My daughter got it after a car ran over her foot 4 years ago. She is older than your boy, so it must weigh all the heavier on you as he relies on you so much. I am so sad that he has to deal with this condition, however please do not lose hope as younger patients have more brain plasticity and so there is better hope for remission.

You mentioned the Mayo Clinic. Does he have a good Pediatric Pain Management specialist there who can direct his overall care? You say you have not had a lot of luck there - what kind of doctor is managing his care?

My PM is an anesthesiologist. My daughter's primary was a neurologist, although he referred her to the anesthesiologist for much of her care. As you have been dealing with this for a couple of years I expect you know quite a bit about the process of crps, and that he has had the usual rounds of nerve blocks?

You didn't mention how he was doing while he was on the Neurotin or what the reason for weaning him off it is. The ER is generally NOT up on CRPS and you may even find (OMG!) doctors who don't "believe in it" there.

I take clonazepam for spasm relief twice a day, but his appear to be quite severe, and from what i have read the baclofen is for such cases, but he had a bad reaction to it. Maybe your PM could prescribe something for him to take with the baclofen to reduce those side effects.

Since going back on the Neurontin have his other crps symptoms been reduced?

It is SO difficult for a young growing boy to experience this especially at that age. I am sure he wants to be out and about with his friends. For old folks like me (52) the condition is isolating. I can't imagine how difficult it must be for a 12 year old who cannot do what "the gang" is doing.

Sorry, this post is getting a bit long, but I really feel for you as a mom. I can't recommend a doc in your area. I did a Google search:

"pediatric pain management physicians minnesota crps rsd"

which turned up a list of some doctors you might consider. I'm not sure where you are in Minnesota (I used to live in Minneapolis - brrr!)

Also, for YOU! RSDHope.org has a site for caregivers, and one of the items on the site is an RSD Hope Teen Program offering kids the chance to chat with other kids.

You need to make sure you are getting what you need in order to be there for your baby. (My baby is 22 now, and has been in remission for almost a year, but there are signs that "it" is returning).

Take care. Hope there is something of value in this post for you. I truly care and hope that your son is able to find the right combination of medications and treatments to live a full and happy life.

Love,
Jenny

Jenny,
I am so glad your post was this long. It was very thoughtful!

To answer a few questions....Mick was diagnosed right away by a very impressive ER doc. I know many people go months without diagnosis. We saw a "team" that week that included Psych, Pain Anesthesia doc, and PT doc. He started therapy right away and was started on Neurontin and a few other meds that have now been discontinued. I have been very frustrated with his pain doctor. The first thing he told me was to avoid all these sites that talk about RSD/CRPS as they are "full of false information." As a nurse, I have experienced how the internet can cause unnecessary worry. So, I listened. However, I found myself asking him why he had no other suggestions except a handful of pills and my son was suffering tremendously. Then I read his papers and publications as he was the "expert". Funny thing, he goes into how important spinal blocks are for children, yet that was never part of his treatment plan. When I brought it up, repeatedly, he would say we could increase Neurontin, add Amitryptiline, etc. He kept dancing around nerve blocks. I had to suggest trying Lidocaine patches. I had to suggest doing the Ketamine, Amitryptiline, Lidocaine cream. He would look at me and say, "We haven't tried that?" Eventually, the Neurontin was in his system enough he got some relief. It took months. Last summer, I found out from an Anesthesiologist I know, that this doctor who is the "CRPS specialist in PEDS" does not DO spinal blocks. His colleagues consider him a joke. The level of arrogance is sometimes astounding. So, he has NEVER had a block!!! This infuriates me. This doctor would not call it officially CRPS for over a year, hoping he would go into remission. This made things very difficult with school as they did not believe Mick or ME because the doctor wouldn't confirm it. (That is another can of worms)

The Neurontin was working fine and other than sleep meds and Prozac, he had weaned off everything and was functioning with minor limitations. The Neurontin was weaned because of side effects of teeth discoloring and weight gain. Plus, he seemed to be in remission. No one expected it to come back this hard. I assumed he would have a bit more pain and maybe we could just be on a decreased dose. Nope, he's on more meds now than he was at the worst before with minimal relief.

I have searched out some other sites. Mick has become very isolated. Kids accuse him of faking. He does have a few kids who visit and spend time. We finally have tutors, but he only accomplishes a little.

I just feel like no one has his interests in mind except me.
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Unread 11-25-2012, 01:22 AM   #13
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Hi Kristen,

Welcome, I am a mom of a child with RSD/CRPS, it is a horrible, horrible disease. She was misdiagnosed for several years. She was 11 when it began, she is now 19. I am going to give the best advice you will ever hear. Take him to an in hospital pain program. My daughter did Cleveland Clinic. He is young he could go into remission. You have to be diligent. But, you can't do this alone. If you are on FMLA make the time to call the Children pain clinics. There are Ronald McDonald houses to stay in. The longer you wait the worse it will get. He needs PT/OT/Pool Therapy, psychotherapy, and to learn to live with this pain. There are so many things that they are taught. My daughter still uses the techniques that she was taught. It is a grueling, brutal program, I will not lie. But, it did give my daughter her life back. I am not saying it will cure him, but it will help him. My daughter takes Cymbalta for her RSD, which has worked for many years. She did not do well on neurontin. She also takes baclofen, it gave her headaches as well, but they went away after a while.

I hope you take my advice, my daughter has had a long painful life, but she is now in college and dealing with her pain. She learned many techniques to help her with her pain, through the program. Give it a shot, it is worth a try. I will pray for you and your son, stay strong mom, you are his only advocate, so push forward for him.

Sandy
Thank you Sandy. We actually have done a pediatric pain rehab program and he does use many of the techniques used there. He was too young for the program the first year, but last Feb they opened a 10-13yr old group. Unfortunately, because I reside in the same city as the program we were unable to stay at the Ronald McDONALD house. So, a key part of the treatment and bonding with the other patients was lost. They would not even allow him to watch movies with the kids in the eve. I do agree that the program is wonderful for parents and children.

He actually was in remission for over a year. This is a relapse. I pray for another remission. Physical Therapy for Pediatrics does not do pool therapy. Adults do, but not for kids. Ugh!!
As with many people with CRPS, Mick developed Autonomic problems. He suffered from a very high heart rate and began having horrible headaches and was diagnosed with a rare headache disorder called Hemicrania Continua....an autonomic headache condition. I am not sure if they will try Baclofen again because of that.

Thank you again for the encouragement, support, and kind words.
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Unread 11-25-2012, 02:35 AM   #14
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These 2 may help


http://www.openfocustraining.co.uk/exercise.html

http://www.paintoolkit.org/assets/do...t-Nov-2012.pdf
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Unread 11-25-2012, 08:24 AM   #15
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Thumbs up Please consider the Pain Mngt. Cnt. at the U of M's Amplatz Childrens Hosp.

Dear Kristen -

Your son's story broke my heart. On so many levels.

I too grew up in Rochester, many years ago and lived a few blocks from St. Mary's, close to Folwell School; and in those days, the Clinic could do no wrong. And I mean it. Flash forward 40 years and I was diagnosed with a fresh case of CRPS in Los Angeles, and after a few agonizing months in which I got very good treatment out here, wanted to be seen "back home." Big mistake. Little did I know that the institution on whose staff my grandfather had proudly served for over 30 years had morphed into something he would never of recognized, into a conglomerate that still offered first-rate care if whatever you had was going to kill you, but otherwise now made its bed with the workers' comp carriers of the world, with a dedication to keeping down the cost of care of chronic illnesses. First, last and always.

So after thinking that I had pulled some strings, got an appointment with the Clinic's leading peripheral neurologist specializing in CRPS who promptly told me I didn't have it; only later did I learn that at the same time she was putting the finishing touches on a long-term review of patients records that would later be debunked* for having grossly underestimated the incidence of CRPS in the population by using the most restrictive possible criteria for the disease: something that would primarily benefit workers comp or disability insurance carriers who could then apply those criteria to deny meaningful treatment to patients with fresh - acute - cases of the disease, when those treatments stood the best chance of making a difference. In fact, the only "treatment" I was offered was a three-week program run by the Department of Psychiatry that used a largely one-size-fits-all combination of occupational and cognitive behavioral therapy that would first convince patients that there was no medical hope for a cure and the best and only thing they could do was learn how to valiantly soldier on. (At the same time, I learned through a friend that another one of their "CRPS specialists" was tone of the leading expert witnesses in the state, testifying for all manner of carriers that the injured party did not in fact have CRPS.)

That said, when I was over the next few years for for (1) an evaluation of a precursor to multiple myeloma, (2) a potentially nasty amaloid (which turned out to be pulmonary sarcoidosis that went into remission on its own) and (3) a work-up following what could have been a very serious heart attack, they were great. But for treatment of chronic non-life-threatening conditions that will only increase its average per patient cost of care - such as a good friend's all but debilitating psoriasis - dream on.

That said, I was encouraged to find online the Pain Management Center of the University of Minnesota's Amplatz Children's Hospital, with the following description of its services:
The Pain Management Center at University of Minnesota Amplatz Children’s Hospital is dedicated to improving lives through state-of-the-art expertise in pain assessment and management. We use a patientcentered, biopsychosocial approach that incorporates interventional, medical, physical and psychological therapies. Each is tailored to the patient’s needs and is in collaboration with their primary-care providers.

University of Minnesota Amplatz Children’s Hospital takes a multidisciplinary approach to the prevention, evaluation, diagnosis, treatment and rehabilitation of painful disorders. Our team of specialists includes pain experts from neurology, physical medicine, rehabilitation and psychology. Such specialists offer advanced therapies, including drug treatment, pain rehabilitation and management, injection therapies, and implants to address complex and multidimensional pain. [Emphasis added.]
Sounds like a dream, doesn't it? (Or at least in comparison to what you have seen so far.) Please note that it lists the same address as that of the Fairview Pain Management Center, with whom its physicians are also affiliated:
606 24th Ave. S.
Suite 600
Minneapolis MN 55454
(612) 273-5400
Among the physicians listed, two stand out in particular, its director, Miles Belgrade, MD, a pain management physician trained in neurology, and Orlando Charry, MD, who lists his area of interest as follows:
I take interest in pain problems related to cancer, complex regional pain syndrome and musculoskeletal pain with specific expertise in implantable modalities and injections.
And note that Dr. Charry is listed as a "diplomat" of the American Board of Pain Medicine, the most selective of such groups in the country, which requires that every physician seeking its certification both complete a one-year clinical fellowship, over and above a basic residency, and thereafter pass an 8-hour written exam.

To me, it sounds like a plan. Good luck!

Mike

* How common is complex regional pain syndrome Type I? Bruehl S, Chung OY, Pain 2007;129:1-2.


PS Giving the matter more thought, please be sure to have considered a comprehensive "multi-modality" program on the order of the program to which SandyS refers, the [no relation: this guy's a hedge fund manager] Mayo Family Pediatric Pain Rehabilitation Center (PPRC) at the Boston Children's Hospital in Waltham, MA, a teaching unit of the Harvard Medical School, specializing in the treatment of pediatric patients with CRPS. And for a Commentary discussing the program in some detail, see, Development of an intensive pain rehabilitation program for children and adolescents with Complex Regional Pain Syndrome, Logan DE, Chiang G, Condon M, et al, Pediatric Pain Letter 2010;12(1):1-6. And I would urge you to review the Commentary carefully.

Now, it may well be that the program at the University of Minnesota's Amplatz Children's Hospital comes very close to this: I note that the program at the Boston Children's Hospital appears to be an intensive out-patient program, which may be at first blush quite comparable to the one in Minneapolis. Please note, however, that the Boston program appears to be specifically focused on the treatment of CRPS and its professionals may well have more expertise in that area. And I note from my experience with one such program in Los Angeles that it is the quality and experience of the individual professionals, right down to the physical therapists, that makes all the difference, for good or bad. (And in that regard, I would urge you to find a program where many of the physical therapists hold the 4-year post-graduate degree of Doctor of Physical Therapy, DPT: from my personal experience their knowledge of neuro-anatomy is unparalleled and bore no resemblance to the 9 years of PT I had received beforehand.)

But wherever you and your son are fortunate enough to go, PLEASE EXHAUST THE RESOURCES OF SUCH A PROGRAM BEFORE CONSIDERING SURGICAL ALTERNATIVES: and I say this notwithstanding at least one respected study out of the Karolinska Institute in Stockholm, showing that a group of largely early teens - with severe CRPS and resistant to other forms of treatment - went into apparently permanent remission through the use of spinal cord stimulation, at a level higher than would be otherwise be predicted in such children, AND INDEPENDENT OF DISEASE DURATION AT THE TIME OF TREATMENT INITIATION. Spinal cord stimulation in adolescents with complex regional pain syndrome type I (CRPS-I), Olsson GL, Meyerson BA, Linderoth B, Euro J Pain 2008;12:53-59. An unimaginable result for an adult with a "disease onset" of more than a year, where the best evidence suggests that there is little or no palliative relief of CRPS from SCS after three years. See, e.g., Spinal cord stimulation for chronic reflex sympathetic dystrophy--five-year follow-up, Kemler MA, de Vet HC, Barendse GA, van den Wildenberg FA, van Kleef M, N Engl J Med. 2006 Jun 1;354(22):2394-6.

Finally, for what may well be the best and most comprehensive article on the treatment of CRPS in children to-date, check out Plasticity of Complex Regional Pain Syndrome (CRPS) in Children, Stanton-Hicks M, Pain Med. 2010;11(8):1216-1223.
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Last edited by fmichael; 11-25-2012 at 08:02 PM. Reason: PS based on comments of SandyS and adding a few journal citations
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Unread 11-25-2012, 09:37 AM   #16
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Have you thought about putting in an extensive program for children. I know someone' son did great and is back to playing football . I think it's called the Boston hosp for children but I can put u in touch w her...just let me know

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Unread 11-25-2012, 10:48 AM   #17
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There is a great Dr in boston at there childrens hospital. They have an intesive therapy program and a big support program. My nuero spoke VERY highly of her. She was willing to even see me despite the fact that im a young adult because she knew my neuro and he wanted me to see her. Unfortantly I knew that because of my age there isnt a chance of remission for me threw PT programs like that. But its a 3 weeks in paitent program and she works very hard for her RSD ped paitents. So i would really look into there program if you can.
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Unread 11-25-2012, 11:47 AM   #18
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My daughter did the program twice. She went into a form of remission and then had another accident with her ankle. So, I called them again and she redid the program. So, I think you should try that option as well. She also had migraine headaches. gastroparesis and POTS. so many chronic diseases go with this. I wish you luck, I sent you an email so look at it for some other information that I am not allowed to post in my reply.
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Unread 11-25-2012, 04:33 PM   #19
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My daughter did the program twice. She went into a form of remission and then had another accident with her ankle. So, I called them again and she redid the program. So, I think you should try that option as well. She also had migraine headaches. gastroparesis and POTS. so many chronic diseases go with this. I wish you luck, I sent you an email so look at it for some other information that I am not allowed to post in my reply.

Sandy -

I woke up after reviewing your comments and amended my post accordingly. Thanks.

I would, however, note for Kristen's benefit that the magnitude of the sympathetic dysfunction of CRPS (and all its attending horrors) is - at least to the best of my knowledge, information and belief - much more of an issue in adolescent girls and young women than anyone else in the patient population, for reasons which may still be unknown. See, e.g., A comparison of dysautonomias comorbid with cyclic vomiting syndrome and with migraine, Chelimsky G, Madan S, Alshekhlee A, Heller E, McNeeley K, Chelimsky T, Gastroenterol Res Pract. 2009;2009:701019. Epub 2010 Jan 6.

Mike
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Unread 11-29-2012, 05:46 PM   #20
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After these full body spasm episodes, he loses all feeling. We just carried him upstairs, dead weight. Anyone else lose feeling for approx 30 min after a bad episode? I'm afraid he'll need a wheelchair or that I will need Home Health Care for him if this keeps up. I am on Family Leave again because he can't be alone. Help.

I am sorry your son goes through this. I too go through such bad spasms my full body after about an hour non stop I just go limp and cant move and if the spasms are so intense I loose consciousness for somtimes up to 3 hours.

I take valium at high doses as well as ativan, baclofen and a few anti-eleptic meds and nassal ketmine helps also. There are time when nothing helps and I do end up in the hospital to get IV sedation to stop it.

Niki
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