my child hurt her foot 7 weeks ago. One dr casted her even though there was no apparent break for 10 days, and then gave her the cast boot. The pain is below the pinky toe. We went to another Dr a few weeks later, since her pain was not getting better and she still could nto work. He diagnosed hypersensity and perscribed PT. Over the course of 2+ weeks we got her past the point of where slight touch hurt and got her in a shoe! We even got her to skate (though not walk yet). Every time she put her foot on ground she would complain it hurts. She was walking on her heel. On PT on monday she even did take a few steps in pain.
Then tuesday morning came and she was in more pain than ever before. We are back to where the slightest touch, a sock, etc hurts her foot. We went to a new Ped Ortho who said it was RSD. I am trying to get into a pain clinic for children here in Atlanta and there is a 5 week wait, even with RSD!

All my child has done since yesterday is cry and say that the pain is even worse. I know that some of it is due to teh diagnosis. Her main thing is that she is insisting on getting an MRI. She doesnt believe that there is not something real wrong with her foot. She wants to know why she was almost walking on Monday and now things are worse again. That something ahs to be wrong with the foot since she was using it and it got worse. I have the same question.

The Dr yesterday said that after 7 weeks any real injury would be better and that in kids bones will break before tendons get hurt. he also said that the foot was somewhat red, though I could not see it as much as he sees it. I am waiting for the pain specialist to return to my call. I was faxed a bunch of info.

So why did she get better after therapy and using the foot and then get worse than before like that? Also, I read about Cleveland Clinic here, but what other Pediatric options do I have. What about meds? do they work. Mirror therapy. I tried to take away teh crutches, but she wont let me. It was the only way I could get her to school. She did nto want to go to school today period, but we eventually got her there. She is in private school, so that really helps. she has a friend that got to stay home with a sprained knee and got an MRI, so I am sure that is where her desires are coming from, but she doesnt understand that her injury is different. She doesnt understand how its messages going to brain, but the foot "physically" is ok. I was so hopeful when she skated last week.

One very sad mama.

I'm so sorry for your daughter and your family.

Now is the time to pull out all stops on getting her to the best doctors / treatments you can find!
She is lucky (in a way) that it was dx'd so early. Other's will have more advice and you've come to a good place..
RSD must be treated EARLY for any chance of a cure.
So, don't wait.
Get her back to her diagnosing doc, maybe for some meds, and then back to PT. (Pain Clinics) can really be just for maintenance ofttimes.

I've had RSD, and more since '83.

So, I ask that you look at ALL options!

Go to the rsdsa.org and you may be able to find a doctor there.

I've heard lots of good things about the Cleveland Clinic.

But, don't waste a day!

Prayers and wishes!


Pete

The childrens pain clinic made a spot for her for next Thursday. I also have an appt made with a child Rheumatologist, that my Ped recommended, though I am not sure if that is where I need to go. WAiting to get answers about that.

I think I am still in denial myself. I want to see my child walk, skate, and rock climb again. I keep reading that she may have this the rest of her life. This is so sad. I sometimes wonder if the diagnosis is wrong myself, since we dont have the sweating, burning sensations, etc that may go with this, or maybe we are early enough in the process.

Thanks for all the support.

Usually kids have better chances than adults, and esp. if they're diagnosed early on (within 3 months of onset). I read somewhere that it's because they still have growth hormone. But then yet again, one case of RSD in a child might not be another case, even here. She won't necessarily have this the rest of her life in a disabling way, so try and keep hope alive. It all depends on when it was diagnosed and on how well she responds to treatment (and there are so many forms of treatment).

It is important to know that the saying "no pain, no gain" doesn't apply here. She can use the foot and have PT but it needs to be within the pain limit and here's where all of that gets very difficult.

First and foremost she needs treatment and pain management because RSD hurts like hell. The pain of it is higher than cancer pain and higher than an untrained first delivery without anesthetics - and she's got this 24/7. Keep that in mind.

You are right in getting her care immediately. Try and read up as much as you can on RSD. Here's one resource I know of:

RSD Puzzles:
http://www.rsdrx.com/rsdpuz4.0/001.htm

Best of luck to you both!

I'm SO sorry to hear that your daughter suffers from RSD and really hope that you can find something to help her real soon! You are both in my thoughts!

I developed RSD when I was 12 years old after an ankle sprain (am now 14) and that was hard enough but I can't imagine having it at just 10 years old ... I really feel for your daughter! The RSD started in my left leg and has since spread to include both arms unfortunately after further injuries. I spent13 months in a wheelchair after a nerve block caused me to lose my coordination and had to undergo an Intense PT Program to learn how to walk again. I can walk short distances now, however I still have to use my wheelchair long distances.

Have you thought about trying to Intense PT Courses to see if they'd help your daughter? I've spoke to quite a few kids before who have said that they have really helped them. I've been on 2 before and they hurt a LOT but they did work, though I am a far way off being 'cured'!!

If you and your daughter have concerns that it isn't RSD, I'd go and get a second opinion and have further tests run. I had a second opinion but my RSD was confirmed by about 6 different doctors as I had all of the symptoms unfortunately.

As the others said, try and not lose hope. I know it's really hard but your daughter is fairly new into the diagnosis (RSD is best caught within 3 months) so there is a real chance of finding something to help her.

For me, no medications really helped. I have tried everything nearly. The only thing that helps is Ketamine however I only take that when I am in a really bad pain flare as my Dr was concerned it could cause more problems than enough. I am currently undergoing PT and considering seeking further options as a last resort to try and help with the Dystonia (movement disorder) I also have. I've tried mirror therapy to try and learn how to get my RSD limbs moving correctly but it didn't help me. Everyone with RSD is different unfortunately and that makes it hard to determine what will work and what wont.

If you or your daughter ever want to talk, please know that I am here for you as I know first hand what you are going through!!!

Take care and keep us posted,
Alison

I am confused about a rheumatologist versus a pediatric pain clinic Dr. do I see both?

Welcome to Neurotalk,
You come to a wonder place where you will find comfort and so many educated friends that will be 'here' for your daughter, yourself, and family.
I saw on the national news about a week ago the story about a young woman who got RSD and news showed her being able to run with no problems, but when she walked, she had dystonia,, an involuntary movement that is uncontrollable. That may explain why she could skate, but not walk. With some people that is a symptom of RSD. rsd.rx is a wonderful site to learn from. On the part puzzles list that you were referred to is a list of 146 questions from RSD patients and Dr. Hooshmand's answers. He is a retired rsd specialist in Florida that kept his website up for the benefit of patients and families of RSD. It is really informative.
I've heard so many good thoughts about the Cleveland Clinic-I believe they have a Childrens RSD part to their hospitall. Is that the one you have an appointment for next week?
I am a Mom with RSD. I'm 61 now and our daughter was 15 when I got RSD following breast surgery = benign tumors. I got frozen shoulder following the surgery (which was really rsd) but was sent to physical therapy right away. I decided to do massage therapy right before physical therapy to warm up my muscles and make the physical therapy, which was extremely painful, speed up the range of motion. I believe that also help desensitize my rsd shoulder. I went into remission for over a year. I took pain meds before the therapy. They told me it might go into the other shoulder and it did.
I didn't get a rsd diagnosis for 4 years. I had a second remission after the other shoulder therapy. The 2nd remission last over a year also-still undiagnosed. While water skiing, felt nerve pull in hand-original rsd arm. Was misdiagnosed by rheumatologist as rheumatoid arthritis, although the test was negative for RA. I knew he was wrong and flew across the country to a well known Orthopedic Hand Surgeon. He diagnosed me as rsd in 1 minute. Nuclear med test supported him. He had me in pt the next day and ordered a Tens Unit. I came back to Phoenix, AZ and found a good neurologist and a good Ortho Hand Dr. Both supported RSD diagnosis and got me into PT.
That's why you have been encouraged to get your daughter to good RSD DR. as soon as possible. Time is critical along with good rsd dr.
Research as much as you can-although it can be overwhelming. Like what was encouraged-keep hope alive. Children, & early diagnoses, really do have a better chance of remission.
I know you are very scared, but please know you both are in our thoughts and prayers. Ask anything you want-we are here for you both. Take care, loretta and soft hugs to your daughter.

My personal opinion is a Neurologist, that is informed about RSD, is the kind of Dr. to see. I see a Neurologist who also is a pharmacologist and a psychiatrist. I've been seeing him for at least 5 years. Once a month, as I have had RSD for 15 years.
RSD is a neurological disorder. It is a autonomic disorder, which means it effects the sympathetic nerve, parasympathetic nerve, involuntary organs which control body temperature, blood pressure, circulation, (that's why HBOT helps some people-it promotes circulation to extremities) Hyperbaric Oxygen Chambers help some people. My Dr. just built two clinics that both have HBOT in them, they also promote healing, burn victims, and other conditions. Insurance doesn't cover HBOT for RSD, so I'm working on getting into a financial position to go thru a series of treatment. It's expensive. There are a couple of people on this forum that have HBOT in their homes. I have personally talked to clinics in Florida and California. I'm about 10-15 minutes from both clinics, here in Scottsdale and Paradise Valley.
Hope this helps, loretta with soft hugs

If you know your daughter has rsd, you may want to call the rheumatologist, and ask if s/he treats it (rsd). If he doesn't, you may want to ask for a recommendation, of some doctor who does.

Are you near a good University Hospital? If so, you may want to call their neurology department ask for the chief of neurology, and ask if he treats rsd? (I completely agree with Loretta, a neurologist is the way to go, but be careful to find a knowledgeable one!)

Seriously, it's time for you to find / choose a doctor who will be the "lead" doctor for your daughter.

I was diagnosed by Dr Schwartzman in Philly, who is now doing the Ketamine Coma's in Germany. I now see his ex partner, for almost 20 years, and he takes care of directing everything for me. I of course would recommend either of them, but they can take quite a while to see. As for Dr Schwartzman, the ketamine coma is controversial, and expensive (not covered by insurance. There is probably more info on rsdsa.org )
(That's just FYI)

The reason I say what I do, is, your daughter may need some medication, while she gets to some good physical therapy.
This is a "Use it or Lose" type of disease, wether it's cured or not.

Of course, we're all pulling and praying for a cure!

pete

Hi,

First, I am sorry to hear that your daughter is going through this at such a young age.

I have a child with RSD as well, I took her to the Cleveland Clinic Pain Rehabilitation for Children. I highly recommend the three week program. She is young and in the first stage, she can go into remission and maybe never see this ugly disease again.

The program is two weeks in hospital and one week outpatient. It is all children they understand what each other is going through, I took my daughter twice. This is a great beginning.

Opiads are not good for pediatrics, they tend to make the pain worse. Look into a pain program, don't get caught up in going from doctor to doctor to doctor, PT/OT with therapists that do not know much about RSD, they can hurt her more. here is the contact information for the pain program, the contact name is Kristen Buchanan 216-448-6158. Call on Monday, this is the best chance for your daughter. It is not an easy program, but you should begin here. Trust me I know...

My prayers are with you.

Sandy